Official NF2 roll call

[Raven]

As mentioned in another thread, it would be good to see who here among us are NF2. So, if you are NF2 please post and maybe tell a little bit about your situation. I will make a list on this post and check in from time to time to update it. I'm putting CherylR on the top for her willingness to always try to help us here, also Jeff and Silver Sonnet since they responded to the other thread. I know of some more NF2 people here and hopefully they will reply. Everbody here feel free to chime in with any thoughts or comments you may have..............thanks.

CherylR
Jeff
Silver Sonnet
Raven
Mark241
Luvzmutt
Timjk
Beck3258 (daughter)
Susan A
Marzipancat
Archer
MinhVietNam
Mark H
Dealy

[Mark241]

Howdy, put me in the club. Diagnosed in 05, golf ball removed Jan 06, located on C1, C2, it had compressed my brain stem  to a 45 degree angle, zero problems since. Large right AN removed retro style also in 06, 5 surgeries since to deal with csf and other issues, last one Feb 2011, so far so good. Pea size hitchhiker left middle fossa W/W, two spinal T3, L2 3mm W/W no growth in 6 years. Next MRI this July, funny I don't get to nervous about them as much. Have been taking bee propelis, turmeric, and B supplements for a year. 

[luvzmutt]

Please add me to the list, too, although I technically don't qualify. 

I have NF-1, and a unilateral AN, but I am probably dealing with some of the same issues treatmentwise when it comes to this.  I was told, because on the NF, radiation would not be a good option for treatment, if and when I need it.

Leslie

[Timjk]

Hello . My name is Tim Kimball . I live in Largo Florida ( Tampa Bay area ) . I am 56 years old . I was diagnosed with NF2 Nov. '07 . Surgery on right side AN February '08 at Moffitt Cancer Center U.S.F. in Tampa Florida . The tumor was 32 mm. at the time . It was re-sectioned preparing it for radiation therapy a year later . 28 low dosage treatments Feb. '09 . Bottom line is the radiation didn't work & the tumor continued to grow . It is now 40 mm. & pressing on the brain stem . I heard about the NF2 study at N.I.H. & have been part of it since April last year . I just had my 3rd visit . April & Oct.

I am scheduled for surgery 1 month from this Wed. Aug. 17th at NIH . My surgeon , Dr. Asthagiri , told me he expects the surgery to be 16 hours with him & Dr. Kim ( ENT surgeon ) overseeing the surgery . My hearing loss at this moment is 90 db right side 80 db left side . I was told 4 years ago by an ENT doctor at Moffitt to " start learning sign because if you live long enough you will be deaf . " That is the best advice I have ever had . In 4 years I have become very comfortable with my signing skills . I was told then that looking at the results of the word comprehension portion of the hearing test I was  " conversationally deaf " . I hear people talking but do not understand what they are saying . I call it sounding like Charlie Brown's teacher .

One side note to my story : I was diagnosed over 25 years ago with Charcot-Marie-Toothe , a form of Muscular Dystrophy . From my Neuro problems not associated with NF2 Dr. Asthagiri agrees that I have both . His comment was " What a hellova combination " .. The odds of that are 1-6,000,000 .

I was a part of this forum 4 years ago but haven't been on in years . I am back . Feel free to contact me with any questions / comments .
Tim

TampaTim! Thrilled to see you back here!   Had to remove your internet email address - nettiquette rules -- but folks can PM/email you here.  Looks like you rec'd my email and tickled to see you back here! You've been missed! Hang tough, m'dear and Go BoSox! Phyl

[Jim Scott]

Welcome back, Tim - and thanks for your contribution.

Jim

[Silver Sonnet]

Quick hi to all our "new" members! 

[Timjk]

Here is an interesting bit of information concerning radiation therapy . Dr. Asthagiri at N.I.H. told me they have found that people who have AN's but do NOT have NF2 radiation therapy works most of the time . People who DO have NF2 radiation therapy does not work . He has no idea why this is but it has been pretty consistent from all the patients he has seen . He is the head of the NF2 study at N.I.H.
NF2 patients are all he sees .. So he is pretty much " the man " in my book .

[Raven]

Hi Tim,

Hmm, this has perked my interest........I have very good hearing on my right side that currently has a 1cm AN. When the time comes that it needs to be treated, are you saying radiation (i.e. gamma knife) will not stop it from growing because I'm NF2?

Oh, welcome back to the forum.

John

[Silver Sonnet]

John, Dr. Asthigiri is my doc, too, and he has also stressed to me that radiation-type treatments do not tend to work well for Nf2 people.  That's not to say that it will  NOT work, but the treatment is far less likely to kill off or slow down the tumors in an NF2 patient.

Dr. Brachman at House Ear told me the same thing during one of our phone conversations.   (I agree that Dr. A is #1, so I give Dr. Brachman position #2    Both doctors told me that radiation often "excites" an NF2 tumor, causing it to grow rather than shrink.  I know House Ear has some information about this online somewhere, and I'm sure you could contact the National Institutes of Health and ask Dr. Asthagiri if he can recommend some reading material for you. 

[Cheryl R]

My Univ of Iowa neurologist is against radiation for NF2 also.     Regular ANs have the tumor grow on a nerve while a NF2 tumor has the nerves go thru the tumor which I would think would be part of the reason for more loss.           The NF2er has to have the best choice made for which side to have surgery on and when.             Mayos does say yes to some GK for some NF2 I have heard.                                           Cheryl R

[Susan A]

As of this morning, add me to the NF2 roll call! Left side AN and left side meningioma, but I also have a genetic condition called ring chromosome 22, so despite the fact that my tumors are unilateral Dr Plotkin at MGH says I definitely have NF2.

[Silver Sonnet]

Welcome to the club, Susan!  I'm sure you aren't thrilled about it, but if you have to have NF2, we're glad you're having it here with us

How big is your AN?  Have you and your doc talked options yet?

[Susan A]

My AN is 8 mm. Doctors Plotkin and Martuza at Mass General both say watch and wait. I have an MRI scheduled for January - it will be interesting to see if there's any change in the size of he tumors by then. If there is, that will be the time to start talking about options.

[Silver Sonnet]

Here's hoping for no growth!  But good you are having the MRI.  Although these things typically grow very slowly, it's good to be sure.  I've heard good things about Mass General

[JimmyD]

I am unsure.I am 55 now.When I was five I had a Glioma tumor removed from my Left optic nerve(they removed the eye and optic nerve).In 1999 I had a 2.2 cm AN radiated at Johns Hopkins Hospital.Shrunk no regrowth.In 2006 I had a 2.6 cm left side AN treated with 30 sessions.It is now regrowing and pressing on Brain Stem.I was tested for NF II and the results were negative but all my Dr's say I have it.