Wonky head because of preserved branch of vestibularis?

[germangirl]

Dear AN-Patients,

I am writing from Germany (please apolgy for my bad english) for the first time in this forum. I hope you can help me with my (here in Germany ) rather rare symptoms after my AN-surgery . I am really desperate and do not know what to do anymore.

With the hearing loss, hyperacousis, tinnitus, neck pain etc. I could cope.
With what I cannot cope at all is the constant dizziness/wonky head and oscillopsia  after my microsurgery (AN approximately 1x1x1  cm,left side,  retrosigmoid/sub-occipital approach surgery January 2009).
I did my vertigo excercises, accupuncture, ayurveda, took betahistin etc. but so far nothing helped. As soon as I move my head  or body I feel kind of seasick, however surprisingly my balance is not really bad, its just inside my head.  It is ( and that is one of the big problems) very hard to explain, if you do not have it by yourself, however I read lots of threats in this forum describing „wonky head“, therefore I trust you know what I mean.

 My neurosurgeon assumes (however is not sure) the persistent dizziness comes from the preserved/remained nerv-branch sending wrong signals and thus interfering with my healthy side compensating my balance. He advised me to do a second surgery to cut the remaining branch of the vestibularis on the affected side (vestibular neurectomy).
(According to the surgery report  the Vestibularis Superior was preserved, the V. Inferior cut. However the caloric function test shows no response from the horizontal semicircular canal which is innervated by the Vestibularis superior. On the other hand the the click-evoked tests show that the V. Inferior works. It seems, that nobody knows exactly what has happened with my Vestibularis)

Another surgery seems like trial-and-error to me. I am not willing to risk this again. My last MRI shows no recurrence of tumor.
Another option would be gentamicin-injections.

Now my questions are:

1.Do you know, why this dizzines occurs? Why do I not compensate, like most of the patients? Do one have it, if one part/branch of the vestibularis on the ill side is preserved and thus does it makes sense to undergo a second surgery to cut the remaining nerve branch?
2.Is there someone with the vestibularis cut/destroyed completly on one side and still feels the way I do?
3.Is gentamicin an option?
4.Is labyrinthektomy an option?
5. I suffer from Migraine as well. Is there eventually an connection between migraine and insufficient compensation of balance after AN-microsurgery?

Every idea and advice is highly appreciated.
Thank you very much for your help and all the best to you all!!!

Yours
germangirl

[chloes mema]

Germangirl, sorry to hear about your symptoms. 

Have you tried Sea-Bands for the nausea?  They are bands you wear on your wrist with acupressure points; they've helped me.

Hopefully other forum members will have answers/suggestions for your other concerns.

Good luck.

Karen

[germangirl]

Dear karen,

thanks for your idea!

I bought them a long time ago. a friend suggested to try them against my horrible seasickness in planes (before my AN-story). They did not help me then and now when i tried them against my wonky head it had no effect as well.

Also the powerband did not help...

My list of what i tried is long...

But again thanks for the idea!

Best wishes

Germangirl

[mattsmum]

hi - sorry to hearof your struggles.
i am not sure if you have seen an audiologist with a special interest in vestibular disorders yet? if not would be worth trying to see one before surgery attempted.
i have been told that migraine is associated with balance disorders, so it could possibly be contributing to your difficulties.
i have oscillopsia after radiosurgery, and have been told that the central part of my balance system must have been affected to cause this (although not definitely how - but i did have mri changes in the cerebellum after treatment). my vestibular tests showed failure of compensation, but no clear reason why. i believe that it can 'just happen'. now a year into vestibular rehab i am much less off-balance and rarely fall, but the oscillopsia is still there although somewhat improved. i do feel that i am slowly getting used to the oscillopsia, in the same way i am fairly used to the tinnitus. are you still taking vestibular suppressants? i have been told they can interfere with compensation in some people?
best wishes,
vikki
ps your english is excellent!!

[chloes mema]

Morning Germangirl.  Meant to reply yesterday but then "lost" the thread so good thing Vikki answered you so I could comment back.  Fortunately, I have not had "bad" issues with my balance etc (other than right after my Vestibular Testing) so sorry I cannot give you anymore suggestions but so many of the other posts I have read seem to have some good suggestions.  I was reading some posts where people have tried a prescription drug to stabilize their dizziness and balance issues but for the life of me I can't remember the name of it. 

Best of luck to you and keep searching the posts and keep posting.

Karen

[germangirl]

hi mattsmum,
hi chloes mema/Karen,

I cannot tell how many doctors I have seen yet. Also a specialist for vestibular disorders. The weird thing is, that the compensation in terms of balance (they measured me leaning forward, backwards, left and right and similar tests) is not bad. But i constantly have this wonky head /brain fog (still the best words to describe what I feel). After seeing my good results, the doctor trivialized my complaints. i felt quite stupid.
He told me that cutting the remaining nerve branch would worsen the problem.
(are there two doctors in the world with one opinion??? )

i have also the feeling, that the combination of the dizziness with migraine is a very bad one. the migraine attacks seem often to enhance the dizziness even after the attack itself has ended.

With vestibular suppressants i was always very careful, since i know the negative effect concerning the compensation.

what i am really interested in is wether the the fact is true, that if one branch of the vestibularis remains, you have the risk of developing an
permanent dizziness.

I hope some members here have heard of that topic or can verify or falsify out of their own experience.

Best wishes to you both

germangirl

Thanks for the compliment for my English (I try hard and the online dictionary helps a lot. Still I write a lot of nonsens i guess...  )

[m4guzman]

Hi

I had my an removed 2 and a half years ago.  I am wonk headed all the time.  I do not
have trouble with my balance.  maybe once in awhile but nothing noticable.  I hate the
wonk headed feeling but I live with it.  Some days are better then others.  If I turn my
head from side to side my whole world spins.  The Dr do not understand this at all.  They
test my balance and say that I am fine.   I am beginning to think we just have to live with
it.

Marybeth

[germangirl]

Hi M4guzman,

thanks for your answer. I made exactly the same experience like you. The doctors cannot measure the wonky head, so it doesn't exist....

what would be very important for me: do you know (from written report of surgery), wether they dissected/cut ( i do not know which is the Right word in English..) the whole vestibular nerve? Or did they leave one root untouched?

I have an appointment at one of the best neurologist specialized on vertigo tomorrow, and in case i will get some useful information, which might help you (and others) i will definitely post it here.

all the best to you

germangirl

[m4guzman]

Hi
Sorry, I just saw your reply.  They told me that they did not cut my balance nerve.
How did your appointment go?

marybeth

[LisaM]

Greetings.  Thought I'd share this... I have consulted with two different doctors about surgery (I'm currently waiting and watching)  One told me he would preserve one of the vestibular nerves.  The other Dr said they would cut both because the brain has an easier time compensating the vestibular loss if both nerves are cut.  The doctor who prefers cutting both nerves is at HEI in Los Angeles, where they do acoustic neuroma surgeries everyday.  It seems that these acoustic neuromas are a bit unpredictable no matter what you do.  HEI does free consults so maybe you could contact them for some feedback.

Sorry you are having so many problems.  I do hope something helps to alleviate your dizziness very soon.  I will add that Kundalini yoga has many exercises that are very helpful with balancing the brain. 

[germangirl]

Hi LisaM,
hi m4guzman,

thank you very much for your information.

I wished, a lot more of the members would give a short info, which nerves were cut and wether they have wonky head. maybe then I could draw some conclusions and decide what way to go....

@lisaM: It is very interesting to read that at your place doctors seem to be of different opinions too, concerning the dissection of both branches of the vestibularis.

In the meanwhile i had my appointment in Munich (as I wrote: a well-known specialist for vertigo. The neurologist there says the opposite of the neurosurgeon: that the condition after the surgery is better, if they left parts of the vestibularis. It would be absolute nonsense (or an outdated opinion) that my condition would improve with "killing" the remaining vestibularis inferior either by neurectomy or gentamicin.

He thinks that a lot of my complaints after surgery are due to the fact, that I am also a migraine patient and are very prone to motion sickness.

He suggested to treat migraines with topiramat.

So far so good....but then he suggested to do lots of sports to prevent migraine..... ??
Why did I sit in front of him and tell him i am desperate, because whenever I move i get dizzy/sick. I would love to do lot of sports!!!!! But after a harmless stroll i have to lie down.

It is just like M4guzman said: they test you, the tests seem quite good and then the understanding ends. that drives me crazy!

but i try to save my adrenalin (if there is some left )

I send some good thoughts over the Atlantic to you both...hope it helps you with your problems

germangirl

[LisaM]

I saw you posted here: http://www.anausa.org/smf/index.php?topic=16323.msg979736163#msg979736163

Have you been tested for SCDS?  Sounds like you should at least get tested for it if possible.  I'll start a new thread surveying folks who had vestibular nerve cut and those who did not.  I'll call it: SURVEY: Vestibular Nerve Cut? Yes or No.

[Omaschwannoma]

Germangirl,

I had my vestibular nerve cut, but the doctor preserved (forget which one) one of the nerves in hopes of retaining some hearing in this ear.  After 3 years of 'wonky head' with increasing moments of feeling 10-feet tall, I went back to same surgeon who performed 2nd surgery to remove the left over vestibular nerve.  I felt great for three days only.  My symptoms of 'wonky head' returned, oscillopsia, headaches, hyperacusis, etc.  You can read my story in Balance Issues 'Why I didn't compensate'.  It took another three years before a wonderful neurotologist told me exactly what was causing my problem.  By the time I saw him in July for surgery I was falling for no good reason.  I was diagnosed with Semicircular Canal Dehiscence.  This new surgeon belives this 'hole' in my posterior semicircular canal was caused by the drilling of my AN surgery.  I think otherwise as I brought an bit of interesting evidence that my mom wrote down in my very old immunization record book.  She wrote that at the age of 10 years I was having feelings of being 10-feet tall, dizzy, nauseous and headache.  I had an EEG done to test for epilepsy but this came out negative.  I had these 'seizure-type' moments throughout my childhood and into my adult life.  No doctor I told seemed to know about this only telling me I should seek a psychiatrist!  Good thing I didn't believe them and go down that road.  Anyway, I digress, but contact Dr. Gerard Gianoli in Baton Rouge, Louisianna.  He also wrote a paper on just this problem with leaving behind one of the vestibular nerves.  Ask him about it and he will be happy to share it with you.  He will also be able to give you the answere you seek on whether a 2nd surgery will help you.  Look him up on the internet and you can contact him through there.  He will be willing to help you if he can.  I hope I have helped some. 

[germangirl]

Hi Lisa,

thanks for the graet idea of the survey.
I will answer there.

Please everybody who reads this and can contribute some facts - you find the topic under:

http://www.anausa.org/smf/index.php?topic=16449.0

best wishes to you all

germangirl

[kelstevens12]

   Hello everyone, I am Kelly and I am just today finding out I will be having a Vestibular Nerve Section of the right ear/brain.  I suffer from a very rare/severe case of Meineres of the right ear.  Everything has been done and nothing has helped.  I am 3 months next week of 24/7 spinning and I am exhausted.  Can someone please tell me how long this surgery takes?  I have to fill my husband in on this news when he gets home from work today.  I haven't worked since Nov. 18 due to this and we have been thru alot.  So I want to explain as much as I can to him.  I haven't driven a car, so i depend on others to take me to appointments so my husband can go to work everyday!  Thank you so much!