Acoustic Neuroma: Balance issues years after treatment

@mollybrownbeard, I can imagine that having persistent balance issues years after treatment is a nightmare. Can you share a bit more? Has your neurosurgeon been able to explain how treatment may have affected balance or the vestibular nerve? Have you worked with a physical therapist for vestibular rehabilitation?

I can relate to your balance challenges. While I had GammaKnife treatment for my two acoustic neuromas 17 years ago, I didn’t have balance problems until a year ago. I’m grateful for that stability period, however, I went from aerobics and line dancing five days a week to chair exercises only and using a rollator with every step I take. My doctor explained years ago that the acoustic neuromas were slow growing—but they do grow, despite treatment.

Unfortunately physical therapy did not help much. So I just make the best of each day and take great care not to fall.

I had surgery to remove my acoustic neuroma 16 years ago and now I have to use a walker or cane because of my imbalance.. It has taken away my ability to enjoy my life. I am so out of balance that when I walk I am afraid people will think I am drunk! I can’t go into a store or grocery shop any longer. I am so unsteady I’m afraid I will fall. I have fallen a number of times including a fall which caused three staples in my head and concussion. I’m 80years old women and still feel my health is excellent except for my balance. I’m perfectly ok if I’m sitting. Strange!?

I know exactly what you are going through, but I hope you will take heart. The most important part of your message is that (other than the major balance challenges) you still feel your health is excellent,. So….Keep on walking so that you can keep on walking. At times, I feel self-conscious about my wobbling, but with my nifty rollator, I get more confident, hold my head up high and walk more securely (but slowly, too). I have to work hard not to feel sorry for or embarrassed by my growing infirmity. Rather, I focus on all the things I still can do at 76 years old. We have an adventurous journey, don’t we? Please try to focus on your otherwise excellent health, and tell yourself the challenges are manageable. At least, I hope for you.

I just wanted to reach and “walk” with you in a way. Slowly and very carefully. 👍

@mmm thank you so much for your comments.. its debilitating but I have to many things to do to quit!
Thank you

@mmm thank you so much for the words of encouragement. Your kind thoughts are much appreciated

@colleenyoung the doctors I see now just shake their heads. I went to Balance therapy for 7 months with absolutely no improvement! I’ve had many MRIs and scans with 5 different doctors, neurologists, ear nose and throat , neurosurgeon, and a radiation oncologist who gave radiation to the area to see if it could shrink the scar tissue from the removal of the tumor…worked for a short time. Now it’s worse than ever! During the initial surgery 16 years ago all the vestibular nerves
in my right ear we’re severed. I am also deaf in that ear. I have tried everything to no avail!

@cherides, I appreciate everyone's insight on your journeys.
Hello, my dear. My name is David. I am 66 years old. I have a vestibular schwannoma in my left ear nerve. (I refer to it as Bob). I still have partial hearing in that ear. My balance is ok most days. I have not driven myself anywhere in 8 years. A few months ago, we found out about my tumor. I did what most people do these days: I searched Google and YouTube to see what it is. I was actually excited about the possibility of being able to explain a lifetime of what I thought were mini strokes. But this was not to be the case. The first neurosurgeon let me know the symptoms I was having (except hearing loss) were most likely not associated with Bob. However, when I pressed the discussion on my left eye and left facial numbness issues, they did not think Bob was causing this. And, the pressure in my skull and constant migraine headaches were definitely not a known issue with this type of tumor. They recommended the Gamma Knife. I did not want to slow or stop the growth; I want Bob gone. I do not like the idea of radiation in my head. I think it would add more questions when the next event happens. They were matter-of-fact. The Gamma Knife was the only way to address Bob.

I scheduled a second opinion out of state. A few weeks later, we visited with a second neurosurgeon team. They also recommended the Gamma Knife. They would not think about cracking my skull open until I addressed my other health issues. They let me know that Bob was 2.4 cm and we should monitor its growth with another MRI in a year unless symptoms change for the worse sooner. From their experience, they advised I should not have surgery until it is necessary. The possibility of worsening effects on the facial nerve and total loss of hearing and balance issues, as well as other complications, was too great. They also noted that in some instances, if it's attached to the facial nerve, they have to leave some of the tumor to avoid paralyzing that side of the face. This could grow back a few years down the road, requiring the Gamma Knife anyway. The plan forward is to wait and watch.
So, I am working on controlling my migraines. Morning sun is the worst.

I'm a 63 yr old female, My left acoustic neuroma was dx in 2014. I had the linear accelerator procedure at Jefferson in Philly in 2016. After two years of "watch and wait" with Penn. Initial left sided facial drooping, but thankfully that resolved. Tinnitus and hearing loss managed with hearing aid. Balance is ok, for the most part, except at night, I need a walking stick (far too cool for a cane) However recently I have been experiencing daytime balance issues and vertigo. I feel sea sick most of the day. My 2 yr MRI is due in 3 months. The last neurosurgeon I saw was dismissive, telling me my tumor was "fine". As a psychiatric NP, I found that laughable. So I am going back to my ENT for management of vertigo. Meclizine knocks me out, and I am a very busy provider, so I hope a scopolamine patch will be prescribed. And maybe he can order my next MRI, so I can get this done after the holidays. I don't know if this helped, but just to let you know you are not alone. After reading all of the comments, our successes are varied as we are.

Thank you for sharing your experience, and please keep us informed. May the force be with you!