ANA Discussion Forum
Archive => Archives => Topic started by: Dabs4811 on August 19, 2006, 09:13:49 am
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I had surgery April 27, 2006. I work full-time so am not sitting around doing nothing and my dizziness seems to be getting worse. I had to struggle to stay at work last week. I thought dizziness was supposed to lessen with time??????
Also find my taste buds going crazy, worse now than ever.
Thanks to all of you who share on this forum. You are life-savers!
Dee
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Dee,
Dizziness is different for everyone. I'm still dizzy almost thirteen months post-op. I think that there are meds you can take to help. Taste Buds? Everything tastes the same to me so I eat it all and pretend it is ice cream :o. For some balance is not a problem after PT or time. For others it will always be a problem. No two people are alike in this journey, but we all support you and will help in any way we can. I stop to smell the roses now, but fall into the briar bush ::) ::) ::)
BrendaO
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Thanks, Brenda. On my way into the house a few minutes ago, I gently fell into the porch railing. LOL javascript:void(0);
I will start smelling the roses! ! ! ! !
Dee
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Dabs
I'm 23 months post op and my dizzyness is worse now than ever. Seemed like it got dramatically better the frist 6 months, then kinda stayed the samefor quite a while, then at about 18 mo seemed to start getting worse. I push myself, go hiking all the time, great balance therapy even though I fall and get hurt often. Like the last post said, It's different for everyone.
Gettin an AN is kinda like a box of chocolates, you never know what your gonna get till you bit into one.
OOHHHHHHH did someone say chocolate? yum, even my tasteless taste buds still like chocolate.
Good lick, Just keep challenging yourself in the balance department
Patti UT
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I saw your note - no alarms here,
but I would suggest you report the
changes to your condition to your surgeon
I am unclear if you are simply trying too hard
or if something really has changed,
there is no easy absolute standard of balance - or taste
either way the OP was quite recent
so best to keep an eye on things ?
Best regards
Tony
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Dee,
Despite trans-lab, I'd still talk to your doc about another MRI and Gentamycin. I'm going to talk to my surgeon about gentamycin, too. Dizziness is hell.
Nan
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Dee,
The doctors or most say that dizziness lessens with time. I don't think many of them have had an AN! Meds help, reflexology helps (thanks for the reminder, Nan) I can't work because I was in bright lights, too much noise and balance and steadiness were part of the job. I've tried several jobs that I have not been able to handle, but I am sure in time I will find something. Dizziness is different for each of us. Mine is worse now than imediately after surgery or three months post op. You just need to tell yourself that you have a new normal and quit beating yourself up. We are a very elite bunch of people. No matter what anyone says, we are loveable. Maybe a little bwitchy at times but still loveable.
Brenda ((((((((()))))))))))))) ;D
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Dee, I am almost 9 months post op, translab. I have small lingering issues. My taste buds were crazier and crazier until about a month ago. At 8 months tastes started being normal and only once in a while do I have to stop eating because the sensations are just too bothersome. Maybe once a week I feel a little tippy and bump when I turn around and around in a small area. I can usually blame it on not getting my extra sleep.
One problem that has continued to plague me is sound induced tinnitus. I get a zsssst with every sound, and the most bothersome is the extra loud zsst I get inside my head or jaw when I chew. I am hoping a Cros hearing aid will help me ignore some of the noises. This morning I had to leave the choir loft because the speaker system just blew my ear away. Even an ear plug didn't stop the agitation I felt. As someone else said here. No two of us recover in the same way. I try my best to ignore symptoms and keep on keep'en on. I am so glad my husband understands my complaints. My life is busy and full.
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Dee,
I agree with Tony, it would be good to check in with your doctor about these symptoms to make sure everything is going OK. And if you haven't received vestibular retraining therapy, ask your doctor for it-- it helps.
I don't know when you went back to work. When I first went back to work, where I do a lot of computer related stuff, I found that my balance symptoms were worse at the end of the day than in the mornings. And by the end of the week balance issues were worse. These symptoms are improving with time.
Regards,
Rob
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I have a few comments and questions for you wonderful people who have responded.
Gentamycin -- An antibiotic, how does it help with dizziness?
I have an appointment on September 1 with my local physician. My surgeon involves a 4-hour round trip. I want to discuss dizziness and trouble sleeping. Last night I went to bed at 10 p.m. and last looked at the clock at 12:05. Have been trying Tylenol PM. I stagger even more when I get up during the night (usually twice), so maybe it is working. Thought I would try the PM earlier in the evening so it will kick in by 10 p.m. I have to be at work at 7:30 a.m. Also may talk with boss about flexing my work day -- coming in an hour later and working later.
"Dizziness lessens with time. The balance nerve on the opposite sides takes over with time". That's what I was told by EVERYONE. How much time does it take???? :-) Brenda, I think you are right on when you say the doctors doing the surgery haven't had it. I like the "new normal" quote. I think I can handle my job just fine for the next year-and-a-half (when I can retire), if I can just get the sleeping problem under control. By Thursday and Friday last week I was a mess. Today is good because I had the weekend to sleep later. I'm fortunate that I work as a secretary, love my job, and have a good supervisor.
Boppie, it was good to read from you that your taste issues have resolved. Hopefully, mine will too. My mouth tastes terrible and it's worse in the past two weeks.
Dee
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I'm courious on the taste issue. I've had two sinus surgeries over the past 8 years which realy messed me up. I absoutley have no sense of of taste or smell without the aide of Prednisone which is not a drug one should take on a regular basis. My new ENT is against the drug, so I now live in a very boring world. Oh, I failed to mention I have a 2 cm AN. Iv'e read that the facial nerve is responsible for taste on 2/3 of the tongue. The ENTs' can't understand my loss of these two senses. I sit here wondering what sensations if any I'll experience after surgery. I'm always hoping for a wonder drug. Perhaps the Retro sugery will jar something lose and I'll smell the roses (I can't even smell gasoline). If I have a break though I'll post. My surgery date is Thursday, August 24, 2006 and yes, I'm beginning to get pretty nervous.
Terry
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Dabs, whatever you do do NOT let your GP prescribe meclizine, compazine or anything like that--it will disable what residual balance system you have and make your symptoms worse, these medications are for nausea caused by motion, but GPs love to prescribe em for the ragin whizzies!--you need to see a neurologist, because what you have is a neurological problem. Mine sent me to a physical thrapist who was trained in helping with balance disorders. There is no magic pill for retraining your balance. Not sure about the gentamycin--google it. Or ask Raydean--she knows everything!
Capt Deb
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Dabs,  I was frustrated waiting so long (about 6 months before I felt the taste issue was improving.  Often it seemed to get worse instead of better.  It is a slow process that just heals in its own time.  But I tried every hokey thing I could to make it better. ÂÂ
A few things seemed to help.  I used Biotene toothpaste to improve my saliva production.  I brushed several times daily.  I avoided mouth washes with perioxide or alcohol.(Both made my tongue hurt)  I learned to chew slower to not agravate the nerves in my tongue so much that I couldn't finish a meal.  I stayed away from frozen cold stuff.  I ate chocolate smooooth pudding (cooked type using fat free lactade milk).  Dry toast seemed to abrade my tongue.  Try eating irritating foods upsidedown. Last, avoid eating piping hot foods.
Now, regarding the gentamycin...I understood it was thought to be so harmful to the ears that it is not favored any more.  :o
P.S.  If you can't smell it you probably don't taste it much, so eat the most fragrant foods known to test your smell and taste sensations . ÂÂ
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Dabs: there are medications for vertigo (I have been on Serc and Antivert), the Antivert really helped but I had terrible side effects from it, the Serc helps as well. I haven't ever taken them on the long term though they were ordered when I had sinus infections and the other balance nerve was affected by the infection (lots of fun, essentially no balance and constant spinning....sort of like riding the "Zipper" all the time). Anyway just to let you know there are medications to help with vertigo that maybe could be tried to see if they will help you.
Kathleen
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Reply to Dabs
I saw your note - ref in particular to fatigue
I have a small exercise for you to try
When you start to feel fatigue - or the balance fading
organise yourself a short rest.
To work, you must be sitting with eyes shut for 5-10 mins
- in a (stationary !??!) car if needs be.
you are not trying to fall asleep here
Basically the overworked (single) balance nerve causes sensations
of fatigue when the overall body is not really tired at all
- yes it feels it for sure
If you can "cat-nap" in this way it can "re-set" the mechanism
I find I can extend the day 4-6 hrs by this simple routine
Key is eyes shut - it helps shut down the overworked section
Good Luck with this
Oh, and if 99% of this list are comatose for the next 3 mths
-nothin to do with me guv !
Best regards
Tony
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Dee,
Gentamicin is thought to have side effects for some people that can bring on balance problems. So it would not be used to treat balance problems. Do a google search on "Gentamicin toxicity" for more info.
Regards,
Rob
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Dee,
I hope you have found some relief for your dizziness. I only had vertigo/dizziness during my stay at the hospital. I find the more i walk the better mine gets. Now i do walk like I am drunk, but at least I am walking. Good Luck, hoe you find releif soon.! ::)
Denise 8)
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Dee,
Nan again. In my NON-EXPERT opinion/knowledge, Gentamycin isn't usually used for translab since there should be no hairs left in there (it kills the hair/reception fibers, not the nerves), and not a risk to hearing since we trans-labbers have no hearing in that ear. My doc said there are some risks, but wouldn't say what. However, if you have residual nerve function, it might be helpful. It is injected locally, so can't hurt other ear. It is dangerous as a general anti-biotic because it DOES kill balance hair fibers.
After 8 months of misery, I am now on Klonopin which eases the dizziness. It is the only thing that helps me function. The Chicago expert dizzy doc I saw (Dr. Tim Hain) said even taking the meds, dizziness should resolve as long as we get rigorous exercise and do vestibular exercises. I gave up on them (sorry, Capn Deb) because they didn't help me. I have more complex reasons for dizziness, however, as I mentioned to you before. HOWEVER, I am now trying to walk 2 miles every day, which is HUGE for me from 3 months ago.
Hope this helps
DD (Nan)
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Tony, Yes, I agree with you on the eye rest. I sit in my chair with my eyes shut for several minutes when I feel fatigue. This works very well for me, too!
My husband and I have always had a fmily joke about Grandma's defence when we caught her napping, "Oh, I'm just resting my eyes". She was so smart. :)
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My former husband's dad was "resting his eyes" in church one Sunday, a long time ago, when the minister hit the pulpit to make a point. At that point, a man who NEVER was known to swear sat up and said, "What the h_ _ _! He was so embarrassed.
I called the surgeon's office a little while ago and the doctor-on-call phoned me. She couldn't attribute any of my symptoms to anything specific but I'll call my local ENT tomorrow for a visit.
Thanks for the responses.
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Dee,
Nan again. In my NON-EXPERT opinion/knowledge, Gentamycin isn't usually used for translab since there should be no hairs left in there (it kills the hair/reception fibers, not the nerves), and not a risk to hearing since we trans-labbers have no hearing in that ear. My doc said there are some risks, but wouldn't say what. However, if you have residual nerve function, it might be helpful. It is injected locally, so can't hurt other ear. It is dangerous as a general anti-biotic because it DOES kill balance hair fibers.
After 8 months of misery, I am now on Klonopin which eases the dizziness. It is the only thing that helps me function. The Chicago expert dizzy doc I saw (Dr. Tim Hain) said even taking the meds, dizziness should resolve as long as we get rigorous exercise and do vestibular exercises. I gave up on them (sorry, Capn Deb) because they didn't help me. I have more complex reasons for dizziness, however, as I mentioned to you before. HOWEVER, I am now trying to walk 2 miles every day, which is HUGE for me from 3 months ago.
Hope this helps
It's OK Nan, I've given up on them more times than you know, for reasons of my own. If you can take a short walk everyday, even 15 or 20 minutes, the results are hugely beneficial.
Capt Deb 8)
DD (Nan)
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Thanks for understanding, Capn Deb. I feel guilty for not doing the exercises, but...these tennies are made for walkin'--with pirate booties, of course.
xxxxooo,
Nan