ANA Discussion Forum
Treatment Options => Microsurgical Options => Topic started by: kixit on June 24, 2012, 07:28:13 am
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It's hard to believe 4 weeks have passed since the "day". I've looked back on the mini-steps that I have taken since surgery. I can drive (it's hard at dusk), I am back at work (limited capacity @ 2 weeks post-op). I can laugh at myself (I did before) and put people at ease if they think they have said something to offend me (like the hearing).
It is what it is and I try to make the best of it--it's better to make the oddities fun than be pessimistic (sp?)
I also think about what I still have to overcome--balance is still a major issue! I do excercises but I am still way off kilter. The surgeon said it could take 2 months or 2 years to resolve. I can't be like this for 2 years, somethings got to give. I try not to push to hard but I want the balance thing to GO away >:D
I thought back when I first became deaf on the AN side. It took about a month for my right side to compensate the balance. It's been a month since surgery and no improvement post-surgical balance issues. I'm guessing because one vestibular nerve was destroyed (along with the auditory nerve) by the tumor and the intact, healthy vestibular nerve was severed because of the translab procedure and it's going to take longer to get my balance back. That's what I tell myself, lol.
Because of the balance thing I only drive very short distances, up to 5 miles from home. Because it takes everything I have to concentrate on what I'm doing it's very exhausting in what ever I do--driving, working. talking (forgetting words or names), short term memory issues-I forget simple things, like walking into a room and forgetting why I was there. Sometimes I feel so stupid because I can't remember the simpliest of things that just occurred and it takes a minute or two. I suppose all that can come from fatigue because it gets a lot better when I get A LOT of rest (like having the weekend to sleep or rest).
There's the SSD. I have adapted as best I can. It's still frustrating when I can't hear soft/deep voices or constantly adjusting the volume on the TV. It is frustrating for my family when I ask them to repeat what they have said or my "huh". My teenager will say--"nevermind". Hopefully, Anthem will grant my appeal for the BAHA. Sometimes it is nice just being able to hear out of one ear. When I go to sleep, if I lay on the good ear everything is blocked out making for a silent night.
I am having some "healing" pains from the surgical site. It is so tender and itchy. I have to watch how I lay on that side (that was my fave side I layed on before surgery). I cup my hand behind/over my ear kind of like a cradle so there is no contact with the tender part. Parts of the ear and surgical site are still numb. The doctor said the feeling would return in 6 to 8 weeks. It just feels weird. Like cardboard hanging off the side of my head instead of an ear :o
Although I have the balance and hearing things to deal with. The most important things are that the tumor has been 100% removed from my head (MRI in 1 year) and my facial nerve was not affected.
There is one good thing about the AN---it brought me to this site where I "met" some new friends that have/are having similar experiences and can relate to most of what I say ;D
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I'm sorry to hear about your struggles post surgery. It must be very frustrating. Hurray for the removal of your AN! I am sending you healing thoughts and support during this time of recovery.
Karen
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4 weeks is still so very early past surgery and it will get better. There are many who are not doing as much as you that soon post op. Don't over push yourself as the brain is still healing and the vestibular nerve on the other side has to learn how to handle it all now. We know it is frustrating as seems like it should all be more back to normal by now. The brain doesn't know that and takes time to adjust to the new overload and does for most. I wish you well! Cheryl R
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Let me echo what Cheryl R just posted. An ENT recently mentioned to me that after losing balance input to one side, the brain works much harder just to keep me upright. Balance compensation involves many processes and requires periodic rest as well as time. While I was allowed to resume jogging at three months, it took a full 7 months to feel the same as I did pre-surgery. And that time involved planned times to rest each day.
Because I had a large tumor and significant brain compression, I assumed I also had to adjust to the decompression effect of the surgery which takes time and rest. Any physical conditioning requires exercise and then rest to rebuild. Why should retraining your brain be any different?
Good luck
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Maybe I'm missing something in your previous posts, but you should have a healthy, intact vestibular nerve on your non-AN side, that just has to be trained to assume the roles of both sides.
I have several good exercises for speeding up this process, if you would like me to send them to you. Just PM me and I'd be glad to share them.
Best thoughts. Clarice
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Thanks to all for the advice and support. Clarice--you have been PM'd 8)
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kixit,
I know things are not back to "normal" for you, yet, but it seems to me that for four weeks post-op, you are doing great! I hope I do as well as you!
Liz
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Hi, Kix ~
Thanks for the update. Although you are dealing with some typical post-op issues, you also appear to be having a fairly good recovery. Regaining balance does take time and effort, so please don't be discouraged. I trust that your insurer will approve a BAHA unit for you but, as you noted, having the AN gone is the most important thing. Here's hoping your recovery keeps moving right along. :)
Jim
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Thanks Jim!
I guess I am a little impatient. I'm used to being on the move and with the balance thing, it has put it in slow motion and is very frustrating for me. My family jokes with me asking me "which alcoholic beverage I have consumed today" (I don't drink). My reply is, it's not a stagger it's my penguin swagger 8)
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Thanks Jim!
I guess I am a little impatient. I'm used to being on the move and with the balance thing, it has put it in slow motion and is very frustrating for me. My family jokes with me asking me "which alcoholic beverage I have consumed today" (I don't drink). My reply is, it's not a stagger it's my penguin swagger 8)
That's interesting that you call it a "penguin swagger." I have noticed that I am starting to walk a little bow-legged with my toes pointing out. Is that what you mean?
Liz
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Lol, no. I mean the way the penguins waddle is like me touching the walls when I walk. Touching one side then the other side (at work).
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Kixit-Thank you for sharing-you are teaching me a lot as I watch and wait-I share so many of your experiences and feelings-this site ia blessing. We are all praying for you. Carry on! Millie
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You're doing great, Kixit! Don't be discouraged! You're a get-up-and-go gal like me so it's really hard to have to be patient and wait while your body heals. It will though! My ear felt weird, too, after surgery--kind of numb, but tender as well. I'm in my seventh week now and the sensation has finally gone away. Give yourself a few more weeks and it'll disappear.
I'm rooting for you!!
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Sounds like you are doing quite well for 4 weeks out.
I can't believe that your balance will take up to 2 years though. The body tends to compensate faster than that. Have you tried vestibular exercises or a PT?
My teenager will say--"nevermind".
One of the reasons I opted for a BAHA was my two children (both 10 at the time of my surgery) who kept saying "nevermind" to me :(
I felt I was missing so many crucial conversations with them - and being a single parent 24/7 made it that much worse. I felt like I couldn't be there for them.
The BAHA made a huge difference in my life - and in my relationship with them.
Not pushing the BAHA here; just saying that you should look into some type of hearing "assistance" (which I think you already are).
Best,
Jan
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Hi Kixit,
Ditto for what a lot of contributors already posted. You're in the very early stages of recover, I can say with some deal of confidence - you will improve, although I never believed that in my early months. If you have the time, do a search here for a link to balance and what you can do. It's a fabulous piece of information. If any contributors remember it, please post it for her.
If you can, keep your legs strong, they help with the balance issues. I would suggest some decent walks after work in a good pair of sneakers. You will probable need Vestibular therapy, but you might be too early in your recovery for that. You will want to ask your doctors about that. Finally, never never give up, stay positive, it will take time - be patient.
God Bless.
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Lol, no. I mean the way the penguins waddle is like me touching the walls when I walk. Touching one side then the other side (at work).
Okay, now I've got the picture. :)
I seem to be needing to widen my base, for more stability. My partner has noticed my gait is changing, so it's not just my imagination. I wish it were.
Liz
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Just 2 more days Liz. I hope your pre-op time is going well. :)
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Hey Kixit, just getting around to reading your thread here! I know that impatient feeling you talked about! Funny thing is, you think it's never going to go back to normal, but then before you know it, all those funny pains and aches and other things that were so prominent at some point decided to sneak away and you never noticed. Like for me, I had middle fossa and they cut some of the jaw muscle on the scalp to get to the tumor. After surgery I couldn't open my mouth more than a finger width. It seemed like it took forever but then one day I just noticed it was completely normal...I had no idea when it got to that point. So hang in there! Let us know how it goes!
Take care!
Jay
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That was encouraging Jay. ;D
Karen