ANA Discussion Forum
Post-Treatment => Balance Issues => Topic started by: Vivian B. on June 02, 2009, 11:43:02 am
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Hi Everybody,
Has anybody had balance nerve damange prior to being treated and if you have, have you felt dizzy. I lost 49% and apparently will lose the whole thing eventually. Has anybody ever heard of this, or is this part of the AN journey? So far, I have not felt dizzy only on fast turns and going up escalators. Supposedly my good ear is compensating for my left ear. But what happens when I lose the whole balance nerve?
Vivian
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Vivian .....
I'm sure someone else will answer this better than I but ...... From my reading and my understanding, since an AN is actually a vestibular schwannoma and a vestibular schwannoma is a tumor originating from the cells multiplying on the outside of the vestibular nerve (Schwan cells); when the AN is removed, the vestibular nerve is taken along with it. Since the vestibular nerve is the nerve that controls balance, that means the brain is no longer receiving balance signals from the AN side. In otherwise healthy people, the brain has a wonderful capacity to compensate using just the good vestibular nerve on the opposite side.
In my particular case, I had surgery between the CPA and the brainstem on my non-AN side 15 years ago, apparently resulting in damage to the vestibular nerve on my "good" side. I did not know it until my AN cropped up many years later and I began having severe balance issues. Tests now reveal no vestibular function on either side for me.
I would not call it "dizziness" because my world does not whirl around, but I certainly have the wonky head and drunken walk. I did have a bout with vertigo (extreme dizziness) about a month ago but I think it was a viral thing in the inner ear because it only lasted about a week and has not returned.
Clarice
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...what happens when I lose the whole balance nerve?
Vivian ~
Because of time constraints, I'm admittedly doing a cut-and-paste here that, I believe, answers your question.
When an acoustic neuroma is excised, the superior and inferior vestibular nerves are usually removed. The balance information which was being transmitted from the inner ear to the brainstem comes to an immediate stop. As a consequence it is not unusual after surgery for patients to experience some dysequilibrium.
The degree of dysequilibrium experienced depends on how much of the balance information was reaching the brainstem prior to surgery. If the tumor had destroyed the vestibular nerves so that no balance information was reaching the brainstem, then the brain will have already compensated for the lack of balance information from that inner ear. In this case, the patient will not experience any dysequilibrium after the operation. If the tumor only partially destroyed the vestibular nerves so that some information was still reaching the brainstem, then the brain will have only partially compensated. In this case, the patient will experience some dysequilibrium after the operation.
Following surgery, the brain needs time to compensate for and adapt to the lack of balance information it is getting from the operated ear. The time this adaptation takes is variable and generally unpredictable. It is generally felt that older patients take longer to compensate than their younger counterparts. Patients experience the most dysequilibrium immediately after the operation. Usually 2-3 days after the operation they are able to walk with some assistance. Approximately 1-2 weeks after the operation, head motions may trigger transient dysequilibrium. Several months after the operation, only the most sudden head motion may lead to momentary dysequilibrium. About six months after surgery, this momentary disturbance usually resolves.
The takeaway from this: because your brain is still receiving some signals from the damaged vestibular nerve, you may have (hopefully minor) balance problems, post-op. Fortunately, time and some work on your part (balance exercises) will resolve this problem.
Jim
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Hi Clarice and Jim
Thank you both for the information. It sure helps to get some clarification as you don't want to call the doctor everytime you have a question and sometimes when you look things up you get even more confused. Thanks again.
Vivian
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Vivian,
I have never done a formal vestibular test, and I have never felt any balance issues, either before or after GK. My ENT explained that the tumor may destroy the vestibular nerve very slowly, a fiber at a time. For those who are "lucky" to experience this very slow and subtle destruction, the brain has ample opportunity to compensate from the other side. I believe that this is what happens in my case, because although I have passed the very simple "heal to toe", "standing on tiippy toes", "holding hands level in front of me" etc. tests, I cannot believe that with an AN of my size the balance nerve is still intact. By extrapolation, I would guess that if this very slow process continues, then the balance nerve on the AN side will eventually be completely destroyed, without me ever knowing it. If on the other hand something dramatic, such as complete removal after surgery occurs, then obviously the other side would need some time to compensate, as Jim explained very well.
Obviously these brain functions are extemely complex and unpredictable. From what I have seen on the forum everyone is different, that's why some people have severe balance issues even with small ANs, whereas others with larger ones never have them.
Marianna
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Hi Marianna,
Thanks for your reply. What you said makes sense and I think that is what is happening to me. Although I lost 49% of my balance nerve on my AN side, it was so gradual that my left ear compensated pretty well as I have not felt it. Sometimes if I turn my head too quickly or going up escalators at work or in a mall I may fee a llittle bit off but nothing drastic. I guess after treatment, the same is likely to occur I would imagine maybe a little more off balance at the beginnig. I don't know. I guess we will have to see and continue on our one day at a time mission. Keep well.
Vivian
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Hi,
I know exactly how you feel, I had the test for the vestibular nerve I think it was called an ENT but don't quote me on that, and I have a 40% deficit. I was told that an acoustic neuroma can be closer to the auditory nerve, vestibular nerve or the facial nerve or if large enough all 3. Mine and apparently yours as well sits on the Vestibular nerve. So depending where the tumor is located will determine the symptoms....I have 100% perfect hearing, I just can't walk in the dark or stand on one leg...lol
We all have our issues as I like to call it....lol
Good luck to you
Dawn
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Hi Dawn,
Thanks for replying. That's whay I like about this forum that everyone always understands what you are going through as they have the same or similar problem. Did you decide on the type of treatment that you will have?
Vivian
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Yes I like this site for the same reason...none of my relatives or friends really get how I'm feeling or the anxiety/stress of making the decision on what to do....here it is so easy to talk.
I am watching on the AN as it is small only 4mm but as I said it sits on the vestibular nerve so I do have some balance issues but am dealing with them and doing balance exercises daily which has helped some.
I am more dealing with this Chiari thing as my headaches and ability to sleep/get thru the day is getting to be a problem.
Keep me posted
Dawn
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Hello Vivian. I am new to the forum. My name is Judith. I had my tumor removed in 1983 and all my balance nerves removed on the bad side. I still have balance problems. I get nauseous every day, particularly when racing around to do a lot. I take dramamine and eat crackers regularly. I have trouble walking in the dark and down paths, rows, aisles, sidewalks, crowded places. I walk like I'm drunk. It might have gotten worse with age. I'm not sure. I don't remember.
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Hi;
To my knowledge, the vestibular nerve is often not damaged by a single AN. It is instead crushed and stretched in the Inner Auditory Canal, IAC. If the nerve branches should be severed during a Translab surgery, the likely scenario is the other side will compensate. The vestibular and auditory nerves are sensory nerves vs. the facial nerve, which is a motor nerve. Motor nerves have the ability to repair given considerable time ( IF, not cut )
If the pt. has NF-2, then the vestibular nerve is invaded by the AN; The usual outcome being destructive; Oftentimes, both sides.
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Vivian,
Extreme dizzines was one of my symptoms that lead to the discovery of my AN. This is very common. My vestibular nerve was completely removed during surgery. I don't have numbers that measure my balance. However, I can tell you that I'm doing better w/ balance and dizziness now, 1 year post-op, than I was doing right before my surgery.
The reason Drs remove the damaged vestibular nerve is to put a stop to the mixed messages the brain is getting from a healthy nerve and a damaged nerve. Once the AN balance nerve is removed, the brain gets messages from only the healthy balance nerve, allowing for better balance.
Syl
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I had the ENG (caloric) test prior to surgery. No one ever told me the official results of the test, but I know from what I experienced during the test that on my AN side I basically had no balance nerve left. It seems that over time, the AN had completely squished (killed? LOL) that nerve without me even realizing it. I was hopeful that this would make my 'post surgery' recovery a tad easier since I had already compensated. As it turns out, that prediction was correct. I had my surgery 12 days ago and balance was one thing that I never had an issue with.
Wish I knew what percentage I had left prior to surgery so I could give you a better example of before/after, but in short-it seems that the more severely affected you are before surgery/treatment, the less compensating you may need to do afterwards. If I've learned nothing else from this board though, it's that everyone is so different in how they respond/react to treatments, that nothing is guaranteed!
Adrienne
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Hi;
Yes, I believe the compensation begins even before the resection. I suppose it does depend on how severe the balance is pre-op, however. After surgery, I'm unsure how long the 'cerebral clamp' will subdue the good side so as to keep things somewhat even.
If one becomes bilateral, I believe the "Gold Standard" test for remaining vestibular function is the rotary chair.
One thing about ENG, is that a person can be totally 'canal paretic' ( no response to calorics as vertigo/nystagmus ), and still have latent vestibular function in the nerve.
Have nice days, best you can at least, Adrienne and Syl!
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hi everyone,
i want to chime in on this subject, i am 26 months post-op and am still having balance issues. i am currently involved in vestibular rehabilitation (fifth week) and i exercise daily. i am so persitent because i am trying to defeat this thing and want to return to as much normalcy as possible. its (balance) has gotten better bit by bit over time. i still experience the wonky head or drunk feeling constantly. i've taken meds to no avail. i guess or hope its a time thing. just hang in there and keep check on this site as it is wonderful.
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Apparently there is no "norm" to the balance experiences.
After reading these posts I am partly encouraged and partly disheartened. I am almost 3 months post surgery and getting impatient with the wonky head feelings and how they limit my ability to do some of the activities I used to do, especially alone. My doctor said it takes about 18 months for the balance system to rehabilitate to whatever degree it can, and that's about the end of it. (Not an exact quote.) So now I have my fingers crossed about those end results. I practice daily, especially the things that bother me most (turning the head while walking, for example, or other similar head movements) and some days think there is improvement only to have another day seem worse. Most of all, I'm tired of the CONSCIOUS effort to move safely and relish moments when my head can be still so it feels normal! Hopefully, I'll get used to whatever it is I have to get used to, eventually:)
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Thank you everybody for replying. I guess we all have similar issues to deal with. Thanks for all your input.
Vivian
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Just want to respond to "karith"s post. I am 16 months out from surgery for a L side AN. Just within the past couple of months do I feel like I feel secure to walk outdoors alone (I have done it for months ..... just did not feel secure about it). Not sure I will ever feel secure walking alone outside in the dark.
I had my final visit with my vestibular therapist yesterday and since both of my vestibular nerves were affected (2 different surgeries) he cautioned me to always be very cautious on uneven surfaces in the dark. His advice was to carry a flashlight with me if I needed to be outside after dark ..... have not tried that yet. He also said that I could begin tapering off the daily exercises, but to resume them if I began feeling insecure again. If I have to get up in the night I am OK since we have many night lights throughout the house at home. However, when I am away from home, I keep my cell phone beside the bed and it lights up like a flashlight, which is sufficient to see.
"karith" you will find that you will gradually have less and less wonky head feelings ..... the progress is so slow sometimes that you need to look back farther to see how far you have come. Hang in there, it will get better!!
Clarice
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Hi Clarice
Just out of curiosity, what are vestibular exercises and do they really help ?
Vivian
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Vivian -
Vestibular exercises are great and they really do help.
My neurotologist had me doing them both pre and post op - and IMO it made all the difference in the world.
I still have a copy of the ones I did; if you'd like I can send them to you.
Karith -
while everyone is different, my balance was pretty much back to normal long before 18 months. I'm certain though, that at 3 months post op, my balance was much like you describe yours, so things will get better. Are you doing exercises on your own? or working with a PT?
Jan
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Vivian .....
As Jan said there are many different exercises vestibular therapists use, depending upon the patient's particular deficits/needs. Any of the exercises are valuable for most people with balance issues. The important thing is to do them in a safe environment: corner of kitchen cabinets, hallway, or with a spotter, etc. A quick google shows many sites for exercises ..... a couple of them: http://www.goldbaum.net/balance/Vestibular_Therapy.html http://www.dizziness-and-balance.com/treatment/rehab.html (excellent!) http://www.dinagoldin.com/anarchive/exercises.htm
In the process of looking up about exercises, I came across this excellent site for information on acoustic neuromas, treatment options, etc.: http://www.dizziness-and-balance.com/disorders/tumors/acoustic_neuroma.htm
As for helping ..... yes, they definitely did. In fact I can already tell if I skip a couple of days and do not do them, my wonkyheadedness is worse. It is a small price to pay (doing the exercises) for the feeling of security.
Clarice
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Thank you Clarice, Jan and Kerith. I will look up the link you sent me Clarice and I will start to dome exercices. Hopefully, it will enchance my balance which is not too bad , but I fiind I can't turn my head, I prefer to turn my body if I want to look behind me. Also when I am walking, I can't look downn or up, basically, I find that I am better off keeping my head straight and without too much movement.
Thanks again
Vivian
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Vivian .....
What you are describing is very typical of those of us with significant balance issues ..... turning whole body instead of head.
One of the best exercises I have done for that is very simple. I have a relatively long hallway from my living room to the last bedroom, which is very safe because of the walls/doors on both sides. I walk as quickly as I can (without banging into the walls) up and back 10 round trips, moving my head as quickly as I can from side to side. Then doing it again but moving my head up and down. At first I could only walk relatively slowly, move my head slowly, and not turn it very far. I have progressed to walking quite rapidly and moving my head much faster and farther. When I skip doing this several days in a row, the wonkyheadedness begins to come back. Doing this exercise is a small price to pay for stability ...... and besides it burns calories in a safe way!
Clarice
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Thanks, Jan. Good to know. I'm currently doing exercises on my own but am thinking of finding a PT to work with. I also think working at my small cubicle during the day is seriously limiting my visual realm/input and need to figure out ways to deal with that.
Clarice - thanks for the links. I'm going to print out some exercises I can do at my cubicle and pin them up to remind me.
Some days are better than others. I keep reminding myself how much improvement there is since the surgery and that the remaining improvements will naturally come more slowly. That's a GOOD thing:)
Back to work!
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I had radiosurgery in 2004. With a partially functioning vestibular nerve as a result I was experiencing significant dizziness and vertigo. I'm very happy to say that after my surgery (just 4 weeks ago) my balance has improved. The complete removal of the nerve has seen a big improvement over the partially functioning nerve.
My experience with vestibular exercises pre-surgery were marginal. It wasn't until I started pushing myself far beyond the normal that I made good progress. It's maddening that everyone's results are so different. It would be great to be able to say do X and Y will be the result but we are all so different.
Bob
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Bob .....
I didn't take time to look up the reference, but it is my understanding that a poorly functioning vestibular nerve is worse than a non-functioning one ..... meaning the poorly functioning one is sending erratic, mixed signals to the brain and the brain does not know what to do with it ...... hence the vertigo, wobbliness, wonkyheadedness, etc. persists in spite of exercises. This is why they normally remove the vestibular nerve during AN surgery ..... then the brain quickly learns to use only the remaining good nerve on the other side. Except for NF2ers or people like me with no good vestibular nerve.
I do know that the more aggressive one is on rehab of any kind, be it exercises or paddleboarding, the more quickly the brain adjusts. Congrats on a job well done!
Clarice
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One thing I have taken away from all the conervsations I've had on these message boards is that the return to fairly good balance takes a lot longer than the 6 months quoted in some of the articles on the internet. It's fairly obvious that MOST of us have wonky head issues FAR beyond that. In fact, it's hard to find a case where it didn't extend beyond 6 months or even a couple of years. What I think would really help is if we had some cases of wonky head subsiding after 1 or 2 years to demonstrate it can. Mine is improving and hopefully will continue to improve at just over 8 months post surgery. But at the rate it's improving, there's no way I will feel mostly normal before another 3-4 months and that may just be the optimist in me talking. I really think we need some more education on wonky head expectations.