Over two years after my diagnosis, I’m glad I am finally joining a group where the focus is on our very rare brain tumor.

While mine is not dead yet, I have ordered its tombstone as it is on life support. I’m lucky and cursed by tinnitus from it. Lucky because I never would have found it without the one million cicadas that suddenly began their scream in my left ear on October 15, 2021. I was going through tests for a sinus condition and had a CT just before the switch for the tinnitus flipped on. The CT was inconclusive and I asked if I could get an MRI because something wasn’t right. My ENT reluctantly agreed.

I like to get test results before my follow-up appointments and this one said Vestibular Schwannoma. What??? Of course, I went straight to Google to find out what the heck it was. I needed a Neurotologist. The one I wanted was booked until January. I chose another who told me that there were three options: wait it out and monitor, have surgery, or radiation (which he said I wasn’t a candidate for because my 8x5 AN was not big enough).

I decided on surgery because I wanted it out of my head. I started the process of getting a date, etc when January rolled around and I realized I still had the other appointment. A second opinion couldn’t hurt. I am SO glad I waited. This doctor had the exact opposite opinion. Small ANs were perfect for Cyberknife and surgery was better for larger ones.

I spent five days in early March 2022 listening to Tom Petty while my head was screwed to a table with my own specially-made mesh face mask. A robot whirled around the room for 19-21 minutes per day firing about 120 radiation lasers into my head. I had no side effects.

I find out next week where it’s at in its death spiral. Six months ago it was dead inside and was continuing to die from the inside out because the DNA, that its cells needed to reproduce, was gone.

Earlier I told you about the tinnitus being lucky. Well here is the curse. The 24/7 screaming in my ear has only gotten worse since it first started. I have tried just about everything but it is a steady, constant, never-wavering scream of cicadas in my left ear. Nothing alters it. Nothing. If you have ever been to a loud concert and had that ringing in your ears the next morning, times that times 100 and you might get close to my misery.

The current theory is that the left side of my neck and shoulder is so tight (its seriously like stone) that this is what is causing the tinnitus. As the tumor dies and shrinks, any tinnitus is supposed to lessen. Nope. I have had a time trying to get trigger point injections or medical Botox without success. I have another appointment this week and hopefully they can get it through my insurance.

Thanks for listening.

I agree with the previous post.  With that kind of pain, best to talk to a doctor.  It could be anything.  Guessing can drive you crazy, and could also be wrong.  Keep us posted.

Hi all.  This is for all those having trouble deciding what to do.  Just passed my 10 year anniversary since successful Translab surgery.  It's telling that it passed without me remembering - I have moved on with my life.  What a difference from when I was trying to decide.  I drove myself crazy.  My anxiety was so bad I had trouble eating and sleeping.  I lost 50 pounds.  Friends who saw me were very concerned.  I was a shell of myself.  But I made it through.

So for those who just cannot decide, are sick with worry, and think they will never get through this.  I am living proof that there is hope.  You will get through this.  If I can make it, so can you.

If you are in this situation, please feel free to reach out.  I know exactly what you are going through, and I would me more than happy to listen.  I also did a mountain of research, and would be glad to share.

Hang in there.  Do your research, then let your gut decide.  You will make it!!!

I had very mild hearing loss before the surgery. But not enough that I ever even noticed it. Only an official hearing test/audiogram showed it.  My only presenting symptom was single sided tinnitus. 
My understanding is that once the hearing goes, it can't come back.  But my hearing was unchanged before and after surgery, which is amazing. I got very fortunate. My doc (which is something of an expert with Mid fossa) he told me that there was a 65% chance he could save my hearing.  But the other 35% is that I"d wake up with it completely gone after surgery.  So I assumed a lot of risk up front for the best possible outcome and it worked out for me.
They actually put tiny monitor nodes on your hearing nerve during surgery so they can watch in real time if there is any disruption to that electrical signal.  Pretty wild!

Good luck.

Greece Lover, thank you for your note.  Did you have any hearing loss prior to surgery?  Did you get any back or did the surgery just stop it from getting worse?