ANA Discussion Forum
General Category => NF2 => Topic started by: Raven on June 21, 2011, 06:49:37 pm
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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
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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.
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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
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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
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Welcome back, Tim - and thanks for your contribution.
Jim
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Quick hi to all our "new" members!
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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 .
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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
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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.
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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
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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.
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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?
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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.
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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 :)
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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.
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Jimmy,
I am sure it's because of the two ANs that they say you have NF2 even though the tests they did were negative. I would guess you are like me - the genetic damage is 'mosaic' - not in every cell in your body. Dr Plotkin at Mass General explained that there wold be absolutely no point in testing me.
What are your doctors recommending for treatment now?
Susan
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Hi everybody, I am NF2er, I loss all hearing in my left ear and the tumor had been removed 5 years ago. But 2 year ago I got the second in my right side (750 mm3). I was CK and after that my hearing almost recovery 1 year later. But now I sometime I can't hear anythings, my recent MRI test show no sign of the tumor so I thing the radiation worked (may be I am a special case?). I wonder if radiation have been destroying both the tumor and my neuro?
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It's been a while since I was here. My last computer crashed some time back and I kinda forgot I was a member here. I have NF2 but my symptoms are pretty mild. My AN's are only around 2mm each, just big enough to really detect. I have tinnitus on both sides, and some balance problems. Enough that the #1 rule where I work is that I'm not allowed to even look at a ladder. My own #1 rule is don't get caught. Hee Hee.
Mark
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Been a while since I have posted here. I am an NF2. First AN in 1988-it was 1.5Cm in left ear. had in surgically removed in Kansas City. Left me deaf in that ear-my hearing nerve was removed. In 2005 my face on right side goes numb at work-subsequent MRI finds a 2.5CM on right ear. Had 25 sessions of radiation at Johns Hopkins in 2006. I have had an MRI every year since. Last MRI showed that the tumor on right side is still stable. MRI showed a nodule on the Left Trigemenial Nerve. I decided on FSR Radiation after hearing of an NF2 lady in Texas, where radiation worked and shrunk both her tumors. She had FSR (5 sessions) in each ear at Johns Hopkins. I am totally deaf in the left ear since my hearing nerve was removed. I have around 30% left in the right ear, and can hear yet with the use of a hearing aid. My hearing has remained stable since my initial FSR treatment in 2006. So as far as I am concerned-it was worth to have FSR. I far as giving advice too someone else- guess one has to weigh the pros and cons. I will be 63 years old in February.-God Bless-Ron P.S. Hi Cheryl R.
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Ron, Good to hear about how you are doing! I so hope you can always keep what hearing you do have. April is my MRI time andso far seem okwith the hearing I had brought back in 2008. It gets hard to to not wonder with new noises here and there and is there is a new symptom now and then. I just hope the being older is in our favor as supposedly it can be for less chance of tumor return or growth. I will be 60 this summer and not excited over the age but am if means no more surgery ever!
I hope you are having as good a winter in Kansas as we are in Iowa! Always good to hear from you!
Cheryl R
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Hi Minh;
I believe sometimes those who are treated will experience an improvement in hearing. As radiation has potential to kill cochlear ciliary hair, then deafness may occur some months later.
But, the natural course of an NF-2 caused AN is that, unlike a normal AN, the NF-2 AN has the ability to impact, and grow within nerves.
In a sense then, oftentimes the nerves become part of the tumor.
I hope you can understand this as I'm unsure how good your English is.
Hi everybody, I am NF2er, I loss all hearing in my left ear and the tumor had been removed 5 years ago. But 2 year ago I got the second in my right side (750 mm3). I was CK and after that my hearing almost recovery 1 year later. But now I sometime I can't hear anythings, my recent MRI test show no sign of the tumor so I thing the radiation worked (may be I am a special case?). I wonder if radiation have been destroying both the tumor and my neuro?
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Hi Jimmy;
Remembering that NF-2 does not require bilateral ANs for Dx... Basically, it means "any two of" tumor types which might occur anywhere in the body.
The aggressiveness of the tumors at your age are also a sign of NF-2. One might remember blood tests are only about 60% accurate at this point.
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.
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Negative NF2 test often confirm 'mosaic NF2'. It is a milder form of NF2.
Ive been diagnosed (6 months ago) with mosaic NF2. I have a 10mm x 6mm x 6mm left side VS with moderate hearing loss and tinnitus. I also have a 15mm x 5mm hypoglossal tumor with no symptoms. I addition i have 3 tiny spinal nodules...about 6mm each.
Odd thing is i also have hearing loss and tinnitus on the right although no VS on that side..the theory (and doctors agree) is that I must have some noise induced hearing loss from being a producer in front of loud music for the past 15 years!If anything, this noise induced hearing loss mustve made me notice the 'overall' hearing loss on my left side earlier than if it had been just the hearing loss from the VS..
I too had a negative genetic testing for NF2 which confirmed my doctor's diagnosis of mosaic NF2.
So I guess you can add me to the NF2 list ;)
chris
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I have been having stabbing pains in the top of my head for the last couple of months. Not due for an MRI till June of this year-will be 6 years post FSR Radiation-25 sessions at Johns Hopkins. My wife called Johns Hopkins yesterday the 25th of January. They think the stabbing pain is caused from my Trigemenial Nerve on that side. Also Last year they confirmed I have nodules-not tumors on my left Trigeminal Nerve. They told my wife these nodules are characteristic of NF2's. I did not know that. They indicated in most cases they remain nodules-but in other's they may form a tumor. Anyway- going too move my MRI up too late February so we can see what is going on in that noggin of mine. God Bless All.
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Wow--lots of new "faces" since I was last here! I'll have to keep a better eye on this place :)
Dealy, good luck with your MRI. Be sure to let us know how it goes.
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unfortunately I think I qualify
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Welcome, Lou :)
I've heard some conflicting reports about your medical system; here's hoping it works well for you. One element that helps is that our tumors are usually slow growing, so hopefully you'll have time for the system to catch up to you.