Intralabyrinthine schwannoma

[Karled]

Hi all,
I have an Intralabyrinthine schwannoma which started 11 years ago when I woke up one morning with tinnitus in my right ear, my first MRI revealed a meningioma on the left side of my brain, which was unfortunate because all ENT's after that focused it even though I was going deaf in my right ear. It took 6 years of a yearly MRI for any signs of the Intralabyrinthine schwannoma to show on the scan, by which time I was profoundly deaf in my right ear. I had given up on getting any help as once they found out what it was, they deemed it too difficult to operate, and too small for the gamma knife so I just had to live with. This would been ok because thankfully my left ear is fine until I started getting dizzy, which I am now permanently. I have had vestibular physiotherapy which has not helped, I have scheduled another ENT for a second opinion which will happen in June. My question is however has anyone had to deal with something similar, does anyone know if micro surgery could be successful. As far as I understand the damage is to the nerve and not the cochlear, but I'm exactly sure about that. This it the relevant part of my last MRI.

Diffuse enhancements of the right cochlear is identified. It does not extend into the internal acoustic canal. The cochlear is not enlarged when compared to its left counterpart.

Cheers

 

[Karin Mauro]

Sounds tricky. You may want to get a consult with a neurotologist since they share the surgery with a neurosurgeon. Maybe they could advise you.

[Karled]

Thanks for the reply :-)

[sleestak]

Good news - I actually have an intralabyrinth schwannoma. Bad news - there aren't many of us and I had a hard time finding anyone who experienced this the way we do.

I started out in a similar fashion. Deafness came first, then the dizziness as it encroached on my vestibule and balance center. The docs kept me on watch and wait because they said that in these cases it is unlikely for the tumor to go "outside the box" and onto the nerve. I eventually progressed to the point where my dizziness came in varying degrees:

• mild
• moderate
• strong - drunken sailor. Where I couldn't walk straight
• Full blown vertigo

Things like the barometric pressure shifting could increase this dizziness and even push me into vertigo. In cases where vertigo starts becomming a reality, I started carrying an emergency kit of Bonine (chewable Meclazine), Zofran (anti-naseau), and some ginger gum (also anti-nausea). I found I could fit this in a contact lense case that I cut in half so it was small and fit in my coin pocket. 

If symptoms gets really bad, esp vertigo, find a spot to sit and prop yourself up. Close your eyes and picture an imaginary spot in the darkness and fix your eyes on it. It will help resteady yourself. Then pop a meclazine and find a spot in the room to stay focused on for a while. Trust me when I say I am now a pro at this. Dealt with this dizziness and vertigo for years.

FINALLY, it came to a point where the tumor did grow out onto the auditory nerve and this Thursday I have surgery.

OPTIONS:

• First is watch and wait.
• Radiation - This was offered to me by the doc I was seeing, but I have read many places that its common for the tumor to grow before dying and shrinking back. I wondered what kind of vestibular ride that would take me on and it's not 100% that it will work. I also spoke to one of my vestibular therapists who had been in practice for about 18yrs - they are the ones who see the aftermath. She had mentioned she had seen better results with surgical resection.
• Surgical resection - I reached out to the House Clinic, who said they could open up the cochlea and remove the tumor and then give me a cochlear implant and seal it all off.  I think reached out to the infamous Dr. Friedman who said right off, "If anyone tells you they can give you a cochlear implant, run for the hills." What he told me is that in my case the damage was done and by going into the cochlea and trying to pick it clean, more damage would be done. The end result of a cochlear would be really bad hearing, not worth it.  I was already confortable with my deafness anyways.  His suggestion is the route I am going: full resection of the inner ear structures. I went to the university hospital here in CO and asked them what they would do (not telling them what others had said), and when they matched what Friendman had said, I knew I found my guys. They also get good reviews/results for AN surgery.
  
  Basically, I am never going to hear again and recent balance tests have shown that I have lost pretty much all of my balance function on my right side. So they are going to remove everything, leaving just the severed vestibular and auditory nerves. This will also include removing my eardrum, bones and ear canal since they aren't needed anymore.

This is probably a lot to think about and accept. But know that I do still have decent balance with my right side shot, I just get increased dizziness if I am moving around a lot or bouncing about.

EXPECTED PROGNOSIS (for me):
They believe that the dizziness I am experiencing is due to a crappy signal from my affected side. It causes confusion to my brain and by removing it all, I will be left with one clear signal from my good side, resulting in no more dizziness. Tinnitus has a very good chance of lessening or going away, also possible it will remain, very minimal chance it will get louder. Tinnitus is a tough one because they still don't know a lot about it. It can derrive from two areas: damaged cochlea or auditory cortex. Most likely mine (and yours) is coming from the damage in the cochlea.

---------------

Sorry so long, but I wanted to share whatever I could because I know our cases are even more rare than your typical AN. You will be hard-pressed to find many out there on FB, Reddit, or here that have or have had them....I found one other over the years and now you.

MY $.02 - Get your MRI and records together and reaching out to Dr. Friendman. He does a free consult and will give you his recommendation. If you want a second, talk to the House Clinic, they will do the same. I put more weight on Friedman because he has a LOT of experience with these and knows a lot about them.

Lastly, KEEP MOVING / ACTIVE on the days you aren't stumbling around...even on mildly dizzy days. Even just walking or working out. It matters. Even with my loss of balance function, I am able to ride a bike and snowboard. Once surgery is done, my recovery should be MUCH easier because I kept active while I was loosing my balance....it kept my brain adjusting.

[Mark F.]

Well I didn't see this post earlier, probably because it was before my surgery.  I had surgery on May 13th 2025.  Before my surgery my balance was horrible, also had the dizziness you refer to.  Mine was left side not right, like sleestak.  But I am living proof that you can return to nearly normal after surgery.  With effort on your part the road may not be as long as you might think .  I went from walking like a drunk toddler a week after surgery as I described it to posting my own personal  best time in the Turkey Trot 5k in only 6 months, after not being able to run at all for the year prior to surgery due to the balance and dizziness.  Now I am single side deaf, but that is the only thing that hasn't returned to normal for me now and I am just about to hit 10 months post op later this week.  Best advice I can give you is be as active as possible up till surgery.  I walked on a treadmill with handrails when my balance wouldn't let me run.  And walk as much and as often after surgery as you can because the more you walk the better your balance gets.  The balance nerve on the other side learns how to compensate.