Tinnitus/Sign of Hearing coming back?

[mmjgg123]

After my retrosigmoid surgery, the surgeon said he preserved my hearing nerve, even though after 3.5 months later, I'm still deaf.  The tinnitus is getting louder.  Could that be a sign my hearing is coming back?  I have to have the rest of the tumor removed in about 5 months via GK, then the other AN (on the other side) removed after that.

Mary G.

[arizonajack]

After my retrosigmoid surgery, the surgeon said he preserved my hearing nerve, even though after 3.5 months later, I'm still deaf.  The tinnitus is getting louder.  Could that be a sign my hearing is coming back? 

Not likely. Tinnitus has nothing to do with hearing or lack of it. I've been deaf in my AN ear and have very mild tinnitus that sometimes changes in the type of sound but not the volume. The tinnitus in my good ear hasn't changed at all in the ten years that I've had it.

[Echo]

Hi Mary,

I can't comment on your tinnitus, but your Dr. should have made it clear for you, that when you have GK (Gamma Knife) the tumor is NOT removed from your head.  Gamma Knife is a radiation treatment that very slowly kills off the living cells within your acoustic neuroma.  Because the cells are on average very slow growing they also die off very slowly.  Gamma Knife is used either as a primary treatment for those wishing to avoid surgery, or it is used to help kill off remnants of your AN post surgery if your AN was of a larger size. 

Cathie

[mmjgg123]

Echo, right, the GK will be targeted towards the remnants of the first tumor.  I I think that is how he said he kept my nerve intact, even though I'm still deaf. I imagine there will be another chance of damaging the nerve with the follow up GK in a few months.  Then we will decide on what to do with the other AN.  I think given the size of the tumor, 1.5 cm, it's a candidate for GK.  But I'm one of those eope who just want that thing OUT of me, and am leaning towards another surgery.  Isn't hearing preservation around the same chance for GK and retrosigmoid?  I have a lot of things to think about....radiation and its long term effects (I'm only 35), and it doesn't eliminate the tumor, and i'd have to get lifelong checks.  And then there's the loss of hearing that is a possibility for each 'method.  I have pretty bad facial weakness right now, 3.5 months after first surgery.  Just yesterday I saw a very minute movement that resembled a smile on the surgery side.  So weighing all the risks; hearing, facial paralysis, radiation effects over time, and just wanting it out, are issues I'll bring up to my surgeon, but in the meantime, I'm getting a second opinion at Mayo pretty soon.  I will be very interested in their take on my bilateral ANs in comparison with my first surgeon, and my prognosis.  I don't want false hope that i'll get all my hearing back and gain my old face back as well.  I don't know....hope for the best, expect the worst?

[Echo]

Hi Mary,

Yes I believe hearing preservation with GK is similar to Retrosigmoid, however, my neurosurgeon told me in all likelihood my hearing would be completely gone within 3 or 4 years post GK.  I'd like to prove him wrong, but time will tell.  My word discrimination keeps bouncing around from 20% to 40% and back again, but at least it's still usable.

I'm so sorry for the tough time you are having.  Hopefully the wonderful Dr.s at Mayo can help you sort things out and perhaps you can reach a decision regarding treatment.  I fully understand wanting to get the darn thing out and at 35 years young, GK would be a much tougher consideration than it was for me at 58.  I wish for you all the best and hope that you find the help and support you surely deserve!

Cathie

[From nurse to patient]

I know this isn't the answer you were hoping for, but my understanding is that often tinnitus is a result of deafness in that ear - since the brain isn't getting any sound stimulation, it just kind of replaces it with the tinnitus. Sorry, I have it myself on my deaf side & know it can be maddening. I have noticed that it gets worse when I'm overly stressed or tired, or also if I've been in a loud environment for a while; not sure why, but at least I know some things to avoid to try to keep it manageable.