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AN Community / My AN story
« Last post by Hampshire82 on December 10, 2023, 11:30:32 pm »
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.
Post-Treatment / Re: 3 weeks post-op translab at UCSD - my experience so far
« Last post by v357139 on December 09, 2023, 10:33:48 pm »
So happy for your great result.  Don't push it.  Getting lots of rest 10 years ago was how I did it.  And I am doing great now.  Congratulations!!!
Post-Treatment / Re: New Pain 3.5 years since translab.
« Last post by v357139 on December 09, 2023, 10:28:59 pm »
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.
Post-Treatment / House Clinic - Administrative
« Last post by v357139 on December 09, 2023, 10:19:08 pm »
This is a shout out to Brenda who works for Dr Slattery.  I called to schedule my next follow up MRI and had a great experience.  I had read some posts in past about people having administrative issues after surgery.  I made one call and Brenda took care of everything.  Within a day of my call she sent had contacted my insurance and also the MRI facility, and emailed me my scrip.

Brenda is top shelf.  Just like Dr Slattery and Dr Schwartz who did my successful Translab surgery at House 10 years ago.  They are all the best.
Pre-Treatment Options / Decision Anxiety
« Last post by v357139 on December 09, 2023, 10:05:41 pm »
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!!!
Microsurgical Options / Re: Middle Fossa - Canada/Toronto
« Last post by BradH on December 08, 2023, 08:32:25 am »
So happy it worked out for you.  Did the Tinnitus go away?
Microsurgical Options / Re: Middle Fossa - Canada/Toronto
« Last post by Greece Lover on December 08, 2023, 08:07:53 am »
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.
Insurance / Caresource - Marketplace Insurance
« Last post by mpdeem on December 07, 2023, 08:23:33 pm »
My insurance is Caresource via Marketplace.  Wondering if surgical centers such as UC San Diego, House Clinic accept Caresource or other Marketplace insurance plans.

Would be interested in hearing from anyone who has insurance coverage through Marketplace - especially Caresource.

I developed unilateral (left ear) tinnitus in July. Initially thought is was side effect of new vasomotor medication, Veozah, which i had started 8 days prior to onset of tinnitus. Veozah is a selective Neurokinin B receptor ligand which binds to NKB receptors sites on KNDY neurons in the hypothalmus.  Tinnitus remained despite stopping Veozah in mid July. 

I had a hearing test last week which showed moderate hearing loss in effected ear.  Hearing loss could be from earlier ear drum perforation which occurred two decades ago (from a bad sinus infection, blowing my nose repeatedly). 

My ENT appointment is not until Jan. 16th.  At this point I have no further testing, imaging, or diagnosis but am preparing for the worst in the event it is an acoustic neuroma or other type of tumor. 

I live in Indiana and am self employed, working part time from home.  My husband is retired so I do not have a lot of options in terms of insurance.  Our combined income and assets disqualifies us from state plans like Healthy Indiana Plan (HIP)/

All responses and advice greatly appreciated.
Microsurgical Options / Re: Middle Fossa - Canada/Toronto
« Last post by BradH on December 07, 2023, 12:59:28 pm »
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?
Microsurgical Options / Re: Middle Fossa - Canada/Toronto
« Last post by Greece Lover on December 07, 2023, 12:26:21 pm »
I can't help with the Canada part, but your circumstances are quite similar to what mine were at diagnosis. There are fewer places familiar with Mid fossa because there are fewer types of tumors and reasons to do a craniotomy that way.  But, it does give you the best chance at saving hearing.  I hope you find someone in Canada with a lot of experience.
Good luck!
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