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 â€žwonky headâ€œ, 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!!!