ANA Discussion Forum
AN Community => AN Community => Topic started by: Rich56 on March 16, 2009, 07:32:05 pm
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Hi Everyone,
I’m Scarlett’s (SML) other half, Rich.
I thought I’d take this update deal for a test spin, with a pre-op update, we know Nancy is waiting for it.
First, I must say this:
I have been doing a lot of reading on your forum. The information, and photos have been very helpful, but it is the way that you all support each other that floors me. You are all truly amazing people.
It tears me apart to see Scarlett going through this, but you should know that she has gained so……….. much strength from all of you, and so have I.
All I can say is thank you from the bottom of my heart!!!!!!!!!!!!
Okay, enough of that.
Pre-op 3/16/09 took almost 6 hours.
Left the house at 5:45 a.m.
7:00 a.m. Pre-Admission Testing, made it by 3 minutes: After a little paperwork, came an EKG, blood work, urinalysis, ect., then waited to see a Nurse that basically went over the paper work filled out upon arrival, then waited to see a Nurse Practitioner (some see an Anesthesiologist) who goes over the do’s and don’ts prior to surgery, such as don’t take aspirin 1 week prior to surgery, don’t take anti-inflammatories 3 days prior, ect. She also went over what to expect before, during, and after surgery. This all took 2 ¾ hours, which made us late for the hearing test.
9:30 a.m. Hearing Test: Late 15 minutes, but they were able to work her in just the same. They did a basic hearing test, and an Auditory Brain Stem Response, which tracks signals from your ears through your brain. They use this same procedure during surgery to monitor your hearing, and facial nerves. This visit took 2 hours.
Took a coffee, and muffin break.
12:15 p.m. Chest X-Ray: This took 30 minutes or so.
1:00 p.m. Signing Consent Form with Dr. Barker, he's a nice guy, and very confident. He said he would be there, with Scarlett, until she wakes up from the Anesthesia, very reassuring. This took about 30 minutes also.
Remember to add parking and walking time to your travel time, or you will be late for your first appointment, like we almost were.
Thank you all again,
Rich
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That will work, Rich. Thanks for "volunteering" to keep us updated. :D
Scarlett will do fine, though you won't believe it when you first see her after the surgery. Recovery mostly just takes some time and patience. Your job will be to attend to her every need and whim, and accept her grumpy ungrateful responses without complaint. Same as usual, in other words. ;)
Hopefully I am not in trouble for joking around too much. We are wishing her the best, and look forward to the post-op news.
Steve
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Thank you, Rich. That is very helpful. I guess it would be a little late to be telling Scarlett to stop aspirin a week before surgery when it's only two days away!
I was going to call Millie yesterday and get down on my knees to beg her please not to bump my surgery again. I'm so afraid she will do it without asking again. I think I'll beg today.
You have the scarf, I trust.
I'll be thinking of you and pacing the forum like an expectant mom tomorrow.
Luck o' the Irish to ye,
Nancy :-*
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Hi Rich,
Just a note to send my prayers along to you and Scarlett for the next few days. We will be thinking of you and praying for a great outcome and speedy recovery. Keep us posted!
Ernie
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Your job will be to attend to her every need and whim, and accept her grumpy ungrateful responses without complaint. Same as usual, in other words. ;)
Steve
;D ;D ;D ;D ;D ;D ;D ;D ;D ;D ;D ;D ;D ;D ;D ;D ;D ;D ;D ;D ;D ;D ;D ;D ;D ;D ;D ;D ;D ;D ;D ;D ;D ;D ;D ;D ;D ;D ;D
Scarlett
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Love it! Remember to say that to my Dave when my time comes, Steve.
Nancy
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Will keep you and Scarlett in prayer for a successful surgery.
others who may be reading this: how do you insert a portion of someone else's quote to comment?
I get the whole quote.......
Luck o'the irish to ye,
Maureen
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I get the feeling that Scarlett likes that idea... just a little... :D
Scarlett - good luck - you'll do great. Rich, good job on the test run...we'll expect you to keep us all posted!
Sending good vibes your way!
Lori
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others who may be reading this: how do you insert a portion of someone else's quote to comment?
You mean like that?
I hit the quote button, which shows the whole post being quoted. Then I delete out the parts I don't want. As long as you leave the [quot ....] part at the beginning intact, and also the [/quot..] at the end, you can put in or take out whatever you want in between.
Steve
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others who may be reading this: how do you insert a portion of someone else's quote to comment?
You mean like that?
I hit the quote button, which shows the whole post being quoted.
Steve
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You mean like that?
Oops, sorry about that. Just trying to figure this out. Thanks Steve~
Maureen
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Hopefully I am not in trouble for joking around too much. We are wishing her the best, and look forward to the post-op news.
Steve
Not at all Steve, Nancy be sure to start with a new pair of slippers as it will likely be very late Wed. by the time I'm back here to post.
I get the feeling that Scarlett likes that idea... just a little... :D
Sending good vibes your way!
Lori
Lori, I think your right!
Maureen, after you leave the beginning and ending quote markings as Steve said, below that you can add what ever you want.
Anyways, (in order of recieving) Steve, Nancy, Ernie, Maureen, Lori, and to all that follow this post, THANK YOU!
I'll keep you posted, pun intended ;D :-* ;D
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Nancy be sure to start with a new pair of slippers
;D :D ;)
Will do!
Nancy
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Scarlett, I'm new around here, just wanted to send my regards for and excellent surgery and recovery.
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Thanks everyone for your good wishes. See you all as a “postie�!!!
Scarlett
P.S. how do I add a photo to the post? I tried to copy/paste a jpeg…didn’t work. Also tried the “insert image� icon, didn’t work either.
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Hi, Scarlett.
Steve gave me the instructions below to follow. See if it works for you. It's nice to have a face to go with the name.
Also, I just called Millie for the third time today and finally got her after waiting for hours for her to call me. She said, "You're surgery's on the 8th." I said, "Yay!" She's faxing me the who, what, where, and when (not the why) for my pre-op on the 2nd, so here I go!
Think positive thoughts! When I was in third grade, I played Michael in Peter Pan (the smallest child - I was always the shortest in my class.), and he thought, "Candy, candy, candy" so he could fly. Maybe you have a word that will help you fly through your procedure and recovery and out the other side to NeverEverAgainLand!
Best of luck to you,
Nancy
If you mean what we call the profile picture, which shows up by your name in every post, these are instructions I posted for Cheza earlier this week: http://anausa.org/forum/index.php?topic=8687.msg94982#msg94982
You do need some sort of account at a publicly accessible web site that can store the picture; they are not stored on the ANA server. Using photobucket is very easy.
Go to http://photobucket.com/, and click the big green Join Now button. It really is free, just give them an email address. If they ask for anything else, decline.
Once you have an account there, you can upload pictures to photo bucket. If you want one to put by your name, make it a square to avoid distortion.
Then you need to get the link to the photo. If you go to your photo on photo bucket, there will be several versions of links below it. Click on the one that says Direct Link. You should see a little yellow rectangle pop up that says Copied.
Now go to your profile page, and click on the section titled Forum Profile Information. The first entry is "I have my own pic". If you right click in the box there, you can paste the link from photo bucket. Then just scroll to the bottom of the form and click the Save Changes button.
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Hi Nancy,
Glad to hear Millie confirmed everything, and is sending you the info. Hope there's no more BS for you!
We will try your idea for under the name on the left, thank you very much! However, what we were trying to do was insert a photo into the body, just as Ernie did.
Speaking of Ernie.
Ernie, YOU ARE... SUPERMAN, as others have stated! Scarlett received "The Magic Scarf and JOURNAL". Amazing, in just over 24 hours. Our post office has a seperate zip code from the center of town. I checked the mail at 10:00 a.m., no package. I asked the post master if there was any chance it could come in later in the day, he said that on Tuesdays he does stop by the main post office in town during his lunch break, and that if something did come in he'll bring it back. We went by later, and BINGO! You truely are "THE MAN", Thank you!
Rich
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We will be here waiting.... sending positive vibes. Care giving is a hard and exhausting job, rest and take care of yourself.
The greater universe is taking care of her. Before you know it you both will be able to put this behind you!
Thinking of you both.
Hugs Michelle ;D
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Good luck, Scarlett! You'll do great ;D I'm looking forward to seeing you as a fellow postie.
Thanks for being Scarlett's scribe, Rich. We tend to worry about our "family members" and will be anxiously awaiting your updates.
Scarlett will be in good hands, but make sure you don't neglect yourself during this whole "adventure". Make sure you take care of yourself, too.
Surgery can be tough on family members also.
Jan
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However, what we were trying to do was insert a photo into the body, just as Ernie did.
It's the same principle as far as putting the picture on photobucket or a similar public web site. Then instead of pasting into your profile, you can paste the link between the brackets after clicking the image button. Or just copy the "IMG Code" version of the link directly into your post.
When your are composing your post, it should look something like this (ignore the word Code:):
[img]http://i335.photobucket.com/albums/m447/sgerrard_01/me5.jpg[/img]
which will look like this in the actual post:
(http://i335.photobucket.com/albums/m447/sgerrard_01/me5.jpg)
Steve
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Hi Scarlett and Rich,
I don't think I've 'met you' yet. I had translab about 7 weeks ago. Time flies, and I'm doing much better now.
Rich, do take care of yourself tomorrow. I didn't realize this until he talked about it after the surgery, but waiting for 8 or so hours (while I was in surgery) really did take a stress toll on my husband. I think he was more upset about the surgery than I was!
Scarlett, I hope all goes well with you and that when you're recovering you'll rest a lot too and take it easy. It is difficult to deal sometimes with the fatigue. But it gets better.
Thanks for keeping us posted! Good luck on getting your photo on here - as you can see, I haven't quite dealt with that either.
See you on the postie side of life!
Keri
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Scarlett and Rich,
I am SO glad you received the scarf and journal in time! I know how much that lifted my spirits when Kim sent them to me!
Today is surgery day, and I want you to know that my prayers are with you today. I am sending positive thoughts in your direction for a speedy recovery. And Rich, I think you have the hard part today. Waiting for the word to come from the Doctor has got to be way harder than sleeping on the table :). Hey, I can say that. I was the one sleeping on the table 2 weeks ago! I really do mean it, waiting for news has got to be hard.
Looking forward to hearing from you BOTH soon,
Ernie
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Hi Scarlett,
I am new to the forum. I wanted to wish you well on your upcoming surgery and recovery.
Vivian
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Hi Everyone,
I just got home.
Scarlett is okay!
I know, like myself, some like a little more detail so here we go:
They took her in at 5:45 a.m.
The surgery itself began at 9:09 a.m. to 6:44 p.m. (about 9 ½ hours).
She was moved to the Neuroscience Intensive Care Unit at 8:10 p.m.
We were aloud in to see her at 9:00 p.m.
Dr. Barker was able to remove the entire tumor, which was benign (spelling?).
She currently shows no signs of facial paralysis at all.
Right ear audio nerve was cut because it was too involved with the tumor.
Balance nerve was supposed to be cut however in my meltdown I forgot to confirm that.
She was in good spirits, and looked great considering, “The Magic Scarf� did it’s thing, and she appeared very happy with the outcome.
A good friend, like family, who is a nurse at another Neuroscience Intensive Care Unit came by and joined us when we went up to see Scarlett. She did her own preliminary evaluation, as she would her own patients, and liked what she saw.
We only stayed about 20 minutes. I wanted her to rest. A little more kiss and cry, and off we went.
Left Boston at 9:45 p.m.
I got home at 11:35 p.m. after dropping off my sister-in-law.
Time to get something to eat.
Thank you all for your prayers, and good wishes!
Rich
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I'm so happy to hear that Scarlett is out of surgery and ok! I hope you both get a good nights rest now. Thanks for the update!
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Excellent news, thanks Rick. And thanks, Scarf. Rest well, postie Scarlett.
Steve
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Great news....get some sleep... :)
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Great news, Rich. Please give Scarlett out best. And if you get a chance, please take a scarf picture to share. It's sort of a tradition around here. (Note to self: start thread with scarf pictures).
David
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Congratulations! Excellent results. Tell Dr. B I'm ordering up another one just like Scarlett's in three week's time!
Nancy :D
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Hi Rich and Scarlett,
We seem to be having a good period of great outcomes! Prayer, family, friends and the scarf go a long way to lifting spirits and ensuring a positive outcome. I was so relieved to read your post this morning! And I agree, take pictures! :)
Ernie
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Rich, very happy to hear about Scarlett's successful surgery. I know that's a big relief.
Prayers are with you guys for a great recovery. Thanks for the update.
Patrick
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Hi Rich,
What a relief it is over. I am so glad things went so well!
Sending healing vibes her way!
Michelle ;D
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We can't thank you all enough for the prayer, wishes, and overall support. Your the best :-*
I hope this works ;D
Here's Scarlett with The Magic Scarf and her sister Nadege.
(http://inlinethumb49.webshots.com/42544/2892668330033870391S425x425Q85.jpg)
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Rich,
What great news! Another positive outcome :) Keep us posted. Prayers for a smooth and uneventful recovery go to you and Scarlett.
Maureen
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Rich,
Thanks for sharing the great news! What a relief for all of us to hear another good outcome!
Scarlett may not feel like smiling too much for the first few days, but I know that beautiful smile of hers will be itching to come out in no time!!
Lori
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Rich~
So glad to hear the good news of another successful surgery!! Remember, your job is to be PATIENT (no matter what comes your way!) - sometimes we have a tendancy to be a bit grouchy or "not ourselves" after brain surgery. Go figure!! Give Scarlette a hug for us!!
K
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You're right, Ernie, we're having many great outcomes! So glad to hear Scarlett is out and doing well...all things considered! Thanks so much for posting the Scarf photo, Rich - I just love to see it as it's travelling around doing its magic!
Give Scarlett our best - look forward to hearing from her once she's up to it,
Cindy
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Rich:
A slightly belated thanks for the update on Scarlett. Her excellent surgical outcome is absolutely thrilling! What a great run of successful AN surgeries we seem to be having. I love it! Must be the scarf. :)
Jim
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Rich and Scarlett,
Even more belated than Jim but no less sincere. So very happy for you that it is over and done with and that it went well. Take care of yourselves!!
Marci
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Rich -
thanks for the wonderful update on Scarlett - and the great picture too!
Please keep us updated on her progress.
Jan
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I’m back…… ;D
Scarlett said to say Thank You to all of you for your prayers and good wishes.
She is coming along, but I think she will be in the hospital for at least a few more days. Although she looks great, she is still very groggy, and sleeping most of the time. The nurses are do their thing, do you know where you are, say your last name, ect. ect. She also hasn’t eaten much at all because of the nausea, but the nurses are working that out with meds, one to ease the nausea so she can eat, so that the other one for the neck pain doesn’t make her sick. The deck-a-dron (spelling?) seemed to ease the headache.
When my Father-in-law and I were leaving Dr. Lee was just walking in. We got to thank him, and congratulate him. He said the tumor was very large, and stuck pretty good, to both the bone and the nerves. He had Scarlett do a few things that indicated to him that there was no paralysis. Dr. Lee did say that she could have a delayed weakness, but that should not be permanent. Scarlett and I had been confused as to who actually removed the tumor, Dr. Lee or Dr. Barker. Turns out they both removed the tumor from their particular areas, ear vs. brain respectively.
I guess the plan tomorrow is for them to be able to get her up and moving so that they can evaluate her.
Again, thank you all,
Rich
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I guess the plan tomorrow is for them to be able to get her up and moving so that they can evaluate her.
Oh I'm sure she will enjoy that. :D
It's only been a day or so, so I'm not surprised she is just sleeping. If she is sleeping while taking Decadron, she must be very sleepy! The temporary facial weakness is always possible, but it sounds like she is going to come through it in great shape. Take care,
Steve
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Rich & Scarlett,
So glad to hear all is well in postie-land! Congrats!
Now, time and patience will make things even better!
Continued thoughts, prayers and best wishes!
Thank you for the pic! AWESOME!
Sue
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Hi Rich and Scarlett,
I'm a bit late coming to this thread, but just wanted to wish Scarlett all the best with her recovery, the hospital food and trying to get sleep in between nurses taking obs! My AN was around the same size and cystic - I had my translab 9 days ago (I can hardly believe it was only 9 days ago!). I don't know if this will help, but after the second day after surgery I wasn't physically sick anymore, although I still felt a bit nauseated. I couldn't eat anything that the hospital dished up as it all smelt like cabbage to me and I had no appetite, but a friend bought in a bunch of really big juicy grapes and they were fantastic. I knew after 4 days of not eating anything that I needed to change things so every time I had some water I ate two grapes and I think it helped. They were just lovely and sweet and cold. Also a cold face washer on my face felt nice in hospital. I got my staples out today and I can tell you the time absolutely flew from operation day to now, so before you know it she'll be past the horrible bits!
cheers
JB
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Hi Rich and Scarlett,
I had nausea, but only immediately post-op in the recovery area before going to ICU. I was lucky in that the only place my tumor was "sticky" was where the tumor and hearing nerve were attached to the bony structure of some part of the inner ear. That's why they were unable to save my hearing.
I wasn't given the decadron in the hospital. I suppose that depends on the extent of swelling post op. I did have to start it a few days after being home, however.
For some reason, I was starving the morning after my surgery. It was Friday, so my religion forbids meat during lent, but they served me up a nice meatless breakfast which I made quick work of. I got up and walked that morning when they told me I could move to a regular room if I could walk. That afternoon, everything on the menu had meat, so I asked for a tuna sandwich. They brought me a 6" tuna sub from subway! Fried fish was one of the regular selections for dinner on Friday, but it was soggy sitting in the middle of a bunch of watery broccoli.
Honestly, it sounds like Scarlett is coming along very well! No facial weakness right out of surgery is a very positive sign! I had one night at home where I had a delayed, weak smile on my AN side. It scared me to death, but it was better the next day. Maybe because I was so tired.
The important thing to realize is that we are all different. It is NOT a race to see who gets home the fastest. I fully expected to be in the hospital for 3 to 5 days. Tampa General is a large crowded hospital, and there were no beds for me outside of ICU, so I HAD to escape. From reading other Posties posts, I think it safe to say that the norm is that the first 2 or 3 days are spent groggy and with a feeling of "wow, what hit me?". But that will soon pass and we will be congratulating you on your return to home in no time!
I will continue to pray for both of you (I know it wasn't easy on my wife with all the back and forth, plus the grumpy nerve they installed in place of my balance nerve :) ). Thanks so much for keeping us updated on Scarletts progress!
Ernie
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Sorry for the hijack.... K I LOVE your new picture!!!! Are you wearing one of Steve's hats? Hey Steve are they the official AN hats? You could start your own business... where do we order them?
Michelle ;D
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The meds she is taking might be part of the sleepiness. I know of one nausea med that really knocks you out. Sometimes pain meds do also. Some pain meds can cause nausea so gets to be a vicious circle. Decadron ususally does makes one not sleep real well but the other drugs can be over powering it. I hope she soon gets to be doing better so she can get moving easier. It is a weird feeling when you can't stay awake.
Cheryl R
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Sorry for the hijack.... K I LOVE your new picture!!!! Are you wearing one of Steve's hats? Hey Steve are they the official AN hats? You could start your own business... where do we order them?
Check Kay out in her recent post: http://anausa.org/forum/index.php?topic=9000.0
They are most definitely not official AN hats. Next thing you know, I would have to start filling out forms. :P
A hint for the hopeful: it helps if I have some idea of what color you like. Some of the color choices are on the little hat web site I put together; see link below.
Back on topic: Scarlett, what's your favorite color? :)
Steve
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The Magic Scarf :o, I would say so >:(.
(http://inlinethumb07.webshots.com/41734/2202501160033870391S425x425Q85.jpg)
Just kidding.
Okay, get your Kleenex ready!
The gentleman in the photo with Scarlett and The Magic Scarf is Ricky.
We were telling Scarlett’s nurse about the story behind The Magic Scarf, this ANA Forum, and all you wonderful (and I mean that!) people. The nurse said that her other patient mentioned that he got a lot of information from individuals on the ANA web site. We couldn’t believe it, and she asked if we would like her to see if he wanted to meet with Scarlett, of course she said yes. So, he came over to see Scarlett. Ricky’s surgery started just before Scarlett’s to remove a 2.0cm AN from his let side, he also has no paralysis, and is going home tomorrow. Did I mention Scarlett is coming home tomorrow. The nurse said they were only 1 decadron apart. We asked Ricky “you know The Magic Scarf right?� he so no, to our surprised, so we told him the story. Scarlett asked him if he would like to take a picture with the two of them and The Magic Scarf, he said he would be honored to. This was truly a beautiful moment, and I’m filling up again just typing it.
This ANA Forum does so much more than offer information, it offers HOPE! And that hope comes from all of you! I can hardly see to type. And of course The Magic Scarf.
Thank you all so very much, you should be proud of yourselves!
Okay, get it together Rich. Scarlett is coming home tomorrow, as I slipped in there earlier. What a difference from yesterday. They had her up, walking the hall, and up and down some stairs. She still can’t watch TV yet because it makes her dizzy. I expect the 1 ½ hour ride home will be challenging, but who knows what tomorrow will bring.
Rich
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Rich~
NO WAY!! That is awesome!! How great is it that you got to "share the power"?? Glad Scarlette is doing well & going home tomorrow!!
K ;D
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Both Ricky and Scarlett look great. A very nice moment, and a great entry for the Scarf Journal. Good recovery-at-home wishes to both. :)
Steve
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I have not been home early enough to reply properly, and I know you understand that. So, please bare with me as I say a collective thank you to:
Steve, Nancy, Ernie, Maureen, Lori, Jan, Keri, Anissa, Vivian, Stoneaxe, David, Patrick, Michelle, K, Cindy, Jim, Marci, Sue, JB, and Cheryl R. I hope I didn't miss anyone.
You know something, you should never tire of reading that!
Look at the support: Keri 7 weeks out of surgery, Ernie 2 weeks, JB 9 days. You have been in our thoughts also, and we wish you a speedy recovery.
And thank you for caring about me, it feels odd, I’m not the one that had surgery. I’ve been fine, really. It meant a lot to me to keep you updated, because I know you genuinely care.
I promise to tone down the praise, but it will be hard!
Later,
Rich
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Rich and Scarlett,
How awesome was that?!? Both Scarlett and Ricky look like they came through with flying colors!
Congratulations on coming home tomorrow! Now you can see why people say the first day or two don't count. Things move along very quickly in the beginning. You will both be so much more comfortable at home. I know I was.
Rich, you've been doing just fine with the updates! Keep in mind that I cheated. I had a netbook there with me since Tampa General has free internet access :).
Thanks again for sharing that wonderful uplifting story! It really brightened my day!
Ernie
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...a PINKone...
K ::)
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I guess the magic scarf is works as long as it's in the building!
I'd hardly guess either one of them just had brain surgery! They look a heck of a lot better than I did and I thought I did pretty well! :-\
If Scarlett is doing so well already, I think being home will only help things along. It just feels so much better to get home.
Have a safe and uneventful ride home!!
Lori
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Great to hear things are going so well.....and I did need a kleenex thank you very much... ;)
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Ohhh, that is so great! Thanks so much for posting that pic - I do hope it makes it into the journal. What a story to start my day off with - thanks!
Wishing Scarlett and Ricky continued fast/uneventful recoveries!
Cindy
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Rich that was a wonderful story about Scarlett and Ricky. May they both have a restful recovery.
Hugs to you, Scarlett and Ricky.
Michelle ;D
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That story is...awesome. Truly. Great news about Scarlett being released tomorrow. I hope the ride home goes smooth and her continued recovery even better. Take care!
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Hi Everyone,
Scarlett came home today and is doing great. ;D Her family came by and she had a nice visit. She is having trouble with the computer screen and hopes to post herself tomorrow.
Rich
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Welcome home! Feels good to sleep in your own bed, doesn't it?
Hope you have a nice restful day!!
Lori
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And thank you for caring about me, it feels odd, I’m not the one that had surgery. I’ve been fine, really.
Rich
Hi Rich and Scarlett!
Thank you for sharing the pic and wonderful story of Ricky and Scarlett - how cool is that?
I am so happy things are going well for both of them! ;D
Now i will look forward to seeing a pic with Rich, Scarlett and Ricky, maybe out on the town having a post-op party!
Rich - Caregiving is a special gift and you were fortunate to be able to help Scarlett thru this experience. [My family helped my sister thru not 1, not 2, but 3 hip replacement surgeries!] It takes such patience, persistence, and love to care for another - but it can drain you physically, mentally, and emotionally, too. Please don't feel 'odd.' The caregiver is indeed the 'tie that binds.'
And that is why we are all here, sharing and caring.
All my best to you!
Continued healing to Ricky and Scarlett!
Sincerely,
Sue
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Rich and Scarlett,
I've been away for four days, a little spring fling in NYC, to break up the cabin fever (turns out the weather was better up here than down there, but oh, well, got to spend a whole day in the Am Mus of Natl History, first time in almost 50 years). But I slipped into a book shop cafe at every chance to keep up on your reports. When I arrived at my college roommate's house, I was all doom and gloom about the various likely outcomes of AN surgery. But when I left, she looked very sad and expressed her concern for my future. I looked at her as if I didn't know what she was talking about and then said, "Oh, that, well . . ." It seems the reports of Joebloggs' and Ernie's and Scarlett's (and Ricky's) awesome outcomes have given me the sense that I, too, shall have the outcome of which dreams are made. I'm actually looking forward to getting it over and done with.
So, on the way home from NYC yesterday a lightbulb went off. Worcester, isn't that where Maxwell's is, and aren't we going to be there at about lunch time? We called Dave's daughter and had her google directions. A lovely bloke greeted and seated us for a delicious lunch in a creatively decorated space. There was a very large celebration of the life of Kenny happening on the main floor, but it was so cheery, we thought it was a wedding party! We asked if they had the apple fritter on offer, but as expected, only on Sundays. Four weeks from today. I'll be in and out and stuffing one of those babies down.
Now, Scarlett, what truly are your symptoms other than visual. Surely, some pain somewhere, balance, but what about the metallic taste? I was sort of counting on not feeling like eating since I've been indulging a bit and putting on the pounds like craaaaazzzzy! So, if that's not to be expected, I better stop the party now.
I am elated, even euphoric at all the surgical success stories. No fear whatsoever remains. Remarkable. Thanks for going first, all you guys.
Thank you for the detailed reports. Dave is feeling the pressure.
Positive vibes for a continued smooth recovery,
Nancy
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Scarlett,
Glad to have you in Postieland and I'll bet you are glad to be home! What a great story getting to meet Ricky and a great entry for the journal. Best of luck in your recovery and I hope you can take advantage of some pretty spring weather to get out and walk--it will really jump start your balance compensation if you can get out a couple times a day.
Be well,
Capt Deb
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Sounds like you're doing great! Hurrah!!!
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Hi Nancy,
Scarlett is still having trouble looking up and down trying to type without getting dizzy. But, she would like me to let you know the nausea only lasted the first two days counting ICU when they moved her around, and the neck pain was substantial during that time. On the third day post-op the neck pain was not too bad, just could't seem to find a comfortable head position. The Percoset, and the Valium seemed to work best for her. She was told by Dr. Barker that the headaches will be worse when she finishes the Decadron, which she just did, and that the Percoset, Tylonol, and caffine should help. The feeling on the side of her face is coming back, as well as taste.
The ICU nurses told her slow and easy wins the race, and that's what she plans to do.
Scarlett sends a thank you to everyone who sent their prayers and well wishes, she truly believes it helped with her positive outcome. :-*
Rich & Scarlett
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Capt.Deb,
Your not kidding I'm glad to be home. Still a little cold to be out for walks but soon, very soon.
JB,
I'm so glad your recovery seems to be on the right track as well.
Clear sailing & paddle boarding ahead,
Scarlett
P.S. Steve I'm checking out the colors ;)
P.S.S. typed by Rich
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Thank you, Rich. Every tidbit of information helps me prepare for my future. What is caregiving like? Do you feel you must be constantly vigilant, or do you have plenty of time to pursue your own work, interests, sleep, etc.?
Nancy
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Hi Nancy,
I do not think it is a good idea to be alone after this surgery.
I took time off from work to be with Scarlett, utilizing The Family Medical Leave Act, and planned on doing nothing but staying with her. She has only been home 2 days, and I let her do whatever she can, but am there to do whatever she can't, though she does not like to be babied. Right now she is not trying to do much, and that's fine. Her balance is too questionable. As she starts to do more we will see just how much help she needs and what my role will actually be. I'm glad she wants to go easy with this recovery. Currently not much has changed, so I'm not really caregiving.
I don't know if I answered your question. ???
Rich
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Nancy,
Here's something for Dave.
At MGH in the “Gray Family Surgical Waiting Area� there is a nurse that goes back and fourth to the operating room and gives you an update every 2 hours, plus and minus a half hour. There are also 2 volunteers that are there to answer questions, and they have computers that have general information regarding the surgery. After 3:00 p.m. there will only be the 2 volunteers, and all they will be able to tell you with regard to the surgery is when it is done. My sister-in-law was with me, and she taught me how to play cribbage. I figured there was a lot to that game, and the concentration would keep my mind occupied. I was right. By keeping yourself occupied, sitting where you can’t see the clock unless you want to (which is the big table on the left as you walk in to the ‘Gray Family Surgical Waiting Area� at MGH), taking a walk throughout the wait to get a coffee, a muffin, a soda, or just going to the bathroom will help the time go by. We were fortunate to have a nice guy and his stepdaughter at the table and we chatted and told stories. Anything you can do to keep your mind off the time, and the surgery will help. When the volunteers get the call that the operation is over, and the Dr. is on the phone, she will take you to a private waiting room where you can talk to the Dr. And when you get the call, don’t take off like a rocket by yourself like I did, bring the one’s that came with you. I just took off, not trying to be selfish, just not thinking. The absolute most important thing for you to do is not worry about how long the surgery takes. These people are the best, and masters at what they do. Taking longer doesn’t mean trouble, as I was feeling, I means their skills are being put to the test, and believe me they are up to it. All caregivers can do is be patient, and keep your mind busy. No one can guarantee a great out come. There is a higher power in charge of that.
Hope this helps,
Rich
P.S Let's not forget the power of The Magic Scarf
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Rich,
Dave is planning to load his work software (3D design) onto my laptop and work while I'm in surgery. Do they have wifi in there so he can update everyone?
When I get home from the hospital, he will have his desktop computer here at my house to work while he monitor's my progress toward independence. He won't go anywhere until I am able to function fully without him. My mother who is 90 will do the running of errands and delivery. She lives up the road.
Thank you for the information.
Does Scarlett sleep on an incline for her headache(s)? Did she have a physical therapist in the hospital who told her what to do at home (exercises, etc.)?
Wishing you continued progress without bumps in the road,
Nancy
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Hi Nancy,
I was told that I HAD to sleep at an incline, not for headaches, but to help keep the swelling down. The doctors wanted my head higher than my heart, and said 20 to 30 degrees would be the best incline. They also told me not to sleep in a recliner because they didn't want me straining to sit up. I was instructed to roll onto my side before getting up so there was no strain on the neck. I only had to do that for 2 weeks, but that was 2 weeks of not much sleep for me :)
Also, at least some of MGH is covered by wifi. Here's the excerpt from the MGH page:
Wireless Internet Access
Wireless Internet access is available for public use in the hospital’s waiting room and other public areas of the hospital. Stop by an information desk for details.
Rich and Scarlette,
Looking up and down is still an issue for me as well. I get immediately light-headed. I think I'm getting a little better at side to side. I've been practicing looking at an object and moving my head left to right and right to left. In my case, I can track better turning my head to the left than I can to the right. It gets better, slowly :)
Ernie
I imagine
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I imagine
;D ;D ;D ;D ;D ;D ;D
Thanks, Ernie, for doing that research for me. I did notice that I could pick up a signal on my ipod touch in Dr. Barker's office but not in Dr. McKenna's, so I was hopeful.
Nancy
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Heh. The "I imagine" was a leftover from a sentence that for some reason, was only partially deleted. It wasn't meant to mean anything :)
Ernie
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Hi everyone,
It’s me! I’m giving this typing thing a little test run to see how I do.
Nancy, The only restrictions I was given as far as sleeping positions go were during my stay in the ICU. I was propped to either my left or my right side with a little incline, but to tell you the truth, there was absolutely no comfortable way to be during that time. When they moved me to the regular room, the neck pain had subsided. I was able to position the bed to any angle I wanted. Nothing was said at all about being on an incline. I actually found it more comfortable to rest all the way on my left side (my good side) with one pillow under my head and the other pillow hugged in front of me. I also found that I could roll to my A side in a similar fashion (not for too long, just enough to give my good ear a break) and still be reasonably comfortable. Here at home I am doing the same and although I’m getting up to take my pain meds (I’m getting stabbing pains more so than just a constant headache) I am able to get back to sleep. I am done with the Decadron now so I am a little nervous as to how the headaches will be, Dr Barker said they may get worse after getting off the Decadron, but that Tylenol, Percoset, Caffine, and the Valium should take care of things. He said it’s not good to stay on Decadron for too long. By the way, Dr. Barker has a beautiful smile!!
I can’t tell you how relieved I am that this is over. Trust me, you are in excellent hands and Millie (although added more stress than needed) is just a fading memory. I can’t say enough about the staff. Oh, be ready to be stating your name, where you are, squeezing fingers and having flashlight shined in your eyes during your stay there, Normal precautions.
Rich here, I’m taking dictation. The dizziness has arrived.
No, I was not given any exercise instructions. The therapist said if she gave me something to do it might do more harm then good since she won’t be the one working with me on a stead basis to see what is working and what is not. Instead she gave me a small list of places that do physical therapy, some that she knew did Vestibular Physical Therapy, and a few that she thought might offer it. When ready we’ll start making a few phone calls and find out what it is all about.
Ernie, I haven’t tried to do any PT yet. I’ve been just relaxing on the couch with one of my cats. Make sure you get your rest in there too, and try not to over do it. I suppose that’s easier said than done. I expect I will start do things soon.
Talk to you soon,
Scarlett
P.S. Nancy I did see someone with a laptop, and it looked like a wireless router near the ceiling. Ernie, I agree with Scarlett, please take care of yourself. We hope you have continued success on your recovery.
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Scarlett,
I love beautiful smiles. I'll see him again on the 2nd for pre-op and will pay attention or even better try to make it happen. Being on the neuro-oncology floor was a bit unpleasant, and I imagine he must maintain a level of seriousness in the office when the cancer patients and family are present.
Thanks for the continued information flow. You must have an armload of bottles sent home with you or, heaven forbid, had to stop at the pharmacy on the way home from the hospital. Oh, they do have one right there, so perhaps before leaving?
Your recovery sounds divine! Did you read Joebloggs latest, just so you don't get frightened, and Ernie's comforting reply?
Good luck!
Nancy
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I know every physician and every center is different, but I was blown away by how organized Dr. Bartels office was in Tampa. Walgreens called our house to let us know that our prescriptions were ready to be picked up. This is about 3 or 4 days before my surgery date, so I assumed it was one of Isabels prescriptions. I called her at work and told her that her meds were ready. She was confused, since she didn't think she had any either.
Turns out that the meds were called in for me. Percocet, Decadron (I didn't get steroids in the hospital, mine were started at home), Something for my stomache, eye drops (prescribed, but really over the counter), and a thicker eye ointment. We filled all but the eye medicines, figuring we'd wait and see how I came through the surgery first. I asked about the meds at my post-op appointment, and they told me they do that so I'm good to go when I get home. I didn't need to take anything to the hospital with me.
Rich and Scarlett,
I think it's important that I reiterate that I am feeling great! I let you know about my brief bouts of head stuffiness so you will know to expect it, even after you start feeling better. I've been going to bed around 10:30 each night although I read for a bit before going to sleep. I get up around 8 AM and eat some breakfast before going for my morning walk. Rest isn't something that my body has been asking me for. I appreciate the thoughts and concerns, but it is time for the attention to turn toward the both of you, as well as those others who really need it.
I know I shouldn't, but I feel almost guilty about my recovery. It's so unfair that others struggle so much. Am I 100 percent? No. Even beyond the balance issues, I'm not 100 percent. Would I be happy living the way I am now even if nothing else got better? Yes! I am thankful and greatful for how I feel today, and would be 100 percent satisfied if this is the new me!
Sorry to ramble, but while I appreciate thoughts and prayers very much, they have already done their job!
Congratulations on your first partial post Scarlett! I remember my first post, moving the laptop back and forth trying to get the letters to focus :) .
Ernie
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Hi Scarlett (and Nancy and Ernie, and all!!),
Just saw Nancy's post - don't stress too much about my wee setback, that's all it is a tiny hurdle! From what I understand to get the old eye issues 12 days out of surgery is not that common, so you're probably going to rock it... besides it's totally temporary I'm sure of it and I'm setting my alarm every 6 hours for my steroids to make sure of that! Other than that I'm absolutely rocking things like you - a few days ago using the computer wasn't that fun but now I'm much like normal so you'll be fine too soon. I was on oxycodon (a morphine derivative, not sure what it's called in the US) for the first two days after surgery then I got changed to paracetamol (we call it panadol, I think you call it tylenol) and am now only taking it two pills in the morning and two at night (think will stop in the next few days as can't really be bothered and not in pain!). Other than that take a pill for balance which I've almost run out of so that'll be the end of that and my steroids (plus tummy pills because they're supposed to make you sick but so far so good!). In a week, touch wood I'll be drug free and rocking the rest of recovery. And all this without the bloody magic scarf which apparently needs to grow a twin so it can take a trip out to the colonies occaisionally! All is well Scarlett, and it will be well with you!
xxx
P.S. Re sleeping positions - you'll probably have a big turban on your head post surgery - or I did anyway, tres uncomfortable to sleep in but you find a way... I'm now sleeping predominantly on my non AN side but sometimes I wake up and I've turned to the AN side without any probs - haven't found any brains on the pillow yet anyway!
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Hey, JB! We were once a colony, too, ya know. Aimee can fill you in on that story, being a Brit, isn't she?
But back OT, what the heck is a med for balance? Can't imagine!
Thanks for all the encouraging words. Now if I were only 32 instead of 58, I'd be certain of this resiliency you claim for me. I'll do me best, darlin'!
Now, Ernie, I'm getting a little annoyed at your morning walks and your "too hot" outside, having to wait til evening for a walk. It's like 20 degrees outside here, and ice and snow everywhere except the driveway and road which are mud. I walked my dog the other day when we had a freak 50 degree hour, and I had to ban him from the house other than the MUD room for two days. Scarlett and I are pretty much housebound, and I should think a mall walk would be overstimulating should there be a mall within fifty miles of here, so . . .
My Dave's parents live near Tampa and can't imagine why anyone would live in NH, so I suppose it's our own fault. Sorry, just so sick of winter and sitting inside looking out.
My spa day is coming, facelift and lipo on the 8th.
Nancy
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Sorry Nancy! I'll be sure to report temperatures in Celcius from now on! Makes it seem colder! Ok, it's 9:30 AM and time for my morning walk. It's much cooler this morning, so I waited for it to warm up a bit. It's 16 degrees now, so off I go!
Scarlett and Nancy - The weather will be improving soon. March is on its way out, and Spring is just around the corner! I grew up in the Boston area and went to college at Lyndon State College in Vermont. My mothers parents lived in Burlington Vermont, my brother and a niece live in New Hampshire, and my parents still live in Massachusetts. I'm no stranger to New England weather :).
Keep warm!
Ernie
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Ah! Much better. A brisk walk in the crisp early spring air. Try not to work up a sweat. Got your snowshoes or Wellies on there, Ernie?
I'm going to try to get out with my new hiking poles (canes are so old school) today and slog around if it breaks 0 (Celsius, that is). Where in NH? And I hope they all come down for a visit every winter.
Nancy
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Hi all,
Just a word for all who are feeling good after surgery… Don’t forget to stay ahead of the pain. I went a little too long between pain meds yesterday and ended up with a monster headache last night. I finally have it under control again (I don’t like to take meds if I’m “feeling good�) and believe me I will not let that happen again! Since there are no refills written on the bottle, I mistakenly thought that I would have to make what was there last through recovery. Not so, if you need more, call the doctor.
Right now, I am enjoying just laying on the couch with one kitty cat curled on top keeping me warm. Looks like a beautiful day outside, but like Nancy .. I will wait for the warm spring temperature before venturing on walks outside, currently 4 degrees.
JB, I hope your set back is short lived. I didn’t have the full headdress, just a bandage in back which they decided to RIP off when they put me in my regular room. No brains on my pillows either, so I guess all is well! ;D
TTYL,
Scarlett
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Hi Scarlett,
Lots of pain meds require a re-write for more. In fact, they can't even be called in. You actually have to go pick up the script. Pain wise, I guess I was lucky. I still have most of my pain pills now rotting in a bottle, which is a good thing. Like you, I hate taking pills. I had to take a couple Tylenol before walking this morning, but that did the trick. I still get the stabbing pain somewhere in the surgical area, but it's short lived (seconds) and infrequent (once or twice a day). All part of the healing process, I'm betting.
I think congratulations are in order for you Scarlett. Isn't this the first update you did all on your own? :) I could be wrong, I didn't look back. Keep up with those meds and let the cat spoil you for a while. There'll be time enough for walking when the weather warms up.
Ernie
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Hi Scarlett,
Glad you're doing better all the time. I agree with staying ahead of the pain.. my husband kept telling me that when i felt like trying to tough it out. he said 'this is the only time you get to take percocet... go for it' (well ,within reason). now it's tylenol that does the trick.
and, regarding the 'feeling great after surgery.' i'm 8 weeks post now. i do feel better. but then i have a bad day and get so tired or headache-y. things are so much better than before, but it's still tough at times.
good to see the progress, though, in so many of you (ernie, scarlett, JB - i did it without the scarf too! i guess i didn't catch on to that until i was post op)!
keri
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Ernie, and Keri,
Scarlett typed up the post herself. I did the spell check. I told her to take her time, and when she’s done I'll clean it up a little. I think she did great! As we all know, the experience is different for everyone. She is still trying to find what works best for her, with regard to the pain meds. The prescription says 1-2 percoset every 4 hours, and she’s trying to only take 1 at a time. It seems that 2 most of the time, is what she’s going to have to do.
I’m so glad your both coming along,
Rich
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Take your medicine, Scarlett. :o
We had to bug my Dad to take pain medicine after his hip surgery; he would have preferred gritting his teeth and toughing it out. Managing pain helps you heal faster and better; your body has enough to deal with without having to brace against pain as well.
Laying on the couch in lazy repose with a purring cat in your lap sounds about right. :)
Steve
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Scarlett typed up the post herself. I did the spell check. I told her to take her time, and when she’s done I'll clean it up a little. I think she did great!
She did do great and that was close enough to her first post by herself! I don't know why I escaped the fatigue post surgery. That certainly doesn't seem to be the norm. Scarlett, you are doing great to be posting daily like this. Just remember what others have said, get your rest, and take your meds!
Oh, and don't forget to take more pictures too. Did you get a good picture of your scar? Also, did you have staples or stitches? I noticed there doesn't seem to be a standard as far as that goes.
Ernie
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Great to hear things are going well. I'm sure the cat is glad to have his/her staff available for petting... ;)
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Back on topic: Scarlett, what's your favorite color? :)
Steve
Well Steve, I’ve been giving this some very serious thought…
I have a feeling it will match my hair color beautifully ;D
Thanks, Scarlett
Style - Rolled Brim Hat
(http://inlinethumb27.webshots.com/5978/2739875450033870391S200x200Q85.jpg)
Swish Bulky Yarn - Squirrel Heather
(http://inlinethumb43.webshots.com/44330/2154259740033870391S425x425Q85.jpg)
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AAAAAH! I love the photos of yarn and wildlife! What a talent! Great color choice.
Hope you're feeling great today. The nice weather sure helps lift the spirits.
How about some more photos of you and perhaps your kitty cat?
Nancy
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Steve's hats rule and that is a beautiful color! I'm just afraid that because Steve knows I can knit I won't get one. ;)
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Oh, and don't forget to take more pictures too. Did you get a good picture of your scar? Also, did you have staples or stitches? I noticed there doesn't seem to be a standard as far as that goes.
Ernie
Ernie,
As you can see... Stitches for me! Color me weird, but I’m actually proud to show off my battle scar! I want to go in the grocery store and wear my hair up to gross people out!! Okay, I may be exaggerating a bit there, but you know what I mean.
(http://inlinethumb44.webshots.com/44843/2537449780033870391S425x425Q85.jpg)
Nancy,
Richie came home with a present for me today that I though was just the cat’s meow… ( I know what your all thinking…. Back away from the meds!!!) but really, he bought me a shower seat. It was great. I was able to just take my time and really enjoy my shower. We thought we had this situation covered, but as it happens the plastic stool I had was not very sturdy and the legs actually started to bend underneath me when the water warmed the plastic. Just something to keep in mind. Only $ 39.00 at Wal-Mart. Also, since I’m on a roll, a nice comfy neck pillow for the ride home from the hospital is a MUST!!
(http://inlinethumb06.webshots.com/34437/2604481120033870391S425x425Q85.jpg)
Okay, I’ll shut up for now…. But not for too long.
Love and Kisses
Scarlett
P.S. This post was all mine today. TA-DA
Steve, Thanks for the photo insert instructions, I bet you're sorry now!!! :-*
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As you can see... Stitches for me! Color me weird, but I’m actually proud to show off my battle scar! I want to go in the grocery store and wear my hair up to gross people out!! Okay, I may be exaggerating a bit there, but you know what I mean.
P.S. This post was all mine today. TA-DA
Now there you go! It's going to be fun coming up with stories about that scar. "I was visiting my friend in Florida, fishing down at the lake, when a 10 foot gator jumps up out of the water and grabs me by the neck!"
Now, for real, Grats on your very own, do-it-yourself postie post!
Ernie
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Get you and your amazing photos and everything posts! Scarlett is officially rocking her recovery!!!
P.S. I'm slightly jealous of your nice straight scar... mine is spectacularly C shaped.
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[Steve, Thanks for the photo insert instructions, I bet you're sorry now!!! :-*
Why, not at all, Scarlett! ;)
The Squirrel Heather is an excellent choice, I have had it mind for someone else as well. You'll see one of these days. I have a bit of a backlog right now, but I won't forget!
Steve
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Nice shower seat, Scarlett...pretty cool scar also!
Keep up the great recovery!
Cindy
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Continued wellness wishes, you Postie-Scarlett! You are truly amazing in your recovery efforts and thrilled things are going well! Onward and upward to continued wellness! :)
Phyl
(nice seat! :) )
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My goodness, Scarlett! I do believe you've had a personality change in that MGH place. Pre-op you were a little shy and nervous, but now . . . jeez! I can hardly wait for the new me! When do you get the stitches removed? I will get one of those seats on my way to my MRI on Monday. We got the porch swings out of the barn this morning and hung them up in preparation for my recovery lounging. I take my lounging very seriously.
Great photos, although I WAS eating my oatmeal when that incision wound popped up in front of my eyeballs. :o
How is your balance?
Nancy
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Great photos, although I WAS eating my oatmeal when that incision wound popped up in front of my eyeballs. :o
How is your balance?
Nancy
Pictures or not, eating is not a good idea while reading these boards :).
Ernie
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Sorry Nancy,
:-[
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Scarlett -
dare I say it? Your scar is cute. Very nice and close to your ear. Mine wasn't bad at all, but hands down yours is prettier than mine was.
Nancy -
I didn't use a shower bench, but lots of forumites say how great they are so you can't go wrong in getting one. Another suggestion, buy some baby shampoo. During my first shower I got some shampoo in my eyes and when I closed them my balance really suffered and I had to grab onto the shower wall. I'm lucky I didn't end up on my backside :P Maybe I should have purchased a bench afterall ;)
Jan
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Hi Scarlett,
It is so nice to hear how well you are so doing! I love the photo of your scar! Sharing the chair was a great idea, anything to help others is a great idea!
Relax, rest and heal.
Hugs Michelle ;D
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Scarlett,
How are you feeling these days? Haven't heard from you in a while. Every time I open this thread I get freaked by your scar photo. It's good for me though to get used to the idea.
Hope you're getting better every day.
Nancy
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How are you feeling these days? Haven't heard from you in a while.
Well, with the weekend here, Scarlett and Rich are probably out shopping at the malls, catching a movie, and maybe riding a roller coaster or two :).
Ok, probably not yet. ;D
Ernie
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you're funny, ernie!
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Good morning.
Nancy, You pretty much had my pre-op personality exactly right. Leave it to a little surgery to flip your world! ;) But, really, I’m attributing my giddiness to the relief I’m feeling that this part of my journey is over and that I was actually able to stay on the computer long enough to type my own posts.
I had no idea the scar picture was going to freak you out like it did. Last thing I want is to upset you. But just know that unless I’m holding my hair back like that, the rest of my hair covers it completely. It does not hurt at all ( it IS very tight) but that’s all. I’m usually one who doesn’t like looking at those kinds of things either, but by looking at others who have posted their pictures, helped me prepare and I even found myself saying, “wow, they did a great job�!
Before surgery, I was comparing myself to the cowardly lion from the wizard of OZ, The Scar picture felt like I had just been awarded my Badge of Courage. I was just having one (or should I say … another…weird moment).
These day’s I’m feeling good with the exceptions of the headaches at night. I’m begining to think that being on an incline while sleeping is actually reducing the severity of them.
Well, with the weekend here, Scarlett and Rich are probably out shopping at the malls, catching a movie, and maybe riding a roller coaster or two :).
Ok, probably not yet. ;D
Ernie
Ernie, Does doing laundry count? Hummmm… I thought not! Well. I will be having fun today!! It is a beautiful SUNNY DAY and the temperature right now 50 Degrees F!!! Richie and I are going for a walk outside!! YEAH!!! :D
Scarlett
P.S. Nancy, PM me your address, time for the scarf to continue its magic ride.
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It does not hurt at all ( it IS very tight) but that’s all.
Just wanted to chime in and say that in my experience, your scar will be tight for a while.
I'm almost two years post op and just recently the tightness around my scar finally disappeared.
Like you, it didn't give me any pain. I just found it somewhat annoying.
Jan
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Glad to hear you continue to recuperate well, Scarlett! Don't you just love showing off your incision to others? Kind of freaks them out.
After your incision heals completely, try the Vit E treatment. Cut open the capsule and rub the oil on the incision and around.
But not for a couple months, OK?
Maureen
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Sorry, been in Boston having fun today. This coming week I have to drive down for my MRI on Monday and for pre-op on Thursday. Lots of miles on the car.
Don't apologize about your scar photo. I've seen them before. They're just a little startling when I'm expecting to have to read small print and get a large image in my face. I'm the only one in my family who didn't go to medical school, including my mother, and that's why.
I'll PM my address. So excited to be the recipient of the Magic Scarf. Thanks!
Nancy
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Thanks Maureen,
I’m definitely going to try that vitamin E in a few months.
Scarlett
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Scarlett,
You are doing great! Laundry? You couldn't get Rich to do that? ;) Remember, you shouldn't be lifting more than about 5 pounds right now. My doctor still has me at 10 pounds, but I do break that sometimes (shhhh). How'd that walk go today? I bet it felt good to be out!
Nancy, congratulations on being the next recipient of the Magic Scarf! Those who don't get the AN scarf do get a "virtual" AN scarf, so they aren't left out :).
I made copies of all the pages in the journal up to it's journey to me. If anyone is interested, I can scan them and post the pictures in a separate thread.
Ernie
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Scarlett, your last post made me smile so big! Ten days after surgery and you sound so bright and cheery, I love it. I hope you had a nice walk!
Anissa
P.S. I was kind of bummed to get skipped by the scarf but I borrowed my son's and I know it'll work wonders. I am curious about the journal and would love to see the pictures, Ernie. :)
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Scarlett,
I've been kind of proud of my scar too! I never had stitches or got in a fight or broke a leg so I coudl get people to sign my cast... no, nothing like that. Although I gave the person who shaved my hair a hard time because so much was coming off, my hair covers all the shaved areas, it just looks a little uneven. If I put my hair in a pony tail, you can see remnants of my cool scar. Now my hair has grown about an 1/8" over it. It's still kind of tight, and actually hurts a bit some, but not badly. I'm 8 weeks post, don't know how long that lasts, but I can live with that a lot easier than the headaches (used to be bad, those have gotten better as well).
Glad you're improviing and that you and Rich have gotten to know so many!
Keri
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Scarlett,
You are doing great! Laundry? You couldn't get Rich to do that? ;)
Ernie
Wait a minute, wait a minute, you got it all wrong :D :D :D I loaded the machine, she decided how much soap she wanted since it was her mother's machine and I wasn't sure what she would want, then I continued to do the rest. Ffffuuuu that was a close one ;D :o ;D :o ;D
We certainly have met alot of wonderful people. I know we could never give back all that we have received, but we will most certainly give it our best shot! :) a big hug to all of you,
Rich
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Scarlett,
You are doing great! Laundry? You couldn't get Rich to do that? ;)
Ernie
Ffffuuuu that was a close one ;D :o ;D :o ;D
Rich
I mean Pheeewww :D :D :D boy that was another close one. I was signed off and almost in bed when I realized, ---- I just stepped in another one :D :D :D
Good night everyone, and you too John boy,
Rich
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Scarlett,
Your scar looks great! I was pretty proud of mine too, sort of like a badge of honor. Now I'm (almost) sorry it's not visible. Continued well wishes.
Marci
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Having the scar for show and tell is important! Let's say you do or say something really off the wall. Everyone turns to you with a real strange look on their face. You apologize, saying it was the brain surgery you had that caused you to do/say what you did. You turn your head, move your hair, and they all go wide-eyed and understand! Without the scar, they would never believe you ;D ;D ;D
Ernie
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These day’s I’m feeling good with the exceptions of the headaches at night. I’m begining to think that being on an incline while sleeping is actually reducing the severity of them.
Scarlett,
How are you establishing the incline? I am considering shopping for a foam wedge or whatever at Bed, Bath, . . . for that purpose. I'll get the shower bench.
You and Rich have been especially helpful since you are so fresh and having been in the same spaces with some of the same hands providing your care.
My big worry now is that my tumor has ballooned in the last five and a half months since my last MRI. Tomorrow will tell.
Inching my way toward the day,
Nancy
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P.S. I was kind of bummed to get skipped by the scarf but I borrowed my son's and I know it'll work wonders. I am curious about the journal and would love to see the pictures, Ernie. :)
Hi Anissa,
I don’t think I could say it any better than Ernie did:
Those who don't get the AN scarf do get a "virtual" AN scarf, so they aren't left out :).
Ernie
I believe your son’s scarf is going to bring you magic and joy beyond belief. To symbolically have your child to hold near to your heart, will surely bring you comfort.
Magic scarf or no, I personally will be thinking of you (as well as those still recuperating and waiting their turn) and will be sending you positive thoughts and prayers for all good things to come your way.
I like Ernie’s idea regarding the journal, I think that would be nice.
Keri,
Jan said the tightness from the scar area finally disappeared after about two years. I get my stitches out this coming Tuesday. Beside the tightness, I really haven’t experienced much pain at all. Hope it stays that way!
I had a beautiful walk out doors yesterday. I don’t know exactly how it happened, but some how it led me straight to a chocolate shop!! I fought it and fought it, but to no avail! ;D
No really I went to go buy chocolates for my wonderful Dr. Barker and Dr. Lee as well as my angel nurses in Neuroscience ICU and Ellis 12.
Nancy,
One pillow at a time. Seems I have no shortage of pillows at my house! I didn’t bother with a wedge. Like I said, no pillow shortage here.
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I made copies of all the pages in the journal up to it's journey to me. If anyone is interested, I can scan them and post the pictures in a separate thread.
I'd like to see the journal pages too. If it is too big to post as pictures, maybe it can be send around as an email attachment or something.
Steve
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I made copies of all the pages in the journal up to it's journey to me. If anyone is interested, I can scan them and post the pictures in a separate thread.
I'd like to see the journal pages too. If it is too big to post as pictures, maybe it can be send around as an email attachment or something.
Steve
Ok, Just scanned them in and will post a new thread. We'll see how they look from photobucket, but PM me if you want them as email attachments instead.
Ernie
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headed into da tube o' gloom in 30
called mili to ask why I don't have a hearing test on thurs
first she said I was having 8th nerve not 7th but then she said i am having different kind of surgery
I asked if it was retrosigmoid vs translab. She said yes. And I thought that was the case. She makes me nervous!
ok better go in there
sorry . . . From iPod
nancy
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Nancy,
Hope you had some good tunes going during your MRI. I listened to Tom Petty, but only because they didn't have Dan Fogelberg to pick from.
Millie will never change, but trust me, I would never trade Dr. Barker for the world. Millie is just part of the package and binds us together in yet another way... giving us a few extra grey hairs. From my experience, since my surgery, she has all but faded from my memory. :)
Scarlett
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Nancy,
Hope you had some good tunes going during your MRI. I listened to Tom Petty, but only because they didn't have Dan Fogelberg to pick from.
Millie will never change, but trust me, I would never trade Dr. Barker for the world. Millie is just part of the package and binds us together in yet another way... giving us a few extra grey hairs. From my experience, since my surgery, she has all but faded from my memory. :)
Scarlett
Tom Petty is one of my all time favorites! :). FWIW, I was never given a choice of music. They rolled me in and fired up some Mariah Carey (sp?). I HATE THAT LOUD SCREAMY MUSIC! It was SUCH a relief when the MRI machine would kick into overdrive and at least provide me some relief from the music!
Ernie
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Nancy,
Hope you had some good tunes going during your MRI. I listened to Tom Petty, but only because they didn't have Dan Fogelberg to pick from.
Millie will never change, but trust me, I would never trade Dr. Barker for the world. Millie is just part of the package and binds us together in yet another way... giving us a few extra grey hairs. From my experience, since my surgery, she has all but faded from my memory. :)
Scarlett
I put music on my phone yesterday and put Dan Fogelberg's Greatest Hits on there!! :) Also, some Jimmy Buffet (Songs you Know and Love), James Taylor, Amy Grant, Trisha Yearwood, Joshua Kadison... I like Tom Petty too.
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music? i just had that banging sound. plus whatever that other noise is that's echo-y and sounds like a heartbeat. my first MRI, i thought it WAS my heartbeat amplified.
next time i'm asking for some music. except then i'd probably wiggle my feet and they'd have to tell me to be still.
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Well, first of all, it was no longer the Tube O' Gloom. They have a new Phillips machine and it was the Bun O' Fun. They no longer offer music.
I was bumped again (Is this the new story of my life? Get in line, Lady.) by two elderly ladies who required emergency MRIs, but it was only an hourlong wait. Then the IV process failed as apparently I have developed a new syndrome known as "rolly" or "rolling" veins. I hope her multiple attempts don't ruin it for next week's nurses. I'll call for faxed results tomorrow afternoon so I can scoop Dr. Barker. Hope that thing hasn't blossomed over the winter, attaining huge status.
I feel as though I've hijacked Scarlett's thread, but this isn't really worthy of it's own. Maybe I should begin a countdown after pre-op day on Thursday.
Scarlett - Have fun playing Easter Bunny today, and especially getting your stitches removed. Does that mean you can wash your beautiful hair?
How are your headaches?
Nancy
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Hey, Scarlett. Mili actually called ME today. I forgot to ask if she'd seen you there. She was confirming Thursday's appointment, so I guess she does eventually get around to doing her job.
Another question . . . I learned on the MGH website that it is possible to order meals for Dave. Did you try that? If so, was the food horrible?
Thank you.
Nancy
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Hello everyone,
I’ve been trying to get thank you cards mailed off to family and friends so I haven’t been on the computer too long. Richie has been conveying my prayers and good wishes to Liz, Tara and Anissa. The looking up and down while typing is still somewhat bothersome.
I did get my stitches out yesterday, but they made me wait an extra day before washing my hair!!! OH BOY… I couldn’t wait. That is the best feeling ever! I had to keep reminding myself to go easy and I did use the baby shampoo as Jan suggested.
I did so enjoy the walk in Boston and getting to play the Easter Bunny. I didn’t actually get to see anyone (Nurses I knew or the doctors) but I had my cards attached. I found myself getting teary eyed at the ICU and Nurses station. They are all such beautiful people!
We didn’t order food for Richie at the hospital, actually we didn’t know we could. I didn’t eat too much of what I got, but not because it was bad, I just wasn’t very hungry. On about the third day is when I found myself eating a little more. They kept shoving these cards in front of me, and telling me to fill them out for my next meals. I had all I could do to focus on the card so when I saw something that looked like Turkey I circled it ( I had Turkey a lot!) I wasn’t bad though. Toward the end of my stay is when I found the chocolate cake, ice cream, yogurt, fruit … you know all the good stuff! I had prepared meals for Richie and froze them so he could have quick meals here. We have cats, so he wanted to make the drive everyday. I got my report on how my “babies� were every day as well as my fellow forumites.
Keri, with my very first MRI I was told I could not listen to music. When I went to MEEI for my second one, they had a two-page list of music to pick from. I wonder what happened that they don’t offer that anymore. It was only in January that I went. Hummm??? Unless it’s a full body tube, you’ll probably be able to get away with wiggling your toes!
Nancy, let us know when you get the package, I’ll post my journal entry after you get to read it.
Scarlett
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Hi Scarlett,
I understand about having a hard time getting on the forum and posting when you're a new postie! It's hard!
Y'all are in Boston? I'm thinking about coming to Boston because my husband is running the marathon on the 20th! there's another AN member, Laura, that's running as well (she's having surgery 4/28).
There's also an AN brunch is Worcester (I'm sure I didn't spell that right) on 4/19. I just found it... i thought about going to that if i end up coming up for the marathon. Did you and Rich know about it and/or you going?
A lot of things (esp childcare) have to come together quickly for this to work out.
Would be great to have an AN mini reunion!
Glad your recovery is going well, although you're probably still having some challenging days, or at least tired days. It's encouraging to everyone here to have your's and Rich's support!
Keri
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Hi Keri,
Scarlett just went to bed, and I thought I'd check for more news on Anissa. It's sounds like her surgery went well and Chris is probably with her right now.
So, I called into Scarlett (she's not a sleep yet) and read your post to her. She wants me to tell you that "yes we will be there, that it would be wonderful to meet you, and hopes that the childcare issue can be worked out". I second that emotion. I think there is around twenty going.
Scarlett is recovering very well. Yesterday, after going into Boston, we went to Worcester to visit a friend in rehab at UMass. Scarlett drove home from Worcester. I watched how she drove and asked how it was, she said it was basically the same as before the surgery. When she looks quickly to the side, she has to give her vision a second to catch up with her eyes. But other wise it's pretty normal.
As for our support. If we can make someone smile or at least feel a little better, than that's a win. Like you just did for us, thank you :) You are an inspiration!!
Hope your recovery continues to improve (maybe you'll run with your husband next year) and that you are able to make it to the brunch,
Rich
P.S. Today (4/1/78) made 31 years that Scarlett and I have been together (married for 26) and it's been great ;D I love you dear :-*
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Hi Scarlett,
It sounds like you are doing well. I can't believe it has been two weeks already!
Good for you for making the brunch, I would love to go to that one, it is three time zones away, though. I hope Keri can make it too.
Rich, you are setting the bar high as an example of how to be the supporting half. Thanks for joining in. :)
Steve
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Hi Steve,
Scarlett is doing great, thanks.
We will meet one day, and it will be a pleasure.
I was looking back through the posts and saw that you had very good news a few weeks back, an unremarkable MRI, congratulations.
Thank you for allowing me to participate ;D
You have a good night,
Rich
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Just a quickie, on my way out the door for pre-op day plus four+ hours of driving.
Scarlett et al,
I did not have my MRI at MEEI or MGH because they allowed me to use the open machine in Woburn.
I called the post office yesterday and told them that I have a very important package arriving today and not to leave it hanging on the mailbox in the chance of rain. So, it should be here when I return tonight. Thank you!
I can't believe you drove and in Worcester, too! You're amazing.
Rich and Scarlett,
That is some fabulous togetherness. Congratulations!
Keri,
You spelled it right!
Later,
Nancy
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WOW way to go Scarlett! Driving!
And congrats on all those years of "wedded bliss". :-*
You two sound so great.
Maureen
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Nancy, Scarlett (who is taking a nap) didn't drive in Worcester. I pulled over on the side of the highway, and she drove home from Worcester.
To answer a question you asked on Anissa's thread. I think Scarlett is okay to leave alone now, she just has to be careful (I'm a worry wort), did I tell you we picked up a cane? It's titanium in color, and just something for her to stablize herself should she get wonky headed, not to use continously. I go back to work next week.
Thanks for the kind words :)
You will do fine next week, you've got the best, and of course the Magic ;D
Nancy, and Maureen, It's been a great 26 years of marriage (31 together). Thanks ;D
Rich
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Hi,
I don't know how to make quotes in those little gray boxes, but I think the quote of the day would be Rich's when he said something along the lines of, "Maybe you can come up and run the Boston Marathon next year with your husband!" Very nice thought, Rich! However, I've run one marathon and it took me 5:20. I once checked what my qualifying time would need to be (for Boston) if I was 80 years old and it was like 4:30! I'm 48, so i have a ways to go before 80, but I don't think I'll ever have a qualifying time! That's ok; I just wanted to make it through a marathon standing and I did.
But that's one of the reasons I want to come up to see my hubby run - it took him 2 yrs to finally qualify for Boston (and 6 or so marathons - he always missed by a few minutes).
Then i want to go to the luncheon in Worcester; want to meet you all and meet Laura who is also running Boston.
I'm trying to work the details out here (I'm in the DC area). I think I have childcare arranged for my autistic daughter. I don't have to play piano in church sunday the 19th. If I could just drive from here to MA things would be easier, but there's no way - I'd be too tired.
So for all you Boston-ites (Jim, Nancy, Rich and Scarlett and anyone else) - I"m looking at flying into Providence (good southwest fare) so I can drive to Worcester. Spending night with a friend Sunday I think in Whitensville? (may come up Sat and stay in Worcester?); after marathon maybe drive to Logan and fly out of there back home. Now, I'm just a little concerned about the line 'You mean Scarlett drove in Worcester??" I don't love driving, esp post surgery. Will I go nuts driving up in your neck of the woods? DC is no piece of cake so I'm used to traffic and all that.
Sorry to hijack the Scarlett thread! I'd love to meet you all and hope this works out. I'm used to doing crazy things I just don't know if post surgery I SHOULD be doing crazy things. I think I'll be ok though. I will make a decision by tomorrow (friday).
Thank you,
Keri
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Hi Keri,
The fact that you ran the half marathon makes you a winner in our eyes :) :) And that you did it being just under 2 months post-op is simply amazing.
We're sure your husband would love for you too watch him run the marathon, and it would be nice to meet you, but if your body is telling you this is too crazy, too soon, than so be it. We would hate for something to happen to you because you pushed yourself too far.
Rich & Scarlett
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Keri,
Driving in Worcester is not bad. I just can't imagine doing highways two weeks post-op. I'll be sticking to the country roads of NH for as long as possible.
I hope you can make it. Flying out of Logan on Marathon Monday, now that's a challenge, brain surgery or not!
Nancy
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Thank you, Rich, Scarlett and Nancy,
I'm still looking into the 'how i'd do it details' of planning this trip. Seems to be about as time consuming as researching an AN. I can't stay with my husband because he's staying with running buddies in Boston at a hotel near the finish (these are booked way in advance, as you might imagine). I don't know whether to stay out of town and go to one of those 'little towns' to watch the runners go by. When I get the final answer about my daughter's care (she's 19, but is autistic) I'll know more definitively if I can go. I'm learning that saying "Gee, I'll think I'll go watch the Boston Marathon" is about the equivalent of saying "It's New Year's eve; I think I'll head to Time Square!"
I do want to meet you all and having the luncheon one day and the marathon the next is just too coincidental to pass up!
Keri
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Hi,
I get to meet you all at the luncheon! I got childcare, flying into Manchester, staying in Concord. Glad I own a GPS thing for my car. Going to try to park myself somewhere in Boston on Monday and cheer for my husband and Laura (allegro). I fly out 9:00pmish Monday night. Arrive home at midnight. After getting the kids off to school Tuesday I hope to SLEEEEP.
Keri
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Hi Keri,
That's great news :)
Are you coming by yourself, and going to driving by yourself?
Rich & Scarlett
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Yeah, so we should like park really far from the entrance if we don't want our cars to be all dented up when we come out of Maxwell's? ;D
Now, Scarlett, I need an update. I would just like to know, since you sound all perfect, what is different about your life now as compared to before surgery.
That goes for anyone who is recently post-op and seems to be doing just fine from the posts. Be honest. I want to know exactly what to expect. My yard is emerging from the snow cover, and I will need to get out there and work on it in a matter of weeks, not months. So, is there even the slightest possibility I will be back in business by the end of the month like the young man who skied three weeks post-op? How long before one can bend over? How long before one can pick up heavy loads? How long before I can walk without my poles? This is just the optimistic time frame, not if there are any major roadblocks.
Thanks. Hope you're doing well.
Nancy
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I'm not sure if this is a hijack or not, but I'll answer from my perspective.
By 2 weeks, I could do simple gardening things. My orders were: No lifting, bending, stooping, pushing, pulling for 2 weeks. After 2 weeks, ok to lift up to 10 pounds. After 6 weeks and up to 12 weeks, no lifting over 30 pounds. Assuming everything goes well, I think you can get into the yard in weeks as opposed to months. You may need extra breaks, and will certainly want to protect the surgical area from dirt/dust.
This goes for you too Scarlett! :) Actually, I'm ready for another update from you too, Scarlett :). How are you feeling? Are you still taking any prescription meds for anything?
Ernie
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Thanks, Ernie.
That goes for anyone who is recently post-op
You meet the guidelines. ;D
That sounds great! I can hardly wait!
Scarlett must be having too much fun to post!
Nancy
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Hi Nancy and Ernie,
Been out on the town all night … just got in! ;D
No really, I have to say my post op symptoms have been pretty minimal:
I had the “wonky head� syndrome before I even went into surgery, so that feeling I would say is somewhat worse than I had going in. I have experienced what Ernie had said about people moving towards you making you feel more off balance. In these situations I found having my handy dandy cane comes in very handy.
I have had pretty severe headaches (mostly during the night) where there is no comfortable position to place my head. Usually within an hour after getting up and taking some meds, It’s much better. The last two nights in a row, have actually been headache free-ish (only tiny ones).
I am taking Tylenol every 4 to 6 hours for the pain in the daytime and have cut the Percocet to ½ pill for during the night as needed. I am still taking Valium before going to bed. It helps relax my neck.
I have had a shooting pain in my AN ear from time to time (Dr. Barker didn’t seem to think it was anything to worry about ) I got to ask him that before I left the hospital.
Restrictions given before leaving the hospital… Well let’s just say they were pretty vague.
(Exactly as it is written)
· Do not operate any motorized vehicle for two weeks.
· No heavy lifting or bending for one month.
· Slowly increase your activity at your own pace.
· Do not operate any motorized vehicle nor drink alcohol while on pain medications.
As you can see, no weight limitations were given.
I am just using common sense for everything else. If it doesn’t feel good, I don’t do it! ;)
Scarlett
P.S. Ernie, hijacking, not to worry. Everyones input is always welcome.
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Scarlett,
Valium for neck, percocet and tylenol for surgery site pain, and what for headache?
Sorry, just curious. I imagine I will have at least the same symptoms as yours if not additional. I don't have wonky head at present, only SSD, tinnitus, and balance if I close my eyes or fumble in the darkness.
I can't believe it's only four days away.
Nancy
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That goes for anyone who is recently post-op and seems to be doing just fine from the posts. Be honest. I want to know exactly what to expect. My yard is emerging from the snow cover, and I will need to get out there and work on it in a matter of weeks, not months. So, is there even the slightest possibility I will be back in business by the end of the month like the young man who skied three weeks post-op? How long before one can bend over? How long before one can pick up heavy loads? How long before I can walk without my poles? This is just the optimistic time frame, not if there are any major roadblocks. Thanks.
Nancy ~
I'm almost 3 years post-op and don't fit the parameter you set with your question which is focused on the short-term but I thought it might be helpful to mention that I was given permission to drive (by my neurosurgeon) 2 weeks after my surgery. I immediately drove on the interstate and never looked back (except when changing lanes, of course). :) I was playing miniature golf about 3 weeks after my surgery, with little problem, although my balance was not 100%. Actually, it still isn't, but 90% is acceptable. Bending over wasn't much of a challenge but I refrained from lifting anything heavy for quite some time, especially if my wife was watching. ;) I was walking about 2 miles daily (in a nearby park) just a week or so after my hospital discharge because the PT (who signed off on me after 3 visits) recommended walking as much as possible. I don't ski or do anything really strenuous or athletic and my condo association pays a professional service to keep up our lawns and such, so I can't offer any comments on that aspect but for what it's worth as a long-term view following a successful surgery, last year (2 years post-op) we visited Disneyworld® and I easily navigated the Space Mountain roller coaster ride as well as other fast rides ('Test Track' was fun) and probably walked about 5 miles or more per day, for 5 full days. I was tired - but not exhausted - and had a great time.
Forgive me for stating the obvious, but you know that every AN patient is unique and while I fully sympathize with your desire to know what to expect, post-op, just as I did, there will always be an unknown factor in this kind of surgery when it comes to post-op recovery. I had a tripod cane ready for my use when I was discharged - but never needed it. By the time I began my FSR treatments 3 months after my surgery, I was driving myself (accompanied by my wife) to and from the hospital, a 64-mile round-trip, five days per week for 5 weeks. No problem. My observation, based on my own immediate post-op experience, is that it takes a few weeks to get up to speed and you'll definitely notice a few deficits but if one is motivated and doesn't give in to minor set-backs, I believe AN surgery recovery (assuming no real complications, of course) can be relatively quick, although it probably takes a a full year to completely recover. Your mileage may vary but I'm guessing that you'll be doing some of that yard work by the end of the month. Perhaps not as much or for as long as you might wish - but you'll be out there. The drive to regain normalcy is a powerful motivator. It was for me - and I suspect it will be for you.
Jim
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Hi Scarlett - I just thought I'd chime in to say I got the shooting pains in my ear too - but they've stopped now just over three weeks post op. The docs didn't seem to think it was a big deal either, just everything settling around the nerves in I think. Also I get the weird feeling when people walk towards me too... I thought maybe I was going crazy! When I'm in the supermarket and someone is walking towards me with a trolley I hold onto the shelf so I don't get too wobbly! People must think I'm some kind of weirdo! Hope all going well there!
JB
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Nancy,
The incision site doesn’t cause a lot of pain for me. It’s uncomfortable sometimes to lay too long on that side, but even that is not that bad. It actually hurts worse above the incision. Dr. Barker told me eventually that area would get just a “numbness� about it. I’m sure you’ll be poking around the yard in no time. You can always hire a gardener to do the heavy stuff. ;)
Hi Jim,
It’s good to hear from you. From all I have read on this web site, I agree with you that all AN Patients have unique symptoms and all kinds of different outcomes from their surgeries. I feel blessed that mine have to this point been minimal. That is why I try not to say too much about the little aches and pains that I may be having.
Hey JB,
You know, I hadn’t really noticed the people coming toward me thing till I went back into MGH to have my stitches out. There were just so many people coming from every which way it was unreal! I will be one happy camper if that clears up one of these days. At one point I had to just stop and stand still till most of them went by me. I live in a relatively small town and supermarkets aren’t usually too busy at the times I go there, so it hadn’t been too bad till Boston.
I’m sorry you’re feeling that way too, but glad to have company! We can be weirdoes together. ;D
Scarlett
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Weirdos rock!
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Hi Scarlett,
It is good to hear how you're doing. You and Rich spend a lot of time writing / encouraging others, so it's nice to hear how you are.
Nancy,
I'm a bit over 2 mths post op. First week - yuck, I can't even remember. Week 2 - getting headaches (bad ones) esp when tense (like once I went out in the cold wind and i tensed up so much that I got a headache that lasted forever), but in week 2 getting out some and walking which made me feel better. Just had to take it easy and rest. Week 3 - thought that was the magical week where I'd feel all better. Some days I did, but still got some headaches and needed to rest. Started running again in week 3 (albeit very slowly). I think that's when I started driving. Weeks 4 to now - I think I've just progressively gotten better, but still get tired and require more sleep. I still have facial weakness, but that's improving.
I never had restrictions like Ernie, in fact, my doctor seemed almost too low key. I said "when can I drive?" "when you feel like it." "When can i run?" same answer. Then he said, "OK, wait till the 3rd week.
With gardening, if it's something ou enjoy and brings you relaxation, then hopefully that will be the same in your recovery. I can't imagine though that you'd want to dig up big bushes or schlep trees around to plant or anything like that!
Oh, and in week 11 or so, watch out, I'm going to be driving from NH to Boston, to Worcester to Boston, to NH etc. by myself! Hopefully that won't be a detriment to my recovery! Nancy, at the luncheon you and Scarlett should get the most comfy seats!
Keri
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Scarlett and Rich,
Glad to hear that the recovery is going well. You both are so supportive of other people going through this journey it has been an inspiration to me. Rich I hope that I can be as supportive to Anissa that you are to Scarlett. I have to say that I took your words to heart when you said that it would benefit yourself as much as everyone else to tell the story. I found the updating to be a great way to occupy time as well as get it off my chest. It is really neat to have all the support and information on this forum and it has been invaluable for us. I wish you both well on the recovery journey and I thank you for your inspiration to others.
Chris
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Okay, Keri. I'll try to stay mellow. I just looked out at my perennial bed and saw all the pruning that needs to be done. Guess that will have to wait. Somewhere I read that bending over, stooping, etc. are off limits for a while, Ernie, I think. But Scarlett, who has the same docs as I, was not given those restrictions. I don't want my brain to fall out or to get really bad headaches, so I guess I'll just experiment. I'm starting to think that managing swelling with steroids and watching for infection are going to be the biggest challenges . . . well, let's hope, anyway.
Last chores and packing today. Off to Boston tomorrow afternoon. Dave asked me this morning if I was feeling resigned. I said that I used to feel resigned, now I feel sentenced. But seriously, I'm gonna rock it, just like you guys.
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But seriously, I'm gonna rock it, just like you guys.
`nough said! :)
Be sure to ask your doctor about stooping/bending, just to be sure.
Ernie
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Even once the bending over is allowed again,your head will tell you if its a good idea or not as it may still get a weird feeling when one tries to do too much. One of my Fellow drs called it all ,no straining.
Do you have night lights for home as the dark will bother you at night,possibly even when not much else in the way of balance issues.
I iwsh everyone well who is having their surgery this week! Cheryl R
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Be sure to ask your doctor
Will I remember everything I need to ask my doctor? Probably not.
Cheryl,
No nightlights, just the moon when the sky is clear through the skylight, but the light of the clock is often enough to find my bearings if Kodi isn't sleeping on the floor next to the bed. I already have diminished balance control in the dark, so I'm used to it. I'll just get a catheter to go.
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I'll just get a catheter to go.
Now THAT was funny ;D A catheter "to go". Talk about a play on words!
Ernie
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Weirdos rock!
You got that right! ;D
But Scarlett, who has the same docs as I, was not given those restrictions.
But seriously, I'm gonna rock it, just like you guys.
Restrictions given before leaving the hospital… Well let’s just say they were pretty vague.
(Exactly as it is written)
· Do not operate any motorized vehicle for two weeks.
· No heavy lifting or bending for one month.
· Slowly increase your activity at your own pace.
· Do not operate any motorized vehicle nor drink alcohol while on pain medications.
As you can see, no weight limitations were given.
Nancy although the restrictions I was given were somewhat vague, it does say no bending for 1 month. Do as all before us have advised… Listen to your body!
It won’t do any good pushing to hard too fast.
We will certainly be waiting for Dave to update, and of course you know you are in our thoughts and prayers! I know you will do fine. You are as prepared as anyone can be in this situation. I do agree with Cheryl (hi Cheryl are you going to Maxwell’s?), I turn on all lights when getting up at night. It’s not worth taking any chances tripping over anything!
REST, REST, REST, especially the first week. I want to see you at Maxwell’s! As well as all my new friends I have made on this site.
Keri, careful driving all that distance. Can’t wait to meet you either.
Chris, Thank you for your kind words. I know how much stress Richie was in over my situation, and I’m so happy he had all the people on this forum to help him as well. Honestly, It helps to talk to people who are in the same situation. Hi to Anissa, hope she is feeling better everyday!
Hi Ernie, went for my ride yesterday. It was great. It did warm up nicely in the afternoon. Sorry you won't be coming to Maxwell's, but glad your family is going to Florida to see you.
Scarlett
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I have to say that I took your words to heart when you said that it would benefit yourself as much as everyone else to tell the story. I found the updating to be a great way to occupy time as well as get it off my chest. It is really neat to have all the support and information on this forum and it has been invaluable for us.
Chris
Hi Chris,
Thank you for the kind words.
Everone one on this forum is so supportive and caring. Each day I found myself ready to burst at the seems with emotions, and couldn't wait to get home and share the days news with our new friends. The hope and inspiration came from within the hearts of the people on this forum. If I was able to do the same you, that warms my heart :)
Like the thousands of spouses and caregivers before us, and the ones to follow, all we can do is support our loved ones the best we can. I know you are a kind heart, it's there in your posts. You and Anissa will be fine. Things may be different (the new normal), but I know you two are up to the challenge. Please give Anissa a big hug from Scarlett and I.
Nancy,
As Scarlett pointed out, you are about as prepared as one could be. Just give some thought to a lamp or flashlight "within reach" from your bed, a shower seat, and a cane to stablize yourself out side when the wonky head hits you hard.
Is someone going to be there with Dave? We will be thinking of him.
Know that you will be in our thoughts and prayers, and awaiting Dave's updates. And hope you will be up to atending the Brunch.
Keri, I've contacted the Massachusetts State Police and their going to clear the roads ahead of you ;D ;D Looking forward to seeing you.
JB, Cheryl, and Ernie I hope to meet all of you one day, our extended family :)
Take care,
Rich
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it does say no bending for 1 month
Oh, darn, I must've blocked on that one. Fine, I'll just scooch around on my butt then to do my weeding and planting.
Is someone going to be there with Dave?
Just my laptop so he can work. He will be a nervous wreck, though, so cheer him up if you get a chance. Remind him to eat, tell him to call his parents since he owes them a call, and tell him it's a great opportunity to get some work done since he's gonna be waiting on me hand and foot from now on. Actually, he's giving me a pedicure tonight, so how about that!
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Actually, he's giving me a pedicure tonight, so how about that!
I jealous! I didn’t get that!
Relax and enjoy it!
We will keep him company, don’t worry.
Scarlett
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Thank you, Scarlett. You've been an enormous help and inspiration.
Off to Brookline this afternoon. Last vacuum, pack up the dog to take to Mom's, finish my packing, and the long drive south in the pouring rain.
At least I won't be missing the nice weather!
Take care.
Nancy
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Nancy,
You will be in our prayers the whole time. Try to stay calm; I know it won’t be easy. You’re going to be fine.
Just a note: When I was asked to rate my pain on a scale from 1 to 10, I didn’t rate it higher than a 4 or 5. That was the headache/neck pain that got a 5 while I was in ICU. I found the morphine made my pain worse. If you see that a certain medication is not working for you, tell your nurse. They have different kinds they can give you. I found the combination of Percocet, Valium and an ice pack behind my neck helped me the most. Oh, I asked to for meds to help the nausea a lot too! Everyone’s pain is different of course, and I will pray yours goes towards the easier side like mind did.
We will be waiting for the updates! :-*
Scarlett and Richie
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Great advice, Scarlett. Thank you. You didn't have the hip pain, right? I got really nervous yesterday, but I think I'll make it through today and just go in to shock tomorrow morning. :-[
nANcy
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Nancy,
No hip pain for me at all. All pain was around the head area, and of course the nausea. I did have the lightheadedness before surgery, so I don’t know if that made a difference or not, but I didn’t have the double vision some have experienced. It was more comfortable to look straight for the first few days rather than moving the eyes back and forth. Give yourself time to adjust.
Scarlett
P.S You won’t have time for shock. They move things along pretty fast. And you’ll have all kinds of wonderful people there talking to you. Dave will be allowed to stay with you in the first pre-op area till they are ready to move you.
Your Gonna Rock This! :)
It will be such a great relieve to have it over with! Trust me.
Scarlett
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OK . . . trusting.
nANcy
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Rich,
I'll check for Scarlett's update, but how is her pain level, neck, head?
Thought an update on my situation would be better answered here.
This Wednesday will make 4 weeks post-op for me. :o
I’m still dealing with severe headaches at nighttime. I have noticed its usually after entering REM. I have never been one who remembered dreams (ever), but now when the headache wakes me up, I remember the dream (they are usually pretty stupid ones). I’ll take ½ a percocet and it’s usually gone within ½ an hour. My neck is still pretty stiff for some reason, and I take a Valium before bedtime to try to get some sleep at night.
I’m still having shooting pains in my AN ear (and also around the incision area) occasionally, which I thought should be gone by now. I will ask Dr. Barker when I see him on the 27th.
I do have a question for everyone…
How do I know if I need to go to PT? I seem to “get along� just fine, but obviously I’m not 100 %. Yesterday I got really dizzy walking up and down the grocery store isles looking back and forth. Should I go for the evaluation and see what they tell me? I was told I need the doctors permission before PT, so do I wait till the 27th to see him?
I also need some advice about returning to work.
I’m really nervous about returning to work. Unfortunately, I had to start a new job about 4 years ago after the company I was with for 25 years closed it’s MA plant. I had a desk job at that company, but I’m not so lucky with my new company. I work in Quality Assurance for a wire and cable company and it requires constant heavy lifting (anywhere between 20 to 75 lbs) and lots of spinning wheels that I need to put the cable onto before testing. I’m on my feet the entire shift. They are now restructuring the work hours. Starting in May they go to 12-hour shifts, 2 days on, 2 days off, 3 days on etc. 7 days a week. Being there such a short time, I know I will be given the night shift 6 P.M. to 6 A.M. (that is if I’m not laid off). This place doesn’t believe in “light duty� or returning part time. Any suggestions on how I can handle this? I wish I could get another job, but who in the world would hire me now? ???
Scarlett
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Scarlett,
I was provide PT and OT scripts when I discharged. They thought I was doing above average and weren't worried. Since I have a 4+hour RT for health provider coverage, they wanted me to be able to pay out of pocket if it would save transport $$$. I would wait; four weeks is not very long for recovery (experienced one that I am ;) ).
I'm so down about all your headache and other pain. Someone on the forum recently mentioned a neck pain care referral from Barker. Call him or Heather. Do you have her pager number?
As I mentioned PM, that job is inappropriate for you. From my experience, communicating with you, I'd hire you in a flash. No one needs to know anything about your health concerns. The economy will come back, and you will flourish. How about health care? Find something you are passionate about and go for it. You deserve and can do it!
Nancy
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Hi Everyone,
I just wanted to let everyone know I’m still here. I haven’t posted for a little while, but I have been lurking in the back round all the same.
Tomorrow makes 6 weeks for me! WOW! I was supposed to have seen my doctor yesterday for my 6-week check up, but it was canceled on me and now I go May 7th.
Rich and I have been busy trying to figure out what our work place is doing. They made me sign papers saying I’ll work 12 hr shifts, and work whatever shift they want to put me on etc… I tried to tell them, I don’t think I’ll be able to do that for a while, but they insisted I sign the papers anyway. They are changing Rich’s hours as well. He was supposed to change starting next week (they moved his work week up one day, so that he starts on Sunday night, and is done Thursday at 6 AM) so we scheduled my appointment to a Thursday afternoon. This morning he tells me, they are postponing the change maybe for another week or two! So now he will have to lose 12 hours pay in order to take me to my appointment!!! >:(
Short-term disability says they need papers from the doctor or there will be a gap in coverage, and we’ve also been trying to get the doctors office to send them what they need!
Combine all this with the everyday headaches I’ve been getting, I hope you understand why I haven’t been posting much. It’s hard for me to try to stay in a positive mood and concentrate on my recovery with all this nonsense going on!
I was recently reminded that I’m not always going to have good days (either physically or emotionally), but that should not stop me from letting my new friends know what’s been going on with me.
Thank you Keri, for reminding me of this, and that it’s okay to post on the bad days too.
Best wishes to everyone.
Scarlett
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I had the impression at the brunch that your employer was going to be caring and flexible. I guess they changed their tune. I'm sorry to hear you are having bad days. I'm sure the doctors will provide whatever documentation you require. If they don't, let me know, and I'll have a word with them!
I hope you can get a handle on the headaches soon. That must be very frustrating.
Thinking of you,
Nancy
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Combine all this with the everyday headaches I’ve been getting, I hope you understand why I haven’t been posting much. It’s hard for me to try to stay in a positive mood and concentrate on my recovery with all this nonsense going on!
I was recently reminded that I’m not always going to have good days (either physically or emotionally), but that should not stop me from letting my new friends know what’s been going on with me.
Dear Scarlett.
Please DO post on those not so good days.That's the main point of this forum! I'm sure a lot can relate, and that helps you feel better, maybe.
Sorry to hear about the headaches. I personally had headaches for 6 weeks post op, and they did go away. I went through a couple bottles of vicodin and then weaned myself to tylenol/motrin .
I'm not familiar with short term disability and such but get that letter from your doctor! You should not be working 12 hour shifts if you can't do it.
I'm almost 3 years post op and just the past few days have been feeling awful with dizziness/disequilibrium problems. Oh no I have another AN brewing!
No, turns out it was just hormones, which exacerbated the disequilibrium that I will always have.
One day at a time :)
Hope you're feeling better :)
Maureen :)
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I had the impression at the brunch that your employer was going to be caring and flexible. I guess they changed their tune.
I beginning to believe they know not what they do!
I'm not back to work yet and I'm sure the doctor will give me what I need to extend my leave until I feel ready to go back, but all this back and forth stuff is stressing me out!
I personally had headaches for 6 weeks post op, and they did go away. I went through a couple bottles of vicodin and then weaned myself to tylenol/motrin .
I'm almost 3 years post op and just the past few days have been feeling awful with dizziness/disequilibrium problems. Oh no I have another AN brewing!
No, turns out it was just hormones, which exacerbated the disequilibrium that I will always have.
One day at a time :)
Hope you're feeling better :)
Maureen :)
I'm so hoping time alone will rid me of the headaches. I have lived with them long before being diagnosed with an AN, so relief from them after brain surgery would be nice!
I also wonder if I will ever be free of worrying about this. Like you said about fearing that another AN is growing when symptoms kick up.
You're words are right on.... one day at a time.
Thanks,
Scarlett
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Hey Scarlett,
I'm following along in my typical fashion.. .and checking your updates to see how you are doing. I'm sorry to hear work is being a real pain in the petunia! Just let me know and I'll take my wooden cane to them! Sounds like the dr is working closely with you and please keep us updated on that!
My sister first shared with me, when I received my initial health ecch! years ago (not my AN) that "you are entitled to your good days and you are certainly entitled to your 'not-so-good' days...."... and she's was right. As you note, there are many that try to put the AN journey behind them (even knowing that we need to be monitored down the road for potential regrowths... all part of this journey that overcharges for the ride!) and many that can't. I also believe in taking things one day at a time... "day by day, inch by inch..." is my mantra that many here know that I hold dear to me. You actually met me on one of my "not so good" days, but like you, we try to muster the mental strength to forge forward, as we refuse to let it beat us down.
I know you are having a tough time with the headaches and not sure if you have perused the Headache forum here. May be worth a peek if you haven't. I'm working with Faulkner headache clinic in Boston now for mine, which are non-AN related, but maybe seeking out a headache specialist may be an idea down the road.... just a thought.
Hang in there.... hugglez to you and Rich.... and I'm thinking of you! :)
Phyl
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Hi, Scarlett ~
Like everyone else, I'm sorry to learn of your recent and ongoing stresses, especially the headaches. Your work situation sounds all-too typical. I won't belabor that point except to say that I hope you'll be able to get things straightened out before long and relieve some of the stress you're dealing with, which can't be helping your headaches.
Keri gave you good advice. Although we love to read success stories and positive news, we're an AN support site. The operative word being 'support'. That means we try to offer solace and support to every member who needs it, no matter their situation or issue. We support good recoveries and clear MRI scans as well as surgery or radiation anniversaries, birthdays, etc. We also support folks who struggle with any of the many complications ANs and AN surgery or radiation can bring. We honor both good days and bad. Those who need a place to vent can always come here and receive attention as well as empathy from those who've 'been there'.
Frankly, Scarlett, I wish every post could always be totally positive - but that is simply not reality. Besides, if every AN patient had a quick and complication-free recovery, we probably wouldn't need this website or these message boards. Then what would I do? ;)
You (and Rich) are valued members here. Thanks for posting and always feel free to post again, no matter the reason or whether or not everything is going well.
Jim
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well said (as usual !), Jim.
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Hello Scarlett and Rich!
I'm happy to hear from you guys again, but wish it was under better conditions. Stress is the last thing you need added to the recovery. I hope you never feel like you shouldn't post when you are feeling down. I also don't get on as often as I used to, mainly because of work, but I am glad I got on now to let you know we're still thinking about you guys and prayers are still going out to you both.
Ernie
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Hi Scarlett,
Seems I haven't said hello to you for a while. I hope you are able to hire Nancy as your employment counselor, her advice seems very good. I don't think the long hours and heavy lifting job sounds right for you either. Despite the economy, there are still jobs coming up, you might be surprised what you can find.
I also hope you can deal with the headaches, both real and figurative, and get the paper work stuff figured out. Nobody needs stress in their life.
So other than all that, though, you're doing fine, right? :)
Steve
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Hi Scarlett, I didn't want to read along and not post. I'm sorry that you are still having pain, that just stinks. I hope that you can get some answers at your appointment next week, my 5-week is the same day. Just wanted to let you know that I'm thinking about you and Rich and praying for things to come together with both your jobs and your health. I've also been a kind of a lurker these days, I'm glad you "outted" yourself. Keep in touch!
Anissa
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Thanks Everyone,
As always, your support means the world to me.
I think the work situation is what is really bringing me down the most. I found out last night (through the grapevine) that when I am ready to go back, I will have to work 12 hr shifts from 6 PM to 6AM (2 days on 2 days off, 3 days on 3 days off etc...)! I’ve never worked nights in my life! :( I also found out that there are two jobs (positions I asked personnel for) that they gave to other people. >:( I’m thinking they want me to quit, but for now, I just can’t see anyone hiring me after having a brain tumor. It’s not like I could hide the fact. For one, I’d never pass the physical/hearing test required by new employers. We also need the medical insurance!
With this schedule and the one Rich is on, we will get to see each other every other weekend! I feel the pressure to try to figure something out soon.
Once I do, I’ll be home free!
In the meantime, I appreciate all your kind words and support. I’m sure my head would have exploded by now if it weren’t for you guys/gals.
I will keep you updated on my situation.
Thanks again,
Scarlett
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Well, this just rots my socks (as my sister-in-law who moved to TX has taught me to say). I'm thinking Dept of Labor here and a good lawyer. I'm really pissed (can I say that, Phyl?). If all of you who have not met Scarlett had any idea what a sweet, caring, considerate, understanding, selfless person she is (and Rich, too), you'd be marching on in there with me and giving this employer a piece of our minds! They are behaving as if they want you to quit. What they are doing must be against some law.
Certainly, if Rich stays there and you find a more suitable source of income, you will still be covered by his insurance plan. No? And I've never had to take a hearing test for employment. No one needs to know you had brain surgery. No one can tell by looking at you, and your headaches are the only remaining symptom, aren't they? Plenty of people have chronic headaches. Have you glanced at employment opportunities in your area?
I'm so sorry you are having to deal with this unpleasantness. You don't deserve it.
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but for now, I just can’t see anyone hiring me after having a brain tumor. It’s not like I could hide the fact. For one, I’d never pass the physical/hearing test required by new employers. We also need the medical insurance!
I feel the pressure to try to figure something out soon.
Scarlett
So much to worry about- I feel for you. With the economy the way it is, job security is not always easy. I don't remember what it is you and Rich do for work..
I gather your work is labor related??
My instincts say- get the short term disability or whatever, and keep your mind open to doing something different. Sounds like you are being put to the "back burner" at work. >:( >:( >:(
If you decide to go a different route in work and apply for a different type of job, they don't need to know that you had a brain tumor removed during the interview process. That would make them biased.
When I got settled here in WA, I applied for a nursing job-the first place did not hire me.(That has NEVER happened, being a nurse)>
I stupidly mentioned something about my AN removal and facial paralysis. I felt self conscious about my appearance, and maybe my insecurity showed and they used it against me.
Second place, I did not mention a thing. I got hired and am doing just fine.
Yes, I am deaf on one side, but that was not disclosed until AFTER they hired me.
One day at a time... ;) It'll work out.
A lot of people go a different route with work after this surgery because of limitations, so who knows, maybe it is time to do some soul searching for 'something different.
Best wishes,
Maureen
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Hi Scarlett,
Rot my socks too! This makes me mad as well. Like Nancy, I'd hire you in a minute. I could really see you doing something people related for a job.
I'm so sorry that this is adding to your stress. Plus I can't imagine having a schedule where you and Rich would only get to see each other every other weekend! Crazy!
Regarding the brain tumor / interview thing.. your brain tumor is past tense. I don't see why it would have to come up either. At the same time, I wouldn't want any insurance issue to compromise your follow up appointments, MRI's or anything like that. I'm no HR expert, but it doens't seem like the surgery you had in the past for a brain tumor that is now gone should affect your job prospects.
I'll pray for you to have peace and comfort and direction about what to pursue.
We all care about what happens with you!
Keri
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Hello,
Well, my socks are rotted too! Employers can be very, very, very bad sometimes. We have heard that scenario before on here. Not often, but it happens. Sounds like they are putting you in a position where you will quit them, since they can't fire you. Bad employer! This should be against some kind of law, but it probably isn't. I do hope this works out for you. I hope your headaches go away. Talk with Cap't Deb about headaches. She has a lot of good answers on that. And I've put a hex on your employers, or the evil eye, or something. They should be ashamed.
Sue in Vancouver USA
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Hi Scarlett and Rich,
Scarlett, don't you have a doc appt Thursday? Let us know how it goes please! Nice to have you and Rich posting again! Maybe I'm wrong about the date, but I think you said Thursday...
Hope to talk to y'all soon,
Keri
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And I've put a hex on your employers, or the evil eye, or something. Sue in Vancouver USA
Thank you guys for making me laugh again. I love the “rot your socks� expression too! I think I’ll be using that a lot! :D
I have calmed down some about the job. I have decided to just take it one day at a time. I know if I do go back there, it will only be until I find something else that I am more passionate about (unless of course they do come through for me)! I am under Rich’s insurance, so as long as he is there I will be covered.
I do have my first post-op check-up tomorrow afternoon. I’ll be interested in what he has to say about the headaches. I hope they are just related to the stiff neck and maybe PT will help with that. I also have been having the shooting pains in my AN ear and head since surgery (yesterday and last night were pretty bad). When I mentioned those to him while still in the hospital, he said those should go away! Maybe he’ll be able to tell me when? I’ll keep you posted on how it goes.
Maureen, to answer your question, I work as a Quality Assurance Technician for a wire and cable company. Unfortunately it does require a lot of bending and lifting. I wish I had a special talent like so many on this forum! I do play guitar (although I haven’t picked it up for a while). Maybe I should dust it off, grab a hat, and go play on some street corner for tips??? ;D ;D ;D
Scarlett
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Cheri, I know exactly how you feel with the repeating of all of what we have been thru. I look pretty good if you see me in in a carpeted area inside. This the worst when stop in to see my co workers and they tell me to come back to work. Sorry, My balance would be off so fast after running up and down the halls. They are never with me outside or in tiled areas or bad weather as even walking on a wet street can throw me off. esp if dusk or dark out. Forget ice too! Not bad but just enough to look not right or if right then I feel not right. Have to have a rail on steps too. In my house do fine if don't turn fast. Have nightlights for night which are sure needed.
I have had the oldest granddaughter ask why I walk funny. I am just grateful I can walk,but would love to feel normal again. Cheryl R
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Cheri... how old is your daughter? sounds just like mine!
Scarlett and Rich - what happened at the doc on Thursday? How are you all doing?
Hope to hear soon and hope all is well!
Keri
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If I could make it all go away, I would. For now, we'll all continue to be here for one another. What a blessing that is in itself!
Luv to all,
Cheri
I may not post every day, but I will always come here... because the way everyone cares about each other truly is a blessing!
Just a quick update to let you know all went well with my 1st post-op check-up last Thursday. The doctor wants me to go for my base line MRI May 31st, and then every year after that. I will also be going for VPT evaluation 5-29-09 to see if they can help with the balance issues as well as the stiff neck. As far as the headaches and the shooting pains in the AN ear/head, he wasn’t very clear about when I could expect them to go away. What I need is time and patience. Slow and easy wins the race right?
I hope everyone had a nice Mothers Day!
Scarlett
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Scarlett,
I fell behind on everyone's posts over the past month due to being away and other issues. Sorry to hear your emplyer is giving you and your hubby a hard time. I hope things get better there.
As for recovery, slow and steady is the right idea. Recovery is definitely not a race and requires lost of rest and patience.
Best wishes,
Wendy
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Scarlett,
Been thinking of you, hang in there, I go to work everyday and many of the days I don't feel well and I still W&W. Keep posting, we are all here for you!!
Best wishes,
LisaP ;D
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Hi everyone,
It’s been a while since I’ve updated on my progress, so here goes:
I had my 1st MRI, since surgery, on May 31st. I haven’t heard from the doctor’s office, but I picked up the report last Friday and from what I read all looks good, “unremarkable� was the term on the report. I wasn’t expecting any evidence of tumor left since the doctor said they got it all, but I was anxious just the same.
I have also gone to two Vestibular Therapy sessions. My physical therapist has been giving me exercises to improve my balance as well as working on my neck muscles. I have to say, I think it’s really helping (although I have had severe headaches the night after each therapy session). I can turn my head much easier now and my eyes play catch-up much quicker! The headaches throughout the day are still there, but the nighttime (REM) severe headaches are getting further apart.
I’m also experiencing a lot of pressure in my AN ear, and some days in both ears. I’m also still getting those sharp shooting pains in and around the AN ear too. Don’t know what that is all about!! Have any of you experienced this too at 3 months out? ???
All in all, I can’t complain. It’s going to take time.
Life is good!
Scarlett
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Hello, Scarlett ~
Good to see you posting - and with positive news, too!
I'm pleased to learn that your MRI was 'unremarkable', as you expected. Your one-sided pain at the former site of your AN and slow-but-steady advances in recovery seem quite normal and similar to what I experienced on a slightly shorter timeframe. I didn't have the headaches but I trust yours will dissipate, soon. You have the exact right attitude that all will be resolved, in time, and it will. Indeed, life is good. :)
Jim
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Hi everyone.
Just wanted to let you know I got the results for my 1st yearly MRI and Dr. Barker said everything looks fine. Yippy!! I’m good to go for another year! :D
I had a chance to discuss some of my concerns, namely the continued stabbing pains I’ve had in my AN ear and head since surgery and daily headaches and pressure I get in my head and both ears. He gave me hope that there is still a chance that these issues will resolve themselves over time, but he also dashed them in the same breath, telling me they may be part of my “new normalâ€. He didn’t seem to feel that any of these issues were indicating something more going on, so that’s a good thing I guess. I did have one issue that he said he had never heard of his AN patients complaining of, and that is that my right (AN side) eye aches all the time and feels like it’s being lightly pulled downwards. I have seen my eye doctor earlier this year, and all looks normal with the tests they did. So… ???
On the headache front:
I am currently seeing a headache specialist, Dr. Autumn Klein at Brigham and Women’s (thank you Phyl), who has me on 900 mg of Gabapentin and 100 mg of Lyrica daily. I have been taking the Gabapentin for about 6 months now. I gradually worked my way up to the 900 but when I tried 1200 mg, I had adverse reactions and I still had the headaches so I went back down to the 900 mg. My doctor wanted to add Lyrica to the Gabapentin right then and there, but my insurance company decided that before they would approve the Lyrica, I had to try another neurontin first. I went on Topamax for a few days, but that immediately made me feel worse. I had a terrible headache that was NON-STOP for 4 days and not even my trusty Ibuprofen would ease it. I also had some tingling in my fingers. Once my doctor submitted all paperwork assuring my insurance company that I did try another neurontin, they finally approved the Lyrica, and I have now been on it for 3 weeks.
Since my surgery last year I have also gone through VPT/PT with Casey Hagan at MGH in Boston. I found going through vestibular therapy to be quite helpful in making what I considered “good enough†balance to a hardly noticeable (except to those who know me well) stagger every now and then. Gaze stability has also improved tremendously with my homework of “X†exercises. Casey suggested I see a physical therapist closer to home (we’re about a 1 ½ to 2 hour drive from Boston) for my neck and upper shoulder muscle problems. I am currently seeing a physical therapist now that is working wonders with my Trapezius muscle. She is also doing CranioSacral therapy on me.
I don’t know if it’s the Lyrica, Physical Therapy, the CranioSacral Therapy or a combination of all of them, but I feel I have made some good progress lately. With the exception of a few days last week, I have been able to go for longer periods before the headaches and pressure become just too much. For the most part, pain levels are staying within tolerable levels so that I don’t feel the need to take any OTC meds to help me through.
I feel like I have turned a corner (knock on wood).
It’s been a long year in some ways, but it has also been a good year too. I have so much to be thankful for… a wonderful husband, a family that supports me, and all of you wonderful folks here on this forum. I’ve said it before and I’m going to say it again, I don’t know what Rich and I would have done without you! Thank you all for everything you do. :-*
Scarlett
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Hi,
I was very encouraged reading your post and very happy your one-year MRI brought good news. That's so exciting! I'm due for my one-year MRI in July; can't wait. I hope you continue to improve and of course, I'm glad to hear you feel confident you've turned the corner...! I'm going fast and about to turn left myself...see you there. Best wishes for continued success and good health!
Take Care!
;)
Doc
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Hi, Scarlett.
You sound very upbeat, and that makes me happy for you. But you still have an awful lot to deal with and continued treatments, so I'm sorry for those troubles. But as you say, it could be much worse.
I've had my three-month follow-up canceled three times, and it's been 13 months at this point. I guess I should call and get an appointment with both Barker and McKenna and get the MRI out of the way. Somehow, I just don't feel like it.
I hope you're feeling better every day.
Hi to Rich,
Nancy
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Scarlett~
So glad that you got a good report & that things seem to be getting better. Hopefully you can get these headaches under control &/or gone forever!
K ;D
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Hi Scarlett (and Rich ;) ).
I hope those headaches resolve themselves eventually. Nobody wants to be on pain meds all the time. My headaches peaked in June and have since really toned down a lot. I still get pretty bad ones if I do a lot of physical activity, but a Tylenol before starting is all I need.
I'm glad you finally got to talk to your surgeon about some of your other concerns. The eye thing is strange. I'm sure it's related to the AN surgery though since it only occurred after. I wonder if that could be the catalyst to some of your headaches?
Dr. Bartels first told me that I would only need an MRI every 5 years. Unfortunately after seeing the results of the one year MRI he decided I should have them done yearly. There is some linear enhancement which is most likely just scar tissue, but he wants to be on the safe side.
Hope you are doing well and enjoying the change of seasons up in New England! I miss that very much.
Ernie
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:) :-* :) :-*
What do I say Scarlett? :) "Day by day, inch by inch.....". Glad to hear the meds are starting to help the cause... and thrilled to hear you are hanging tough! Pls give Dr. Klein my best (I need to book a follow up with her) and sending those massive healing hugglez to you and that fine dood of your's!!!!!!
xo
Phyl
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Scarlett -
glad things are looking up and you've turned that corner.
Congrats on the clean MRI ;D
Jan
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So you tried Topamax? That med takes weeks to kick in and you have to start with a very small dose (12mgs) and work your way up. A lot of people give up on it too soon. I had pretty good results with it and it let me drop my gabapentin intake from 2700mgs down to a screaming 1800 mgs. It can have a lot of side effects, though--it made me real emotional and weepy at first.
I've done some research about gluten-sensitivity, inflammation and migraines over in the headache section. I'm going to be the guinea pig for a gluten-free diet.
Hope you continue to make progress, Scarlett dear. I know it can be frustrating.
Hugs,
Capt Deb(http://i235.photobucket.com/albums/ee60/Captdeb_photos/pirate-3.gif)
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Scarlett,
Happy the first year MRI is fine, but very sad about the headaches. I have one now so I do feel your pain. I've been on and off topamax, tegretol and gabapentin for the last few years. HATE THEM with a passion!!! The side effects are nasty. There is a drug I haven't tried baclofen, so I think I will give it try with all of my fingers and toes crossed. Some days I honestly feel none of these drugs do a dam thing other than make me foggy and more miserable. I don't have any answers. I can't even enjoy a drink or a glass of wine because of the drugs and knowing the booze is a trigger. HICUP :'(
Anne Marie
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Scarlett,
Congratulations on the clean MRI, but I'm sorry to hear about your headaches. I hope you get some relief.
Best wishes,
Wendy
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Scarlett,
I just wanted to say I agree and it does seem you have turned a corner. Hopefully you keep trending upward and remain that way until the pain is gone. Congrats on your 1 year mark...nothing better than starting fresh in a new year, how's the Lyrica working on the headaches?
Thank you for the update,
Liz
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Thank you everyone.
I just had a 5 day stretch without having to take anything besides my daily Gabapentin/Lyrica. I was not headache free by any means, and with the help of my trusty ice pack and heating pad, pain levels were well within the tolerable levels. A stressful day yesterday is what I believe triggered this mornings headache.
Inch by inch, Phyl!
Doc, I’m happy to hear you’re ready to turn that corner too. It’s a good feeling to actually see (and feel) some progress. See you there!
Nancy, I hope you do call for that MRI. I know you’ve had a lot going on in your life since surgery, but don’t forget to take care of yourself as well. I missed you at the brunch and hope to see you and Dave at the next one.
Ernie, It was great to meet you at the brunch. I hope you can make it to more of them. If you plan on coming to the fall ones, you’ll be able to enjoy some of the season changes you miss so much. There is nothing like Autumn.
Capt Deb, I’ll be watching how the gluten free diet works for you. Trying the Topamax was to appease my insurance company. My doctor wanted to go right to the Lyrica, but since it is so expensive, the insurance company wanted to try the other neurontin first. By the 4th day of feeling horrible, I was ready to give up on it. My dosage was 25 mg once a day.
Speaking of diets… I need to get on one myself! This sedentary year hadn’t helped my waistline any! ::) I’ll have to join the “Let’s walk! or run! or something…†thread. ;D
Anne Marie, my wish for you is that you are able to find a right combination of treatments that will work for you. Don’t give up, there is always hope. Have you tried Lyrica? I really don’t know if it’s that or the PT for my Trapezius muscle (and Craniosacral therapy) since all started on the same day, but maybe it would be something to try as well?
Liz, as stated above, I’m not sure which treatment was the force behind getting me around the corner, but I plan on sticking with them all for now.
I thank you all (Doc, Nancy, K, Cheri, Ernie, Phyl, Jan, Capt. Deb, Anne Marie, Wendy, and Liz) for your well wishes, and know that I wish everyone on this forum pain free days! :-*
Scarlett
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Thanks for your concern and encouragement, Scarlett. I called today to get the MRI scheduled. Too risky not to. Wishing you well, N
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Dear Scarlett,
Congrats on your clean MRI!
Sounds like you have had quite the busy year- :ot is sometimes a full time job just taking care of ourselves isn't it? I applaud and understand your perseverance and dedication to getting yourself to feel better and getting rid of those headaches. Our lives will never really be the same. Sometimes it's like walking a tightrope. So fragile. Small triggers can affect everything.
No matter if it's headaches, tinnitus, wonkyness, paralysis. It's like we all have our own unique burden to bear.
Wishing you only better days, now that you are past the one year mark. I would imagine the cranio sacral therapy is helping a lot along with PT.
Acupuncture is also a good idea, but not for everyone. Let us know how your headache progress is coming along:)
Maureen
And Nancy, congrats on making your MRI appt!
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Hi, Scarlett ~
My apologies for initially missing your latest update (I've been incredibly busy) but I'm delighted to learn that not only are you seeing some progress in resolving your various issues (balance, headaches) but also that you received an encouraging 1-year MRI report. Thanks for your post and your kind words. May the next 12 months see even more progress for you and a return to the normalcy you deserve.
Be sure to say "Hi!' to Rich for me. :)
Jim
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Nancy, I’m so glad you got the MRI scheduled. Please keep us posted. Hope you and Dave have been enjoying this nice NE weather.
Thank you Maureen for your kind words. It certainly is a tight rope we’re walking! It’s all about re-learning what works for you and what doesn’t anymore. And then as more time passes, to re-learn it again, as things get better and better. Patience is a virtue!
Jim, thanks for the well wishes. No need to apologize for missing a post. You’re always there for me and for so many others! Hi to Tina.
Scarlett
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Hi Scarlett,
I've been away from the forum way too long and don't know much of what's going on. I'm so glad that things seem to be going better for you! I'm really glad you feel like you've turned a corner. And I wish I could make it to another brunch!
Take care! You and Rich are very encouraging to others here!
Keri
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and... we would love it if you joined the let's walk, run something or other group. it's a pretty laid back group and is encouraging!
keri