ANA Discussion Forum
AN Community => AN Community => Topic started by: Syl on June 15, 2008, 02:59:31 pm
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Hi, all.
Tomorrow's my big day.. I had originally decided on translab, but changed my mind about a week ago. I will now be having the retrosig procedure. My niece, Jessika, is my scribe.
Thanks all for your support, prayers, well wishes, and good vibes.
I will tune in as soon as I can.
Syl
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Good luck tomorrow, Syl! The surgery will go just fine and you will be in postie-land before you know it! Stay calm and have faith..
We will anxiously await word on your surgery!
Brian
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Syl-
Many good thoughts, prayers, and good "ju-ju" coming your way. Looking forward to hearing from from your niece - and bless her for being your scribe!
Debbi
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Good Luck tomorrow ... will be keeping you in my thoughts
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Good luck, Syl. Know you're glad the time has come so you can start your recovery. We'll all be thinking of you tomorrow.
Cindy
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Syl -
I'm glad to see that you have a scribe. Thank Jessika for agreeing to update us.
Good luck tomorrow. I'm confident everything will go well for you.
See you on the postie side ;)
Jan
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Good luck Syl's on tomorrows surgery
eve
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Has anyone gotten an update on Syl? Her surgery was supposed to be yesterday. I'm anxious to hear something. *taps foot in anxiousness*
Brian
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I was wondering to... ???
K
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Me, three ;)
I was looking for a post last night, but figured it was too early for one.
Hope Jessika updates us today!
Jan
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Me, four. Hope all is going well with Syl.
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Hey Jessika
What's going on with Syl? We're like a anxious family nervously pacing the cyber-hospital floors.
Please let us know!
David
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Hi!
I/ve been wondering what's happening with Syl too. I checked here once before but didn't leave a message. Hope we hear something about her soon.
Wendy
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Maybe Syl should have threatened to torture Jessika like Tamara threatened to torture Don :o
LOL - only kidding, folks! :D
I'm getting more anxious as the days go by, but I'm sure Jessika will tune in soon.
Jan
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Sorry, I wasnt getting my confirmation email for the site. I wrote my response in the other forum syl has as well. But basically sylvia's doing really well. Surgery couldnt have gone any better. The tumor didnt cause any trouble in surgery and wasnt "sticky" (is what im told but you guys understand this better then i do) She just got out of the ICU as of last night or today (im not to sure). Im told her hearing was saved and her facial nerves are fine. I saw her the other day and except for a bit of swelling she was in high spirits and reminded me to write you guys (i apologize for my lateness again). She might be home on Saturday depending on how shes doing but because she is recovering well, i find it very plausable.
She says thanks for the the prayers and well wishes
i'll be happy to answer any questions,
Jessika
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Jessica thanks for the update. Very happy for the great outcome with her surgery. Give her my best letting her know how relieved I am and how great her news is regarding her hearing and facial nerve. Slow steady days ahead for her and I look forward to when she will post herself.
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Thanks, Jessika. Tell Syl she gets an A+ for doing so well. ;)
Steve
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thanks for the update, Jessika, and how wonderful to hear that surgery went well and Syl's hearing and facial nerve are OK! That's just fabulous!
Please pass on my good wishes to her for a speedy recovery--hope every day finds her stronger and more back to herself...
Carrie
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Jessika -
thanks for showing up; I had faith you would.
Wonderful news about Syl - no facial nerve issues and hearing, as well ;D
Do you know, did Syl have the translab surgical approach like she planned to have? Just wondering since we have been somewhat debating the chances of keeping hearing intact with translab. If you don't know the answer, don't worry; I can ask Syl when she returns.
Please give our best to Syl and tell her we are anxious to hear from her personally - when she feels up to it, of course ;)
Once again, thanks for the update - we tend to worry about our fellow forumites and like to keep track of how they're doing.
Jan
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Great news about Syl. Thanks, Jessika, for letting us know that all went well - and it sounds as though it did go very well!
Cindy
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Jessika:
Thanks for the very positive update on Syl. I'm gratified to learn she had such a successful surgery with no complications, facial and hearing nerves preserved. Wow! This is fantastic. Tell Syl we'll be thrilled to have her back as a 'postie' as soon as she's up to it.
Jim
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Hi, all
Wow! What an experience that was. Hope to never repeat that one.
All seems to be going in a forward direction. The dr said the outcome could not have been any better. My face is just fine. My hearing nerve was preserved, though I don;t hear too much from that side. Doc says give it time. After all the nerve was stretched and needs to heal. No promises though.
Food stays down, and I feel my appetite slowly improving. The dizziness is really bad, but each day cmes with some improvement. I am slowly gaining stability on my feet and have been using a walker.
On day 3, the PT had me sit up in a chair. That was really tough.
My doc explained to me something about a head frame with prongs, but I didn't pay muchnotice to it until I realized that my headaches are coming from where the from the scab on the lump on my forehead. Can someone explaing the frame thing to me?
Jan:
I had originally planned on translab, but changed my mind and went with retrosig.
I'm worn out for now. will tune in later. It's good to be back.
syl
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Hi, Syl...and welcome back!
Congratulations on your successful surgery and the very favorable outcome.
I had the retrosigmoid approach surgery and didn't have any head frame, which is usually associated with Gamma Knife treatment, or at least, I thought so. That is a mystery to me. I'm sure another, more informed member, will explain it.
Thanks so much for sharing your good news with us. Now, get some rest. :)
Jim
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Good to hear from you Syl!! Continued good healing coming your way. Remember, it is OK to have a bad day now & then - let them come however they come... ;)
K
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So good to hear how well things went, Syl!! Wow, that's so great that your face is fine and hearing seems intact - sounds like you had a great surgeon.
Hope your healing continues each day and the dizziness subsides soon - take care - thanks for giving us your update,
Cindy
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I had retrosigmoid and the head frame too. My neurosurgeon explained it was attached to my skull in three places then attached to the table to insure no movement throughout the "ordeal"! Hope this helps. Your headaches might be coming from nerves being compromised in the placement of the screws or perhaps some other mysterious place the doctors don't know about.
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Syl -
it's wonderful to see you posting again! Congratulations, postie! It sounds like you are doing great - keep up the good work ;)
I'm ecstatic about your hearing! I hoped to keep mine by choosing retrosigmoid, but it wasn't to be. I'm so glad it worked out for you ;D
As for the head frame, I don't believe I had it - at least my docs didn't mention it and I didn't make note of it in my operative report. It is my understanding that they just propped my head into "position" with something comparable to pillows (I'm sure there is a more scientific word for "pillows" but I can't recall what that is).
Please give Jessika our thanks for doing a wonderful job of updating us while you were away.
Jan
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Hi Syl,
Nice to see you back. Congratulations on a great surgery result. Maybe the head frame helped save your hearing nerve, in which case it was worth it. Hearing is always sensitive in any treatment, only time will tell. You sound good for being 5 days postie, just sleep a lot and things will pickup in a week or two. Take care!
Steve
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Syl - Great to see you back to posting. I had retrosig and the head frame also. It was attached in one place on the front (forehead) and two places on the back. I actually have a couple of black spots in the back where it was attached. They're small enough that with longer hair they wouldn't be noticeable at all. The place on my forehead was never sore, but I had a scab there for awhile (NOTHING like the new hole in my head and scar!). I never was told by anyone that I had a frame during surgery or what it was for, but I assume it was for keeping my head still during surgery.
It's really great to have ya back posting again and the positive report! Each day brings healing...
Brian
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Syl:
I don't mean to hijack your thread but this headframe thing with the retro surgery is interesting. My surgeon never mentioned a headframe and I never noticed any marks on my head or experienced headaches post-op so I doubt that I had one but I'll ask my neurosurgeon when I see him for my semi-annual MRI/consultation on June 30th.
Again, congratulations on your surgery and splendid outcome. I hope your recovery is rapid and complete. :)
Jim
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Syl,
I'm so glad you are a postie now!! Doesn't it feel good to have it over with?
Sounds like you did great. Tell Jessika thanks for keeping us updated. She did a great job!
That is great news that your facial muscles are fine, and also your hearing.
Our prayers were answered.
Sounds like you made the right decision at the last minute on the kind of surgery to have.
You are sounding good for only being 5 days out!
My surgery is in 5 days! I hope I do as good as you did.
Congratulations!!!!!
Lacey
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Pooter had a frame and is SSD. Syl had a frame and isn't.
Jim and I didn't have frames and we both are SSD.
So, it sounds to me like a head frame during retrosigmoid surgery doesn't really have any bearing on whether or not your hearing is saved.
Jan
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Syl -
Great to see you back! I was glad to hear yoru surgery went so well and that they were able to preserve your hearing too. That is truly great news!!!! Hope your recovery continues to go smoothly,
Wendy
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Jan - It doesn't make a difference on SSD or not, but it sounds like some doctors like the added comfort that there won't be any sudden movement during the surgery. It sounds like some like it and some don't.
Brian
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Gotcha Brian :) I didn't think it made a difference, but I was a little confused by Steve's post. Use of a head frame definitely sounds like a "surgeon's preference" thing.
But now you've got me wondering ??? just how common is sudden movement by a patient who is under general anesthesia ??? I can see it being a concern during conscious sedation, but with general anesthesia the patient should be totally "under". Guess I'll have to ask some of the folks I work with since they administer anesthesia for a living.
Jan
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Syl-
So GLAD you are back - and that your surgery produced such a great outcome!! i now you were worried about the facial nerve (I think it's a big concern to most of us) and how wonderful that the surgeons managed not to irritate it!! Also wonderful news that you seem to have preserved hearing! Guess the dizziness will pass in time, hopefully quickly. Meanwhile, I'm impressed that you are already online and posting.
Continuing to send you healing thoughts and all good things...
Debbi - thrilled for you!
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Hi, sylvia, how are you doing? just got back from reno & can't find your cell. I will call mary & get it. shirley
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Hello fellow forumites,
I'm 10 days post-op and went on my first outing to see the dr and get my staples removed since I got home from the hospital. Though I left my walker at home, I'm still walking like a drunk, but walking, nontheless, with a little help.
Haven't been able to sleep straight through the night since my surgery and haven't been able to take as many naps as I know I should be getting. Part of the reason is that I just can't get my head in a comfortable position to rest. The AN side of my head hurts or feels pressure and wakes me up.
I'll go try taking a nap now.
Til next time
Syl
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Welcome to Postie-land, Syl! I'm glad to see ya up and about. Walking like a drunk and everthing else will pass in time. Nice to have ya back here!
Brian
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Syl -
as Brian said, things will get better in time. Your recovery sounds like it's right on target.
My surgery was a little over a year ago, and I still am unable to get comfortable enough to sleep at times.
Your walking should improve over time. Ten days post op isn't that long; have patience ;)
Jan
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Hello my dear fellow forumites,
Today I began working on the balance exercises Dr. Kato gave me. They're not easy, but after doing some of them, which included walking up and down stairs, I was able to walk up and down stairs on my own with confidence, though still feeling like a drunk.
I've been eager to step outside and get some fresh air and exercise, but the air quality has been rated as unhealthy for everyone due to so many fires all over Northern California. So I have opted to postpone unnecessary outings until the air clears up--it could be a while.
Happy to be in postieland
Syl
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May your healing continue on a forward path and sounds as if you are on your way to a more "balanced" life--wonderful news! I remember the exercises well and even though they weren't fun on the first or second try, they did get better. I continue with them about three times a week, takes about 20 minutes from start to finish. Remember to rest afterwards to bring the head and neck muscles back to a relaxed state keeping the tension-type pain to a minimum. You are progressing better than I did post surgery being able to read and type on this forum.
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Hi Syl-
Glad to hear you are moving about - that definitely helps. I have to laugh sometimes now when I go up and down the stairs - when I think back to my first week or two at home when I had to clutch both railings, not look down, stop on each step... I don't even use the railings most of the time now.
Don't know what kind of pillows you have, but I found that goose down has been the only thing I can really sleep on. It is very soft against the side of my head where the incision is, so it doesn't really create any pressure. I have a foam contour pillow, but can't use it all because it is just too uncomfortabel on the incision. You may want to try down and see if it feels any better. Also, if you are still on steroids, they do make it hard to sleep.
Keep taking taps whenever you can.
Debbi
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Syl,
Glad to hear you are doing so well in your recovery. I have to agree with Debbi about steroids having been on two prednisone tapers, it did makek sleeping for any length of time difficult. If you are still taking them, I'm sure this will improve when they are discontinued. I hope you continue ot have an otherwise fantastic and speedy recovery. I'm sendiing healing thoughts your way!
Wendy
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Steroids? I forgot all about the steriods. What exactly are those for? All I've been taking was the rx pain meds, which I stopped taking after day 2 in the hospital, and stool softener, which I also took briefly. For pain I use OTC Tylenol once or twice a day. I don't think I ever got steroids.
Syl
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Hi, Syl:
To the best of my knowledge, steroids are used to reduce swelling, important after AN surgery. I had a post-hospital 5-day regimen and didn't have any sleeping issues, but then, my wife says I could fall asleep in the middle of a hurricane, so I guess I'm not the best source of information on steroid side effects. Pain meds are another story and are usually prescribed as needed. If Tylenol handles whatever pain you may encounter, you're good. The stool softener is always a good idea, for obvious reasons. It seems as if you're coming along nicely, Syl. Don't try to rush things but do keep progressing at whatever pace is good for you.
Jim
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Syl, You may have been given them thru the IV for so many doses. I think it was a dose every 6 hours and now can't remember how many doses total. You would not need to get tapered off them if it was not a large number of doses. I only ended up having to take some orally after I got home this last surgery this spring as I had an unusual post op the first 3 days after surgery.
Cheryl R
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Syl -
the only steroids I got post op were given to me when I woke up after surgery. After the neurosurgeon and the neurotologist had me run through the "facial exercises" - you know, smile really big, wrinkle your forehead, etc. - they decided I had a slight facial nerve issue, so I was given a dose of steroids. I can't recall if it was an oral dose or something they put into my IV, but that was the one and only time I had steroids post op.
You may or may not have had steroids.
Jan
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Hello fellow forumites,
Suddenly, 17 days post-op, the assymmetry shows up. This morning as I brushed my teeth, water spilled out of my AN side. Then I noticed my smile is not as wide on that side. Did this happen to any of you? My face appeared to be very symmetrical and unaffedted by the surgery until today.
Otherwise, my progress is in a forward direction. My balance is improving, though I still haven't mastered the skill of staning on one foot with my eyes closed. And, I'm not ready to drive just yet.
This face thing has me very concerned.
Syl
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Hi Syl
I don't have an answer for that but I did have a similar experience. And the discussion on steroids may be the clue. When I was in the hospital loaded up on steroids, I was up walking within 2 days and only had a slight issue with palsy. I came home with a week or so supply of steroids and the expectation I would be 100% in a month or two. It could have been about the time I stopped taking the steroids that my balance worsened and my palsy became more pronounced -- I don't recall. But here on my 7 month anniversary, my balance is still horrible (even with vestibular training) and I developed synkinesis. Now I'm wondering if steroids may be the key to a complete recovery.
Any thoughts from those who are more medically versed?
David
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Hi, Friends
Is it possible that a nice hot shower could have somehow affected the inflamation of my facial nerve causing the facial weakness on the AN side? I noticed it right after I took a hot shower yesterday. As the day progressed, my smile got more symmetrical. The asymmetry is present, but I can wink much better with that eye today.
Syl
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Hi, everyone
I'm 21 days post-op and will be going to my own home today. I've been staying with my sister and her family since I was released from the hospital. They've been wonderful caretakers and I will finally give them a break.
I continue to wake up with headaches on the AN side. I wake up once in the middle of the night with a headache and then again in the morning with a headache. If I take an afternoon siesta, the headache greets me when I wake up. OTC Tylenol is what helps take care of the headaches.
Looking forward to some PT for my equilibrium, but that doesn't start for another week.
Syl
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Hi, Syl:
I'm sure you're happy to be going home. The headaches must be frustrating but if OTC Tylenol handles them, that's a good sign that they're probably transitory. I hope so, anyway. I'm sure your doctor might have better information.
Thanks for the update. Now, don't overdo it. Just take it 'One Day At a Time'. :)
Jim
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Where exactly are the headaches? Maybe it's a positional sort of thing. For other reasons (leaky head), I've been sleeping on a gradually increasing pile of pillows so that my head is elevated. Maybe try some different pillow and head positions...just a thought....
Tammy
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Tammy,
The headaches seem to start at the neck and radiate on the AN side, shooting all the way to the temple with a throbbing, sharp pain. I haven't been able to sleep straight thru the night because the pain wakes me up. I finally get back to sleep, but it's there when I wake up in the morning.
Syl
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Syl-
I am still having a fair amount of neck and head pain - sounds similar to what you are describing. I usually take either Advil or tylenol - occasionally a percoset if it really gets bad. My neurotologist also suggested warm compresses on my neck and the side of my head/temple - this has also helped quite a lot in terms of temporary relief.
I went to see a massage therapist a couple of weeks ago, and had her work on my neck and shoulder and that also really helped alot. She suggested some self-massage where you put your finger right at the joint of your jaw bone and gently massage. If you have a hard time finding the joint, open your mouth slightly and run your finger up along the front of your ear - you should be able to find the joint. Then just rub it in a small circular motion - very soothing.
Tammy had a good suggestion, too, about trying different sleeping positions. You can try combinations of pillows, or even get one of those foam "wedges" from Bed, Bath & Beyond.
Hope you get some relief, Syl.
Debbi
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Syl,
I'm sure going back to you own home will be a relief even though your sister was great to help you out. I don't have any advice about the headaches but hope the advice you've been given by Debbi and the others helps.
Wishing you pain-free nights,
Wendy
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Hello, everybody
I'm 4 wks post-op.
So I got my rx of prednisone for my facial asymmetry. It seems to be working. I can whistle again and I got my dimple back. My smile is ok, too. Every time I feel my eye and lip twitching, I get excited because it is always followed with increased animation on that side.
Due to the unhealthy air quality, I haven't dared go outside and walk until yesterday. Today I will attempt it some more, with a cane or a buddy of course. I'm still unsteady on my feet and not driving yet. Will start physical therapy for balance tomorrow.
Headaches are becoming less of an isssue. Maybe the prednisone has something to do with that, but I'm taking less Tylenol. The heating pad helps, too.
Debbie:
I made a trip to Bed, Bath & Beyond and found a u-neck micro-bead filled pillow which provides wonderful support. Thanks for suggesting I go there.
Syl
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Hey Syl,
So good to hear you can whistle! That is definitely a good sign, in my not so expert opinion. How is your equilibrium? Know you're headed to PT tomorrow, but just wondering how it seems now. Glad your headaches seem to be easing up as well.
Hope all the good things continue for you,
Cindy
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Hello, everybody
I'm 4 wks post-op.
So I got my rx of prednisone for my facial asymmetry. It seems to be working. I can whistle again and I got my dimple back. My smile is ok, too. Every time I feel my eye and lip twitching, I get excited because it is always followed with increased animation on that side.
Syl
I think most people who have a delay facial nerve issues,. always come back to normal !! so this is good news ... its just part of the healing process .... I know for me going to facial therapy always seemed to help .. at least temporary .. so I warm shower does not surprise me
you can whistle ! that's good !! .. I did not even think of this until weeks after my surgery I tried to whistle to get my dog in .....but nothing came out but air .. it was almost funny .. (yeah gota keep a sence of humor)
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Syl-
So glad you found somethign that worked at BB & B. And, I am THRILLED that you can whistle!! Yahoo! I still can't do that, so am feeling quite in awe. It sounds like you are doing very well - just remember to be patient!
Debbi, still not whistling in NJ...
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Hey Syl,
...How is your equilibrium? Know you're headed to PT tomorrow, but just wondering how it seems now....
Cindy
Went for a walk around the entire block tonight--maybe 15 minutes or so. We were going very slow, my walking buddy on one arm and my cane on the side. It's very difficult to turn my head to the sides and walk forward. Each time I did that I had to stop due to the dizziness and loss of balance. Still can't stand on one foot with eyes closed without immediately tipping to the side. I have a ways to go. Thanks for asking, Cindy.
Syl
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Syl - it sounds to me like you are doing very well - good for you for getting out and walking! It it is any consolation, I still can't really stand on my An foot (think Yoga Tree Pose) for more than about a second or two without tipping. And, if I close my eyes - forget it! I tried no-eyes on the Bosu ball the other day and fortunately, my husband was there to catch me! :D
I think you're doing great, Syl - just be patient!
Debbi
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Syl,
Glad to hear you are progressing well in your recovery. It sounds like except for your balance issues (which I am not discounting I can't stand on one foot for very long now, so I know how that feels) you are on the fast road to recovery! Great news!
Wendy
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Hi, all,
Prednisone side effects: among others are headache and dizziness. I got 2 more days to go with the steroids. Hope to see a reduction in headache and dizziness real soon.
I have a real good grasp of what "good days" and "bad days" means. I'm noticing more and more of the good ones with great improvement in my condition. One day I can do lots of stuff and feel ok, then for 2 days I feel so tired and only want to stay put.
Today was a very good day. I went for a walk by myself, then went out and about town, then went for a walk again. It's great being able to get out--now if I could only drive myself there.
Syl
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Patience, Syl, Patience. You'll be driving before you know it. For now, celebrate the walks and other milestones - you deserve it! I know what you mean about having good days and bad ones. Most of mine are good now, but if I do a lot one day, I'll pay for it the next day. I expect it though, so it isn't so much of a problem.
You're doing great!
Debbi
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Syl -
just wanted to echo what Debbi said. You are doing great and will be driving before you know it.
One day at a time,
Jan
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Syl, I agree with everyone else. I couldn't wait to drive again. If memory serves, your only a few weeks out. I didn't drive at all for almost 6 weeks or so after my surgery. It's only been recently that driving seems more "normal" for me and I am 2.5 months after my surgery. Patience is definitely in order for each of us. It will come with some time for ya. Don't rush it too much. There's a fine line between pushing too hard and not enough. Pushing too hard could hurt. Patience, patience, patience. You are doing better than anyone could expect. Take it easy while you can get away with it. ;)
Congrats on doing so well!
Brian
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Hi Syl,
From what I understand having good and bad days is the norm. It sounds like you're doing really well. I know you've heard it before but patience is key when recovering from any surgery, apparently even moreso with this one. One step at a time.
Wendy
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Syl--
So glad to hear about your wonderful facial reanimation milestone--you whistled AND have your dimple back! Whoo hoo!
Hope you're feeling much better now that you're done with the prednisone, and that the "good days" keep increasing in frequency for you...
Carrie
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Hello fellow forumites,
I've been off prednisone this week. I'm now getting more headaches and they stick around longer--not what I was hoping. The dizzines has been pretty bad. More bad days than good this week. I have been walking about a mile 2 times per day. Could I be overdoing it?
Syl
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Hi, Syl:
I'm sorry to learn of your bad days becoming more frequent but you may have something with relating them to walking. Even though a mile twice per day isn't a lot for some, it could be too much for you. If so, your body has less resources to facilitate healing and that could result in the bad days. Just speculation of course, I could be completely wrong. Rest more and see if that helps, as I pray that it will.
Jim
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Syl -
I like Jim's suggestion. Try to rest more and see if makes a difference.
Although you may not feel like you are overdoing it, your body may have a different opinion.
Jan
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Thanks Jim and Jan.
I'll shorten my walks and see how that goes.
Syl
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And, if the headaches continue, call your doctor, okay?
I hope you have a better weekend, Syl - you deserve it!
Debbi
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Good day to all,
Maybe it's wishfull thinking on my part, but I believe voice recognition in my AN ear is improving.
Since my surgery on June 16, my tinnitus has resembled the faint sound of a flourescent light that's about to die. Before that it came in the form of many different sounds, such as a moribund flourescent lamp, crickets singing away in the distance, a ping, ping, ping sound, among other sounds.
All of a sudden over the weekend, the fullness in the ear has diminished, and a new sound was introduced to my tinnitus. Every now and then I hear a beep, beep, beep. At first I thought the the tinnitus was probably getting worse, but now I'm hoping that it's because my hearing is improving. I've tested this theory by plugging up my good ear just to confirm my suspicion and I honestly think there has been some improvement.
I'll keep you posted.
Syl
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Hi Syl,
I understand the temptation to get moving, I am guilty of it myself and have to remember not to overdo. I am an over achiever though....I have a whooshing sound coming from both ears--explained as CS fluid sloshing around. Headaches when I get really tired which I think is my body's way of saying stop. I hope your sleep has improved as you find more comfortable positions. You sound as if you are doing incredibly well and will be back to yourself in no time at all. Your story, and those of others have really inspired me as I make my own recovery. Wishing you headache free days and restful nights.
Marci
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Syl-
Exciting news! I'll keep my fingers crossed that the hearing continues to improve - I'm very happy for you!
Debbi
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Syl -
this is very exciting news! It would be totally awesome if your hearing was improving!
Hope you're correct!
Please keep us updated! YAHOO! ;D
Jan
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\I have a whooshing sound coming from both ears--explained as CS fluid sloshing around. Headaches when I get really tired which I think is my body's way of saying stop. Marci
Marci,
You mentioned a couple of things that at this point are most likely recuperation by products.
That being said, you mentioned CS fluid and getting headaches in your post. If your headaches persist, it warrants a call to the doctor. One of the symptoms of CFS leaks after surgery is a headache. I am not sounding an alarm, nor do I pretend to know your condition, it just raised a little flag when you mentioned both in the same post.
Kindest regards,
Kate
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Good day to all,
Maybe it's wishfull thinking on my part, but I believe voice recognition in my AN ear is improving.
Since my surgery on June 16, my tinnitus has resembled the faint sound of a flourescent light that's about to die. Before that it came in the form of many different sounds, such as a moribund flourescent lamp, crickets singing away in the distance, a ping, ping, ping sound, among other sounds.
All of a sudden over the weekend, the fullness in the ear has diminished, and a new sound was introduced to my tinnitus. Every now and then I hear a beep, beep, beep. At first I thought the the tinnitus was probably getting worse, but now I'm hoping that it's because my hearing is improving. I've tested this theory by plugging up my good ear just to confirm my suspicion and I honestly think there has been some improvement.
Syl
Syl,
It sure sounds like your hearing is improving and not just wishful thinking. I conducted the same kind of "informal tests"!!! I still do at times:-) My hearing improved within a short amount of time after my surgery. I have to look up my hearing test dates, but when I left House my hearing was a little less than it was after a short period of time... after the healing was complete.
I am keeping my fingers crossed for you.
Kate
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Thanks Kate, will keep an eye on it. Appreciate the word to the wise.
Marci
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Improved hearing is great news! My tinnitus got better / quieter post op too, although I have no hearing on my AN side. Continued healing in the right direction!
Brian
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IT'S TRUE, IT'S TRUE!!! My hearing has improved. Voice recognition is not quite where I was pre-surgery, but I have regained some of my directional hearing and can hear a bit in stereo.
Syl
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Woo Woo! Improved hearing is GREAT! Congrats!
Brian
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Way to go Syl! ;D
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Syl -
as much as I LOVE my BAHA (have I mentioned that? LOL) I envy you.
Nothing is like "real" hearing! You must be SO thrilled and excited.
Jan (thrilled and excited for you) ;D
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Syl~
How exciting!! We don't "hear" that good news too often - what a great thing for us all to get to celebrate!
K
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Syl,
Don't worrying if people catch you with one finger in your ear, as you tap on various surfaces with your head cocked sideways. Its perfectly normal. ;D
Great news on recovering your hearing. I'm hoping you word recognition recovers as well.
Steve
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A good day to all,
I am very excited about my improved hearing. I didn't have a hearing test after surgery, so it's hard to say how bad my hearing was then. I know I wasn't SSD and therefore not a candidate for the BAHA. And I am sure that there was very little word recognition, eleminating me as a candidate for a hearing aid. Dr. Kato told me that if there isn't any word recognition, a hearing aid only amplifies the distortion of sounds, making it useless. So now that I definitely have improved word recognition, I know that I am a candidate for a hearing aid. But I'll hold off on getting fitted for one, until after the internal healing is complete.
Glad I changed my mind about translab and chose retrosig instead. Not only was my hearing saved, but my face is back to normal after having a bit of a scare with facial palsy. LIFE IS GOOD!!!
Now, if I can just put my cane away, start driving, and eliminate the headaches, I'll be good to go. I know, I know...patience Sylvia, patience.
I'm gonna say that my patience was removed with my vestibular nerve and decomposed out in the middle of some landfill or is buried in some hospital part cemetery. I know I've asked this before, but didn't get an answer. Does anyone know how removed body parts are disposed of? Not only did I lose a vestibular nerve, but a piece of my skull went with it.
Syl
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Syl-
I can't say I ever thought about where my vestibular nerve ended up!! My skull, thankfully, was glued back together so I've still maintained possession of that!
Meanwhile, the heck with that - YAHOO for you and the hearing!!! I am thrilled for you!!! Please enjoy some stereophonic sounds for me, okay?
Debbi
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Syl;
Congratulations on the return of your hearing!
O.K., I know it's not 100%, but that is such an exciting development that it's worth celebrating. I'm sorry you continue to suffer with other post-op issues, but I hope and pray that they'll go the way of your initial hearing loss. If Retrosigmoid approach AN surgery is a gamble, you just won! :)
Jim
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HI Syl!!!
I am so excited for you that your hearing is improving!!! That is fantastic news and I am THRILLED for you!!!!! My hearing is now completely gone in my AN ear but i am still looking forward to the day I can have the BAHA surgery. I'm so glad it looks like your hearing is coming back. Like Jan said, there's nothing like the real thing! Ciongratulations!!
Wendy
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Syl;
Congratulations on the return of your hearing!
If Retrosigmoid approach AN surgery is a gamble, you just won! :)
Jim
I certainly do feel like a winner. Prayers, well wishes, and good vibes do work. Thank you so much to all for them.
Syl
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Hi Syl,
I don't know if you would wait this long after surgery, but after CK radiation, I waited 6 months for the hearing to stabilize, before getting a hearing aid. They are pretty adjustable, so it is okay if your hearing continues to change a little bit gradually, but it makes sense to wait long enough to see what your basic level is. I am pretty used to mine now, and it produces a pretty decent "new normal" level of hearing.
As far as I know, the bits and pieces left after a surgery (leftovers? ;D) are considered possible bio-hazards, so after the pathologists have checked them out, if they don't end up pickled in a jar for a med school class, they go up in smoke in an incinerator.
Steve
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Steve,
Dr. Kato had recommended I wait about a year after surgery before deciding on a hearing device. I didn't realize that hearing aids are adjustable. So waiting 6 months doesn't sound like a bad idea.
Thanks for the info on surgery leftovers. I can't see a med school class getting much use out of a small skull piece. But, then again maybe they do get some use out ot it.
Syl
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Syl,
I am very happy to hear your good news with your hearing! You certainly must be very excited to have even a little hearing in stereo. I hope you have continued healing with regards to your headaches and continued success with your balance--which by the way, I hope you have looked into vestibular rehab if you can. It really speeds things up.
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Arushi,
I will begin physical therapy for my balance next week. I'm looking forward to that in the hopes that it will speed things up.
Syl
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Syl,
I'm desperately trying to stay caught up with everyone's recent developments... and I saw your's... and have to give you a hearty congrats! FAB news! My congrats to you.... and continued wellness!
Phyl
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Syl, Wow! Congratulations.
As a hearing aid wearer, I guess it makes some sense to wait on getting one. They are programable to suit your hearing needs -- but I guess the difference would be in the investment you would want to make
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LA David,
How expensive are hearing aids?
Syl
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Syl,
My hearing aid was 2500, bought through an audiologist, which is more expensive than off the Internet, but you get more support with it. The range is probably 1000 - 3000, and probably 1500 minimum for a digital one. Not cheap, but if you wear one for five years, the annual cost is pretty reasonable. People pay more for their cell phone in that amount of time.
There are some different types (behind the ear, in the ear, open receiver, power receiver, etc.). The amount of boost you need dictates which kind is most suitable, and you want one that can be turned up further, in case your hearing level declines over time. That is probably the main reason to wait a little while first.
Steve
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Thanks, Steve
It appears that there are many options. It's good to know.
Syl
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Hi, everyone
Good news! I went to Marine World on Saturday with a group of people. I didn't get on any rides--just walked around alot with my cane handy, saw some of the shows, and took lots of sitting breaks. I was out there a total of about 9 hours. I was fine until the very end when it was time for our group to gather before we headed home. While some of us waited a dj played very loud music that gave me a headache. I happened to have earplugs handy, but I still haven't got the hang of inserting them in my ears. So I had to go wait away from the music.
The trip to the park was about 1 hr 20 mins. Up until then, any car ride felt like rollercoaster ride. Well, not anymore. That car ride was the smoothest since my surgery. So I decided that I could begin driving, and the following day I did just that. I'm happy to say that it's a great feeling getting back my independence and not having to rely on rides from others. For now, I'm only driving locally but it sure feels great.
I have more good news. On Sunday and today I was out and about town and I haven't been using my cane. I also went walking my usual pre-surgery route of 3 miles with my sister and without my cane. I feel good right now, but will not be surprised if tomorrow isn't such a good day.
Syl
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Syl -
lots of very good news! It sounds like your recovery is right on target.
Small steps lead to bigger steps - and the progress you're making is wonderful ;D
Thanks for sharing this with us,
Jan
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I feel good right now, but will not be surprised if tomorrow isn't such a good day.
Well, they say the optimist is sometimes disappointed, while the pessimist is sometimes pleasantly surprised. You are sounding like a seasoned ANer now. ;)
Actually, your news is very good. Both driving yourself around, and walking around without a cane, are significant developments. Enduring a 9 hour visit to Marine World is a feat in itself, even for a normal person. :)
Great to hear you are making such good progress.
Steve
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Hi Syl,
I just caught up with all your good news!
Congratulations on everything!
Nancy
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WHOO-HOO!!!
that's all I have to say about that...
K ;D
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Syl - That's great news! You are coming along great! Walking without your cane *and* driving yourself around! Great job! Before you know it, you'll be driving old men off the road like Jan! ;)
Brian
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Syl-
Thrilling news! So glad you are mobile again - it's a great feeling, isn't it?
Debbi
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Wow, Syl, you really have had a great few days! Sounds like wonderful progress! You are, of course, still intitled to nap times, lots of them!
Hope the good news continues,
Cindy
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Hi Syl,
I am just playing catch up on the forum again. My backaches are still plaguing me and keep me away for a day or two at a time. Great news about your trip to Marine World, driving and doing your 3 mile walk again. Did you start your vestibular rehab yet? I have my first appointment next Tuesday and am curious to see how yours went Maybe we can compare notes after my first session. I'm very hopeful this will help -- the TP seemed sure it would.
Wishing you all good things,
Wendy
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Wendy,
Had my 1st P/T appt. today. The therapist tested me with some exercises to see where I am with my balance. Then, we worked on my balance. I noticed improvement with each exercise I did. The first repetition for each revealed my vestibular deficiencies, but the final repetition showed noticeable improvement. After working with her for almost an hour, I left feeling dizzier than when I arrived for my appt. But that's how it is with vestibular exercises. She seems to think I'm doing really well, and come to think of it, so do I. It's amazing how fast my remaining vestibular nerve is kicking in. Sometimes I feel it's asleep at the wheel, but not today. I was sent home with some exercises for homework and will see here again in 2 wks. LIFE IS GOOD!!
Syl
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Woo woo! Congrats on your first appt! That's all really good news! A milestone for sure! Congrats!
Brian
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Yay Syl!!
It sounds like your first PT session was a complete success and I am ecstatically happy for you.! Hope the homewolrk your PT gave you helps things improve daily.
Wendy
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Hello friends,
Yikes!!!! I have one more full week before I'm due to make an appearance a work. I'm due back Tues, Aug. 19.
Two weeks ago, I was having doubts about being ready and was considering extending my med. leave. Since then I have noticed a great deal of improvement in my condition (dizziness, balance, headaches) so I will show up as scheduled. However, my plan is to work shorter days that 1st week.
Life is returning back to normal.
Syl
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Syl~
Glad you are going shorter days at first. I did 1/2 days the first week - I alternated mornings & afternoons. You might think about that, especially if there is a lot of traffic or something in your commute or getting ready seems to take more out of you than planned.
K
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Syl's checklist:
Facial Nerve :)
Hearing :)
Walking :)
Driving :)
Balance :)
Dizziness :)
Headaches :)
Yup, you should be ready!
Steve
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Thanks Steve,
When you put it in a list like that, my progress report is excellent.
Syl
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Since then I have noticed a great deal of improvement in my condition (dizziness, balance, headaches) so I will show up as scheduled. However, my plan is to work shorter days that 1st week.
Life is returning back to normal.
Syl
Syl,
Starting with shorter days the first week is a great idea.
I am doing a happy dance for you celebrating your improvement in your condition.
Kate
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Syl:
Just popping into your thread to add my good wishes for continued progress in your fairly rapid recovery. I pushed myself when recovering and on hindsight, that was probably imprudent but paid off in a faster time frame for getting back to normal. You seem to be doing all the right things and unlike me, not rushing it. Your continued success in moving forward is very heartening to everyone following your progress. Thanks for keeping us apprised and don't be concerned about returning to work. I think you'll be more than ready. :)
Jim
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Hi Syl,
Great news that you are feeling well enough to return to work woon and begin to return to a normal life again! Working shorter days the first week is a good idea too. It's probably best to push yourself, but not too hard. Just remember to listen to your body as it will tell you what you need.
Wendy
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Hi Syl,
I'm joining Kate in the happy dance for you. Yay!
M
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Good morning friends,
I went for almost 2 full days free of the nasty headaches. My head has felt like a headache wants to develop, but it doesn't. That is a major step forward in my healing process. This allows me to reduce my pain killer consumption. The headache that broke the 2-day streak went away without my having to apply any heat. However, it did require 400mg of Motrin.
I'm going for a walk before it gets too hot outside.
Syl
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Great to hear you've had some headache-free days! Know that's such a relief.
Hope you enjoyed your walk - we had an almost fall-like day here today.
Cindy
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Hi Syl,
Glad to hear your headaches are getting better. Another step forward and another small victory.
Wishing you continued victories on the road to wellness,
Wendy
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Two headache-free days feels like progress to me. I will join you on your walk, only virtually. I wonder what two dizzy AN'ers would look like walking together? :D
Marci
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And, I'll totter along with you both! I'm not dizzy, but my balance still sends me staggering around at times. Kind of funny, actually.
Debbi, looking like a drunken pirate...
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Hi Syl,
I just realized this is the week you were going to go in to work for a few hours a day. I hope everyone was REALLY nice to you and that it wasn't too tiring, but it sounded like you were ready for it.
Please let us know how you're doing when you get a chance, but of course, after you've taken a refreshing nap!
Nancy
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Nancy,
Thanks for inquiring. I did return to work 5 hrs per day. It's been exhausting, but I think getting back to my routine will do me some good. It will help me feel more like normal as the healing continues. I had enough of being couped up at home. If it gets too much to handle, I can ease up on the work schedule or just take a day off.
I got a very good reception, not only because they got some help back, but there's something comforting about seeing that I'm alive.
Now it's time to think about taking that vacation I've been putting off all year.
Syl
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Syl,
So glad you got a good reception! It's really good that you can ease up on your hours if you need to, but it sounds like you were really ready for this next phase.
I agree that you should definitely start thinking about that vacation! 8) Funny how these AN journeys make us re-evaluate the "important" things in life!
Wishing you continued healing!
Nancy
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Hi Syl,
I'm glad you're getting back to work and I'm sure they missed you and are thrilled to see you're doing well. I went in today for an hour, went to lunch with my boss and came home and went to sleep for over two hours!
I am a true party girl! You too?
Marci
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Hi Syl,
I'm glad you have discovered that they didn't change the locks at work while you were gone. ;)
You have been through a major medical event and very patient with your recovery; I think you are now entitled to a first class vacation anytime you want to go. 8)
Steve
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Steve,
About the locks...my FOB didn't work. And, I had to take a new photo for my badge, which is my FOB. Don't know how the photo got deleted from the system. Funny thing cause that's the photo that I had requested the obits clerk use if something should go terribly wrong with my surgery.
But, not to worry, everything is in order now.
Syl
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Syl--
So happy to read that you are back at work - that is definitely good for the psyche! Just remember to take it easy... ;)
Debbi
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Hi Syl,
Congratulations on successflly returningto work! Remember not to overdo it -- you may feel pretty good but you are still healing.
Best wishes,
Wendy
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Congratulations, Syl.
There's nothing like getting back to your normal routine post op - even if it's being able to return to work. Personally, I was never so glad to go to work in my life :D
As Wendy said, take it slow and don't overdo. When I first went back, napping was part of my routine when I returned home, but I was able to phase it out in time.
Be good to yourself and definitely take the vacation - soon!
Jan
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Hi Syl,
Sorry I brought up the door locks/FOB story. All I really meant was that you were welcomed back to work (even if they did lose your picture somewhere).
I remember it took me a while to get fully back into the swing of work; I was not as sharp or energetic for a while. But it was good to be back at it.
Take care,
Steve
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Steve,
No offense taken. I thought it was funny you mentioned that.
Syl