Hi

[Mark H]

It's been a while since anyone posted anything here so I'm just saying Hi to my fellow deuces.
Mark

[producer]

hi!

sometimes no news is good news right?   


best


chris

[Raven]

Yea, no news is good news..........I saw my Dr. in November, he said "everything is stable, see you in a year"..........yay!

John

[producer]

Stable is goooood..!

 



chris

[Susan A]

Stable is definitely good :-)

[nftwoed]

Well Mark;

  I suppose "deuces" can be good in cards, as are wild. There is a "wildness" about NF-2.
  I find the NF-2 area on the group interesting, as statistics show 6% of those who start with a unilateral AN, will go on to be NF-2ers.
  Maybe given time, and this is sad thinking, but is it illogical to think the NF-2 area of the forum will grow as people age?
  I believe this web forum began in 2005 from the old ANA list serv email support group and guest book? I was there...
  Take care, fellow NF-2er!

[Mark H]

nftwoed,
yup, NF2 can be a real wild card. I've lost quite a few friends and have a lot more who are severely affected. I'm one of the lucky few who don't have much going on with it. I can still hear pretty well and while I have some balance issues they aren't too terrible. I'm not allowed to climb ladders at work though. 
Mark

[nftwoed]

Hi John;

  Great news on being stable! I'm happy for you!   
  Would sadly mention, however, in many who have an NF-2 AN still in, the tumor continues to damage either the cochlea or auditory nerve. Also, the vestibular nerve. Up to fairly late mid life to elderly, our bodies have good potential to produce either another AN or meningioma.
  I've known 4 and emailed 2 almost daily who passed away suddenly. They had had several surgeries but the cause of death was not tumor burden.
 From Wishart to Gardner degrees of severity... I am thankful to be on the Gardner end of the scale whereas the Wishart end can produce profound handicap.
  I'm 61, had first dizzy spell at 19, first surgery at 27 and now another AN, still in, to save what teeny bit of hearing is left ( 0 - 15% ). 10 spinal tumors all asymptomatic thankfully! My balance is awful. I get spells of true vertigo and have chronic oscillopsia with chronic low grade nausea and fatigue. The secondary peripheral neuropathy has gone central ( autonomic neuropathy ) so many body systems stemming from the Vagus nerve are affected.
  Who reading this has been subscribed to the NF-2 Crew?
  One thing I find astonishing is Drs relative ignorance of the disorder.
  Not fishing for sympathy here. Just awareness by even those who are unilateral of the 6% potential.
  Yes; NF-2, the very "wild card" is not predictable in any way and definitely not good even in a milder form.

[producer]

nftwoed,  yes im on the NF2 Crew, its a great forum..

I was diagnosed as Mosaic NF2 just 9 months ago at 37 yo, im 38 now. I have the one AN at the moment and certainly hope it stays this way for many years like in your case, or who knows maybe never get the other??  Still sucks to have to spend the next 40-odd years thinking about when the bomb will drop?

Im actually contemplating Avastin treatment to prolong my hearing on the AN, i have about 60% word recognition and about 50db PTA...but importantly im a music producer so it would require a huge adjustment if i were to lose my left hearing completely.

I guess im also on the Gardner end of the severity and for that Im am grateful..  I have 3 small spinal schwannomas but no symptoms and drs tell me i may never have to worry about them, i certainly hope that will be the case.

Its encouraging to hear from an NF2-er who is growing old-er without the devastating effects of severe NF2!

So if i understood correctly, your first AN removal was at 27 and then recenty the other was found?  When was each one diagnosed, how many years apart?

One more question if you dont mind, when were your spinal tumor found?  All together, or over the years, please provide some details as Im very interested.

chris

[nftwoed]

Hi Chris;

  Yes, the 1st AN was found when I was 27 in 1977. They did not have MRI then so I had to have a mylegram ( spinal tap, with contrast and x-ray )
  The second tumors... There were 2 on the right side vestibular nerve which were seen on MRI 17 years later. Of course no one knows exactly when the tumors start as generally, they grow slowly in Gardner pts.
  The 10 spinal tumors were all discovered in one MRI. Their number or size did not change in subsequent, yearly MRIs from 2000 on. They are about 1 - 2 mms, all located in the lower spine ( cauda equina )
  As a music producer, I would really try to take Avastin though I think it's still in study for AN, I believe, AND, expensive! Seems Avastin producer, Phizer's Genetech  Corp. has taken a recent hit with Avastin as it's been found not useful for breast cancer? I'm unsure if one can take the drug indefinitely and believe it only helps about 50% of those with NF-2.
  Guess I have read a couple stories where people in their 60s have had their NF-2 ANs grow rapidly after being stable. I think, however, most in mid life and elderly enjoy relative tumor stability. I'm thinking studies lean toward a somewhat lowered life span average for NF-2 of even the Gardner variety. Say, perhaps 64 years? Sorry, I don't have ready link.
  Each day w/o aggressive growth is a blessing! I hope you remain Mosaic, Chris. 

[producer]

Thanks for your reply.

I hope I wont have to worry about the right one for long time or ever.   We have applied for funding for Avastin so its a waiting game now.

The way i understand it (explained from a geneticist) youre born with whatever form of NF2 you have, it doesnt change during the course of your life.  So if youre mosaic then  its impossible to become classic NF2 since only  certain cells have the mutation, not all cells.

Also regarding age I read a recent study regarding NF2 severity etc, and there NF2ers  well in their 70's  so its all dependant on your tumor load and their effects on particular areas.


cheers


chris

[Cheryl R]

Since I have the "mild" version of NF2 and older adult onset I've never been concerned that I wouldn't be around into the 70's.  I feel very fortunate to have not been one of the younger ones with the severe form.       My hope is to be into the 70's with the hearing left that I was lucky to get back.  Time will tell.                           Cheryl R

[pjb]

Hi John;

  Great news on being stable! I'm happy for you!   
  Would sadly mention, however, in many who have an NF-2 AN still in, the tumor continues to damage either the cochlea or auditory nerve. Also, the vestibular nerve. Up to fairly late mid life to elderly, our bodies have good potential to produce either another AN or meningioma.
  I've known 4 and emailed 2 almost daily who passed away suddenly. They had had several surgeries but the cause of death was not tumor burden.
 From Wishart to Gardner degrees of severity... I am thankful to be on the Gardner end of the scale whereas the Wishart end can produce profound handicap.
  I'm 61, had first dizzy spell at 19, first surgery at 27 and now another AN, still in, to save what teeny bit of hearing is left ( 0 - 15% ). 10 spinal tumors all asymptomatic thankfully! My balance is awful. I get spells of true vertigo and have chronic oscillopsia with chronic low grade nausea and fatigue. The secondary peripheral neuropathy has gone central ( autonomic neuropathy ) so many body systems stemming from the Vagus nerve are affected.
  Who reading this has been subscribed to the NF-2 Crew?
  One thing I find astonishing is Drs relative ignorance of the disorder.
  Not fishing for sympathy here. Just awareness by even those who are unilateral of the 6% potential.
  Yes; NF-2, the very "wild card" is not predictable in any way and definitely not good even in a milder form.

I too have spinal tumors along with others throughout my body the doctors are saying that they are lipomas wondering if this is any correlation with having an AN as well.. I had some removed on my arm because they were getting wrapped up in the blood vessels and quite large but the others the doctors are recommending me to just leave them ?

Best Wishes,

Pat

[nftwoed]

Hi Pat;

  A few with NF-2 have cutaneous or sub cutaneous tumors, but in general, those are more commonly seen in NF-1. Are you Dx'd NF-2 with the spinal tumors. NF-2 really means "any two of"? One doesn't have to have bilateral ANs but they usually develop at a point.
  The Drs. cannot be 100% sure of the spinal tumor type w/o actually biopsing one. Only about 30% of spinal tumors related to NF-2 cause problems.
  The spinal tumors could also be schwannomas or ependyomas also. Not sure abought leaving them if they are causing problems, or, are unsightly. If I had to choose for myself, I'd want the skin tumors gone. One's skin is their largest bodily organ.