Second MRI in Five Months:+.2 or.3mm

[millie]

On July 2 I had my second MRI and the neuroma, which was 1.1 x.5 x.? in February, has grown   .2 or .3 mm longer.  I was contacted by my two ENT's (one at NYU, one at Mt. Sinai) and told it would be appropriate to discuss the pros and cons of surgery vs. radiation.  From what I understand, those two centers do gammaknife only.
I have also sought another opinion from  Dr. Sisti at Columbia  since I had read about him on this forum and Columbia was rated so highly in U.S. News/World Report.  Dr. Sisti says  my tumor is a pretty typical acoustic neuroma, but if it were a student, he'd give it a C plus, because it is growing a little more quickly than normal.  He recommended gammaknife because of the size of the tumor and I guess, the location.  He said the fullness in the head and dizziness  goes away more quickly with surgery but with gamma, the feeling may subside  over time.  He said there is a good chance what hearing I have may be the same after... however, I do not have any useful hearing in my left ear any more (telephone voice in my left ear = the sound of Alvin and the chipmunks underwater)
Is there a great difference between gamma and cyber?  I don't think the screws in the head would bother me.
Dr, Sisti said with any procedure, the schwann cells can still be there and grow someday.
Am feeling pretty calm!  Symptoms the same.  Thanks everybody.
Millie

[chloes mema]

Millie

Sounds like you're doing all the right things with getting many opinions.  My AN grew 3mm in 5 months so my neurotologist said it was time to do something soon.  I had CK in May 2012.

I think other than the head frame for GK the biggest difference between CK and GK is that GK is done in one session and CK is done in several sessions (any where from 3 to 5 or more).  The way I understood it, the multiple sessions allows the healthy cells to re-couperate better.

For me the anticipation of CK was way worse than the actual procedure. 

I'm sure there are many others on this forum that can give you a much better explanation but I think that's the short version (# of sessions).  I received some excellent explanations from other forum members when I was doing my research.

Good luck in your decision making and keep us posted.

Karen

[millie]

I have heard from a doctor at the House clinic.  He did not have a copy of my ABR but said since I already have significant hearing loss in the left ear, that  sacrificing what hearing is left may actually be less confusing for my brain.  He said   surgery may  ease the full-headedness and disequilibrium feeling which seems to really bother me and may not go away with radiosurgery.  He suggested surgical removal via translabyrinthe approach.  He also implied there are great doctors on the east coast, and encouraged me to seek treatment.
I told him I have read that radiation may fuse the facial nerve to the tumor in some cases and make future surgery more difficult.  He said that was true.
I liked the doctor very much.  He was compassionate and caring having to look up my phone number since I had not sent it with the letter/MRI's.  He made me feel a little better.
That's all for now in the continuing saga.
I have also seen some videos on You-tube ...but they did NOT make me feel better.
Good night and God bless us, every one.
Millie

[millie]

I have spoken with another top ENT in NYC.  He seemed to endorse the translabyrinthe approach for me, but said I should have another hearing test to see how my left ear has degraded, I guess.  The doctor said he  and a neurosugeon had operated on a tumor very similar to mine just a few days ago.  I get the feeling he anticipates no complications. 
I felt comfortable with this doctor. I will see his neurorgeon next Tuesday.

[millie]

Looks like I will have to wait until my Medicare kicks in for surgery.  This means October1.  Right now, I think I am accepting the idea of translab and hoping for the possibility of complete removal and hopefully less pressure on my balance nerve.

[Jim Scott]

Millie ~

Have you definitely settled on the Translab surgery?  If so, where are you planning to have it performed? 

Jim

[millie]

I am considering Dr. Sisti's team at Columbia if I have gamma.
I am considering Dr. Roland/Dr. Golfinos at NYU if I have surgery(translab was the surgery noted)
I am still to speak with Drs. Smouha and Post at Mt. Sinai.
I am having a hearing test Friday to see what kind of hearing I have left in my left ear.

By the way-had a great day today having fun with my grandkids in my "bladder" of a pool (ugly but so refreshing!) and throwing together a quick bbq for a bit of family.  Need to do more of these great things in life!

Counting blessings.

Mil

[millie]

It is hard to come to a decision.  Each doctor I have spoken or met with has been most compassionate.  I am confident each doctor is excellent.  Now I actually feel bad because I can't have each doctor do a procedure on my head.  Add nutsiness to my symptoms.
My hearing test showed most of my hearing is gone in the left ear.
Does anyone know  why some folks get asceptic meningitis after surgery?
Thanks.
Millie

[millie]

I have decided to have trans-lab on October 17th at NYU.  That's my birthday.

[mindyandy]

Millie
You sound confident. I'm glad to hear you found your doctor and am not nervous. I was a wreck. Your birthday? Wow! We will be here saying prayers and good vibes your way. In the meantime keep us posted and when/if you start to get nervous we are here for ya.

Mindy

[millie]

Thanks Mindy-
I have bouts of anxiety but I try to temper them with doing things I really love-going to the beach with my granddaughter-sitting with a good friend--  I have been  forgetting things and I hope that's just normal stress.  I believe we have been blessed with some wonderful doctors and I'm going to pray for them too.  My mother-in-law used to say "Pray for doctors' hands."  So much of what our parents uded to say runs through my head these days!  Finally growing up.

[It is what it is]

Hi Millie.  It's been interesting to read about your process as you made your decision for surgery.  You sound clear and confident with this choice.  My thoughts and prayers will be with you. Your love for your grandchildren and your joy for life shines through!

Karen   

[Mickey]

Hi millie! Wishing you the best with your upcoming surgery @ NYU. I`m W+W with the same team your working with. I`ve done alot of homework on the subject over the past 5+ years and know that you`ll be with one of the best teams in the world. My prayers are with you, Mickey

[millie]

Thank you, Karen and Mickey.  Your words mean the world to me.

[millie]

Today is September 11th.  A prayer.  We will always remember.