ANA Discussion Forum
AN Community => AN Community => Topic started by: Debbi on July 22, 2008, 12:44:43 pm
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Hi all-
I just got a very quick email from Marci's friend, Andrea, saying that she made it through surgery very well and that she is still in recovery. Here's what Andrea said:
"The surgery was successful and in fact went as well as it possibly could have. She's out of surgery (and is offering ARS tickets to everyone in the vicinity!)."
I will post back as soon as I hear anything else. I'll also copy everyone's comments into one email to Andrea so she can read them to Marci later.
Marci - we're all cheering you on!!!!
Debbi, Marci's press secretary
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Thanks for the update Debbi. It's good to hear that she is out of surgery so EARLY! I was in Marci's town this morning and she has been in my thoughts......Go Marci.......
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Thanks Debbi.
This is excellent news - very encouraging. Apparently, prayers have been answered. We await further news but are quite pleased with what we have, now.
Jim
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Marci
You are my hero! I have been thinking about you all day and am so glad your surgery went well and that now you can start recovering. Take care of yourself and let your body heal. I will keep thinking of you and look forward to more details about your progress.
All the best,
Kathleen
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Marci - Great news! I'm glad the surgery went well. Now, let your body heal. Take it easy as long as you can! :)
Brian
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Hi Marcii -
Conggrats! It sounds like you are dong great and I am very happy to hear that !! I look forward to reading further posts about your experience. Wishing you a smooth and speedy recovery.
Wendy
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Debbi -
I forgot to say thanks for the update on Marci!
Wendy
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Way to go my surgery sister. Looks like the two of us kicked some butt today!!
Anne Marie
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Marci -
welcome to postie land ;D
Glad to hear things went well. I was thinking a lot about you and I'm so glad that Andrea updated Debbi so fast - it takes away a lot of our anxiety here - and we're not even the ones who had the surgery today :D
You'll be back among us and posting again before you know it.
Get lots of rest!
Jan
- many thanks to Press Secretary, Debbi. Hey, Debbi, how does this salary compare to the moderator's salary? I've been thinking of taking on another job to pay the bills ;)
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Marci,
Welcome to the other side. It looks like things went well, and we'll be waiting for further updates. Quite a trip, isn't it? Hope to "see" you back online when you feel up to it. May your recovery be swift and uneventful!
Hugs,
Tammy
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Please give Marci a round of wild applause for me (she asked for it).
Steve
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Yea, Marci!!!!! Please keep us posted. It won't be long before you're back running and singing.
And Jan, I'm still waiting for those checks to roll in. I'm thinking that you may not want to give up your day job (as we say in the HWood biz).
David
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Debbi
You do a great job as press secretary. For my surgery next week, should I have my Vice President of Communications (a totally unpaid position to my very bestest friend!) contact you, or should she just go direct?
I am still a newbie and trying to figure out the ropes, although I am only 7 days from surgery. I still cannot beilive I joined this forum just one month ago and here we go to surgery next week!
Kathleen
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David -
trust me, I'm way too deep in debt to give up my day job :P
Jan - wildly applauding for Marci ;D
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Marci, I hope you will have on your new PJ's and slippers on soon and post a picture. You know how much we love pictures, especially your belly cut. I'm so glad that everything is going well soon.
Kathleen, I gave my best friend my login info so she could post my update. She was happy to do it. She had already heard so many stories about how helpful this forum was that she was glad to do it.
Julie
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Great news, everyone!!! Here's Brian's email to me last night - read it and smile!
just an FYI.
It turned out not to be an acoustic neuroma, but a trigeminal one; the tumor grew out of this nerve. As a result, what looked like an awful mass on the MRI was in fact located in a terrific place; as a result, the surgeons were able (a) to preserve the vestibular nerve, (b) remove all of the tumor; (c) leave intact (that is, avoid) all of the cranial nerves. Hence, a tumor roughly 4.0 cm in size was removed in its entirety, with no paralysis of any of the nerves. Truly, truly a remarkable outcome. As a result, the surgeons feel strongly that radiotherapy is not needed at all, and that all of the tumor was removed. [We would've been delighted with a "debulking" of 80% followed by gamma-ray treatment.)
As a husband who has watched his wife go through such a a difficult and terrifying ordeal, I want to say that the a-n website was a remarkable source of support and information for Marci. I can't tell you how grateful I am for the support, and how thrilled we are with the outcome. When I left Marci this evening (about 9:00 pm) she was in pain, but otherwise fabulous.We are, indeed, lucky.
So the news is wonderful! I have just copied Brian on all your posts so he can read them to Marci in the hospital - I know they'll make her smile. Stay tuned ...
(And, actually, this job pays great just in terms of feeling good and doing something to "pay it forward". This is what so many of you did for me so recently.)
Debbi, beaming
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Marci,
I'm very happy to hear you have made it through surgery and you have all your cranial nerves too! I must say your trigeminal tumor is the first time I've heard about one and will be looking this up to educate myself more. I hope your pain levels decrease quickly as having a craniotomy AND pain is tremendously difficult to bear. I pray you heal quickly.
Brian, you are able to breathe easier now knowing your loved one made it through surgery, I know how hard this time was for my husband as he felt completely helpless until we arrived home then he became quite creative in helping me through the tough days as I'm sure you will too!
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Marci -
sounds like things went wonderfully. I have heard of trigeminal tumors, but I'm not very clear on what they are and how they differ from an acoustic neuroma.
In any case, glad to hear the surgery went so well - no paralysis of any of the nerves is excellent! ;D I don't think you could have asked for a better outcome!
I hope the doctors are able to manage your pain and that you are home soon.
Many thanks to Brian and Debbi for giving us this update.
Jan
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Oh, and btw, Brian was on his way to the hospital this morning with a chocolate croissant for Marci! There's a man who knows exactly what his beloved needs!
Debbi
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That does sound good.
Jan, I think it just means the tumor grew off of the trigeminal nerve instead of the vestibular nerve (where a classic AN starts). I hope it doesn't mean trigeminal nerve issues; it sounds like they got it out cleanly, which is great.
All the best, Marci!
Steve
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Marci,
I'm so happy your surgery was so successful. Rest, heal and keep kicking butt.
Thanks to your husband and Debbi for all the updates.
Anne Marie
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Marci
I have the biggest smile on my face for you with this wonderful news. I celebrate your success and know that you are recovering and healing after your surgery. I take a deep breath knowing that my surgery is one week from today and I want to share in your successful outcome. Let us know how you are doing when you feel up to it. Until then, rest.
All the best,
Kathleen
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debbi
thank you SO very much for this update... and Marci..... GET WELL SOON!!!!!!!!!!!!!!!!!! Healing huggles to you!!!!!!!!!!!!!!!
Phyl
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Marci -
So glad to hear the surgery was such a success! Rest, Relax, and enjoy the croissant!
Tammy
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Marci,
I am so happy for you. It sounds like you made the right decision about surgery. Your story sounds similar to mine in that the docs thought they were going to remove one type of tumor but ended up removing a different kind and with great results. It is great to know that you may not have to have radiation.
Just take it easy and rest. Hope you get good pain meds soon so you are out of pain. I hope you enjoyed that croissant.
Julie
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Marci,
Welcome to postieland. I'm happy to hear the great news. Let the healing begin.
Syl
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Just got another update from Marci's friend, Andrea - and here's what she says:
"Hello again everyone,
Marci is working through the post-operative period beautifully well.
She’s in pain, of course, but her spirits are high and her determination very much intact. They are moving her from ICU this afternoon, and are also doing a routine post-op MRI. With any luck, she will be out of the hospital very soon.
To fill you in a bit, the surgery was completely successful. The surgeon was able to remove the entire tumor, and without any apparent trauma to the proximate nerves. We will be eternally grateful for the amazing talents of her surgical team at UH.
Thank you again for all of your tremendous support. I know it has meant an inexpressible amount to Marci, Brian, and Jordan, and will bolster them through the recovery period ahead.
We'll let you know when Marci is able to receive visitors or phone calls. In the meanwhile, please don’t hesitate to call or email if you have questions.
Best,
andrea"
I also sent Andrea an email with all of your comments and well-wishes pasted in, and here's what she wrote back:
"Hi Debbi,
What an amazing group of people--they've certainly brought a great big smile to *my* face!! I'm printing these out (in great big print, so as not to tax her eyes) so she can read them over and over while in the hospital.
Thanks so much,
andrea"
It's a good day...
Debbi
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Breaking news!!!!! ;D ;D ;D ;D ;D
Just got this from Marci, from her hospital room....
"Dear Debbie and everyone,
I can't quite see well enough to type so Brian is typing this for me. I'm finally in a room (out of the ICR), which is a great relief after spending overnight in the ICU. The caregivers here are outstanding. Tell Steve that I appreciate his comments about wild applause, but in this case it's the surgeons who deserve the kudos. Other than feeling weak, dizzy, and sore, I'm pretty damned happy to be alive. Thanks for your prayers and wishes.
Marci"
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debbi,
response back to Marci from me:
"ENJOY THE DRUGS! Get some rest! Milk all the attention! Feel better!!!!! xoxoxo Phyl"
(ok, nuff said!) :)
Phyl
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Jan, I think it just means the tumor grew off of the trigeminal nerve instead of the vestibular nerve (where a classic AN starts). I hope it doesn't mean trigeminal nerve issues; it sounds like they got it out cleanly, which is great.
Thanks for the explanation, Steve.
Question - may be a dumb one, but I'm not sure :P - does this mean that Marci's hearing isn't an issue? I know it was a big concern and I'm assuming she can still hear; am I correct?
Also wanted to address Andrea's comment about Marci being "in pain, of course".
This is the 2nd time today that I've read mention of pain post op and I can't stress enough (because I don't want newbies to freak out) that pain isn't a given. Some patients have pain post op, some don't. I had more pain in my neck from the position I was in during my surgery and the way I had to sleep post op due to the mastoid bandage than I had from the actual surgery. In addition, this neck pain didn't lead me to pain drugs. I know everyone's AN journey is different, but I'm sure there are other forumites who experienced this same thing.
So I just want to say it loud and clear - surgical pain doesn't always exist.
Jan
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I agree with Jan's previous posting about pain. I can honestly say that the only true, tears-to-my-eyes pain I felt during my entire hospitalization was the removal of the adhesive tape around the large IV tube on the inside of my right elbow. That was pretty excruiating, but when the nurse finally pulled the last piece of tape off the pain ended. I had dreaded the thought of a catheter -- people had told me the removal would be pretty bad, but I thought it was a non-event. During the recovery period I've certainly been aware of my scalp numbness and the tenderness around my ear as the nerves in those areas began doing whatever it is they do post-surgery, but I think it's more of an issue of sensitivity rather than bona fide PAIN.
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Yes, I think this is very much of an individual thing. I had a pretty significant amount of pain immediately following surgery, but the nurses and docs were very good about managing it. In fact, I still have days where I have a lot of pain in my neck and the AN side of my head. It is what it is. That's why I have Tylenol, Advil and, for the really bad days, something stronger.
I think everyone is probably a little diferent. Also, some of us are bigger wimps (me!) than others! ;D You'd think, though, that if the darned face is all numb, you'd get a buy on the pain elsewhere! HA.
Debbi, cheering Marci on!
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Hi Marci -
I was so glad to hear your fantastic news! I'm so glad you're doing so well. Brian and Andrea sound really great and it's good to know you have such wonderful support at home too. Sending lots of healing thoughts your way. Let yourself be pampered and take your time getting back to normal.
Wendy!
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I'm so glad to hear how well your surgery went, Marci--how wonderful that all of the tumor was removed and that there was no "collateral damage" to the nerves! I hope your healing will be quick as can be...
Carrie
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It's a good day...
Yes, it is. :)
Steve
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HI All - I am off to see Dr. Roland today, so won't be updating this thread until later this afternoon, when I get back from the City.
Sending three cheers and lots of hugs and prayers to Marci (and to Wendy, who is next "on deck"!)
Debbi, over and out
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Cheers Marci!!!!!! I'm glad all went very well......
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Debbi. You were asking about B vitamins. I have had tingling occ at places all over the body since my April surgery and it seemed a little worse after my surgeon follow up. I forgot to mention to him but did tell my family dr and he said to take Centrum silver. I think it has helped but still occ notice some. I just looked and it is over 100% for some B's and 417% for B-12.
I wasn't surprised that this could occur to me since have had the surgery on both sides. I will make sure to mention it to my surgeon. My family doc didn't seem too shook over it.
Cheryl R
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Hi All-
I fully expect Marci to be getting online herself today or tomorrow, but wanted to send you all the latest update from her wonderfully hubby, Brian. Got the following this morning:
"Marci says she had a dream that Steve was wildly applauding her in the recovery room. She's doing great: pain is better; she's walking around several times a day, with a walker; she's eating solid food; she had a good night sleep last night (5 hours, uninterrupted); she just had her first cup of coffee. She still has some numbness and tingling on the right-hand side of the face, and can't taste food there yet, but otherwise she's great. She's weak, naturally, and impatient to get home. They're giving her decadron for swelling and percoset for pain; the decadron is raising her blood sugar a bit, but her body seems to be adjusting, as the numbers have decreased from 185 to 149 to 134 most recently. (The first two required a bit of insulin, which as you know is normal.) She's napping/dozing a bit right now, but hopes to post to the group later. In the meantime, she wanted me to convey her THANKS to everyone."
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Marci:
Congratulations on your wonderfully successful surgery and the good news of your recovery - as shared by Brian, Andrea and Debbi, your intrepid courier. This kind of good news is exhilarating and certainly encouraging to all newbies and even us old-timers. Well done!
I didn't experience much post-op pain, except for a too-tight head bandage, which annoyed me no end until the doctor cut it off on my third day out of surgery. Other than that, I never had much pain and what I did was easily handled with OTC medications, such as Ibuprofen or just plain aspirin. However, because every AN patient responds differently to surgery, my case may not be the norm. Many posters have commented on their post-op pain, so it isn't an anomaly. One hopes it will subside quickly, to make Marci's recovery easier, matching her success with the surgery.
Jim
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It is so encouraging to hear of Marci's progress. Keep taking care of yourself and healing your body!
All the best,
Kathleen
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NEWS RELEASE!!!
Just got the following email from Andrea! I think Marci just set a new land-speed record - WAHOO!
"Hello everyone,
Marci continues to amaze us with her recovery: she is on her way
home. She apparently pushed herself to walk as much as possible today
and given that she continues to exceed expectations, they have
released her to continue her progress at home.
Will keep you posted,
andrea"
I believe my work here is just about done...
Debbi, grining from nose to ear ;D
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Way to go girl!!! ;D
Nothing like home sweet home, your bed and most of all a comfy pillow. Marci you are AMAZING!!!!! Can't wait to read your posts. Get a good nights sleep, a nice cup of coffee and hopeful if you are up to it a quick hi on the forum.
Anne Marie
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Marci -
going home already!!! Incredible news! You'll be back here posting before long, I'll bet.
Hey, Steve -
I don't recall you being at my surgery and applauding ??? You're not playing favorites, are you? ;D
Think I'll contact the ANA and suggest that attending surgeries in order to applaud would be a great addition to the moderators' job description :D
Jan
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Hey Marci and Anne Marie
Both of you have done great this week and I do believe you have served as inspirations to Wendy and Kathleen.
Way to go!!!!!
David
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Hey Jan
What do you think that applauding job pays?
David
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Hi all,
Thanks for love and support. I am on heavy drugs so will probably post tomorrow when I am more lucid. At least I'm home now. Is two days a record?
Mraci
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Yeah hooo!!!! Welcome back home ;D
Anne Marie
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Wow! Congrats! Home already! Speedy recovery from here out!
Brian
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Hey Jan
What do you think that applauding job pays?
David
Not a whole hell of a lot, David :D Probably won't even be enough to put fuel in the moderators' private jet. Oh yea, that's right, they don't have one ;)
Marci -
We've had a few posties return home incredibly fast, but 2 days might just be a new record!
Whether or not it is, we're all glad to "see" you back! Sounds like things are going amazingly well for you. I think I asked this earlier, but no one answered. Am I understanding right that your hearing was saved? Certainly hope so; I know it was a big concern of yours.
Get some rest!!!
Jan
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Hey Marci, I think 2 days is the shortest that anyone usually gets to go home. I think a real record would be 1 day. My surgery was completed at 2:30pm on a Monday and my husband was driving me home exactly 48 hours at 2:30pm on Wednesday. We may have to break it down to hours to know the real record. Be forewarned that I can be very competitive. ;) ;D
I'm just glad you are home because you now will be able to rest. Hey don't forget to post pics. We love to see head incisions and belly incisions. :)
Julie
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Very glad you're home and I pray your pain levels continue to drop with each passing day. Until then I do hope your meds are taking most of the pain away! There's no place like home! May you have continued healing and are on the fast track to welllness!
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Hi all,
No hearing loss yet and no facial nerve damage. My biggest complaint is that my neck is terribly stiff and it seems to be worse at night. Could not find a comfortable position but Brian is taking good care of me. The right side of my face is still so numb we'll just have to wait see. I pretty happy with the pain meds but it's taking a long to write email. I tried writing one last night to all of you but it took me so long my session is timed out. :D
I do have to agree that waiting is the worst part so I 'm relieved it's over. Could not have asked for a better team of surgeons.
Until later...
Marci
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*runs in... gives Marci BIG HEALING HUGGLE!!!!!!!!!!!!!!!!........ runs back out!*
Phyl
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Marci
I am so happy for you! It sounds like you have done beautifully and are on the road to recovery. It encourages me to hear that the worst part is the waiting, which is where I am right now. Five days and counting til surgery. You have been an inspiration to me and a calming influence.
All the best in your continued good health.
Kathleen
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Hey Marci-
I am SOOOOO happy you are home! Yes, you and Julie have definitely set a new land-speed record for getting out of the hopspital after brain surgery. I think as long as you can walk and eat, you are better off healing at home ... just one woman's humble opinion.
One thing I didn't ask Brian was how long your surgry was?
The stiff neck ... yes, that's a big one. You might want to try a hot compress. I actaully have a microwavable cloth covered compress that gives off wonderful moist heat. I am still using it and it works great for temporary relief. Massage also helps. And time...
Again, Marci, so glad you are back with us again. Take good care of yourself. Wendy is probably heading into the OR as we speak...
Debbi
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Hi Debbi
We think surgery was about 4 and a half hours long. Which I understand to be pretty short given the procedure. And for those who wanted to know, they a did a retrosigmoid procedure. I have a zipper-like incision.
Hey, any one have suggestions for getting comfortable at night? Trying to sleep last night, I just kept waking with neck spasms. It was
Thanks for all,
Marci
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Welcome Home Marci! I'm so happy to that things went so well. Definitely try some heat on that neck, the heating pad will do wonders. Or have Brian go buy one of those heat wraps you stick on. Try some different pillow configurations too. And you can ask Dr M for an OT referral, they do awesome massage. That was the best part of my recovery, OT massage. :)
Rest.......you are on the easy side of the AN surgery now.........
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I had neck pain for a good 2 weeks after my last surgery. I slept in 2 different beds and even sat up in a chair every night. I bought like 2 different pillows during that time and had more laying around. My head and incision didn't hurt. Just the darn neck. I did use heat on it some too.
It finally went away.
Good to hear how well your surgery went. I have a friend in Bay Village and visited her last summer,but I am from Iowa.
Cheryl R
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Welcome back home.
I had to change pillows so I could get comfortable. My regular pillow is one of those memory foam, very expensive and very heavy things and since Tues I've been using a cheap $5.00 fibre filled pillow. It has made a difference.
Rest my friend, enjoy your family.
Anne Marie
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Good suggestions on the pillows. Anne Marie, I still can't sleep on my expensive, memory foam pillow at night (rats!). I've found that equally expensive down (not feather) pillow works best for me. My incision is numb, but my neck still gives me trouble.
Heat, massage, a good pillow...and time...
Debbi
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Hi, Marci:
Thanks for the updates, they're very encouraging.
Your four-hour surgery and two-day hospitalization certainly put you in the Top 5 for shortest surgery/hospitalization. That you have no hearing loss or facial nerve damage is fantastic. I'm so glad for you! I pray your recovery will continue to be as rapid and successful as your surgery. :)
Jim
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Hey all,
Went to the doctor's--they took out the stitches and gave me the green light to do whatever whenever I feel up to it. One interesting fact--I asked about the "whooshing" sound inside my head and the nurse said it was probably CS fluid sloshing around. I thought that was pretty cool. All this time I thought it was the voices inside my head speaking as one. Who knew? I am pretty tired from the trip so I think a nap is in order.
M
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Sounds good - not the whooshing, the recovery. :) The whooshing could be tinnitus, too. Time will tell. You sound like you have made a fast recovery. Do take it easy for a while, your body may not be up to "whatever whenever" right away.
Steve
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Marci--Wow! Your recovery is amazing. A nap is well-deserved.
Debbi- For the first six months or so I remember my head being tender and not being able to lay on my surgery side. That did go away for me. I hope it does for you too so you can get back to your preferable pillows:-)
Kate
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Steve,
I'm pretty sure the whooshing is a type of tinnitus. It has stayed with me and it gets worse when I'm tired and so forth. My hearing is a bit wonky, but I have a follow-up with the neurotologist and will see. They did an audiogram before surgery so I imagine they will do another to compare them. Now if I could just stop biting my lower lip! I can't feel it but I keep on doing it. Only becomes a problem when the blood starts running down my chin, which I can't feel either. It has been entertaining for visitors, however!
M
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Hi Marci-
Yes, isn't that lower lip biting thing fun?? :P I made the mistake of buying a sandwich when I was out running errands today - I ended up with a lower lip, lettuce and tomatoe sandwhich. I don't recommend it.
Debbi
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Way to go, Marci. Like Jim said -- you're one of the record-setters here.
And Debbi, I do well remember those lip, tomato and lettuce sandwiches. It does get better -- although I still chew into my tongue. From what I recall, eating and my eye were the biggest frustrations I had for the first 4 months. And it is funny that you mention the sleeping thing. Only recently have I started sleeping on my AN side. Of course it could have something to do with turning my deaf ear toward my noisey neighbors. A convenience of SSD.
David
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Funny about the sleeping thing - I actually find it very comforting to sleep on my "good" ear and tune the world out. I find that I am sleeping more soundly now than ever before and I think it is becaue I can't hear much of anything. I was talking to someone the other day about this and she described it very well as feeling like she was in a cocoon!
And, yes, I'll be glad to see the end of the lip sandwiches one of these days... ;)
Debbi
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All,
Followed up with my doctor Tuesday and all is well. He won't check my hearing for three months but otherwise is hopeful that some if not most of things I'm experiencing with the right ear and facial numbness will resolve. They are very pleased with my recovery (reminded me that the tumor was huge and that had it grown it would have caused serious problems) and encouraged me to be patient. I have to give it up to a year to see what is permanent but I can start running again in another week. That made me extremely happy. (Though right now I can't even imagine running.)
I posted this on my recovery thread but thought I'd put it here as well.
I went out again today for more errands (also walked 2 miles) and think I have found my current limit. Extreme fatigue has set in so my husband tells me I'm grounded tomorrow--no running errands, no visitors, a day of rest and reading. Yes, Jim, you were right, I was pushing too hard. Tomorrow I will take it easy and then try to be more attuned to what I can and can't do yet. I blame this all on being a "baby boomer". It's not my fault, it's generational.
(Writing 100 times, I will be patient, I will, I really will.)
Marci
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Great news Marci!
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Hi Marci,
I think you will wn the prize for most amazing recovery!! I know you wore yourself out, but you walked 2 miles, WOW! I walk 5 or 6 blocks and am proud of myself. You are amazing! Try noit to push too hard though or your body will push back as it has. As everyone says patience is the key and I know this is easier said than done, sometimes I'm none too patient myself.
Wendy
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Hi Wendy,
Thanks. I hope your backaches are improving. It seemed that was the only thing really holding you back.
Have you or anyone else had issues with sleeping? I go to sleep on my non-AN side but by morning I'm in pain and on my AN side, but the pain is on the other side. Does this make sense? Once I right myself the pain goes away but of course by then I'm awake and it's too early.
Marci
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Hi Marci,
I have had the same experience but not every night. It takes forever to get back to sleep when it happens even though the pain is gone --it seems to wake me up just enough to make going back to sleep, or getting into a peaceful sleep difficult. LIke everything else, I guess this will improve with time.
Wishing you a peaceful night's sleep,
Wendy