Guest guest Posted September 4, 1999 Report Share Posted September 4, 1999 > > >But I have never heard this mentioned in NF literature; are they similar to >the little skin tumors than people with NF1 have? Also, at a recent meeting >with the PA Surgeon General, the NF Clinic Assoc of Pgh had a brochure; in >it was the statement " NF1 occurs about 1 in 3000; NF2 is much rarer, usually >about 1 in 40,000. >I thought I had heard the stat that NF2 waS 1 IN 12000 making it 3 out of 4 >has NF1 and 1 has NF2 (of those with NF); could you please tell me which is >correct and where you get your stats\/ ?? Hi Marie... one super BIG thing I learned early on in the Crew... " Stats say what they WANT u to hear, but people that have *been there, done that* tell you the truth. hugs, Jennette [Oregon] Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 5, 1999 Report Share Posted September 5, 1999 Caren, I have had several under the skin tumors removed, and none of them have grown back. Like others have said, they hurt when hitting them on something. Some of them were soft, some were hard. The hard ones always hurt the most if they got wacked. Fred Getz Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 5, 1999 Report Share Posted September 5, 1999 ok some info needed. what are you referring to as skin tumors? moles ? little red or brown bumps? cafe o'latte ? age spots? spilled coffee??? LynnBK Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 6, 1999 Report Share Posted September 6, 1999 little flesh colored bumps Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 1999 Report Share Posted September 7, 1999 Caren, I am a little late on reading my Crew mail, but I do have skin tumors. I have one rather large one in the palm of my right hand, one on my forehead, and one on my scalp. The one in my palm does affect the hand when I try to write or cook and I cannot grip things like I use to. The other two just feel like bumps and do not bother me! I have had a doctor look at the one in my palm, and he said unless it started to grow or really affect my hand that he would leave it alone. Sorry this is late! Donna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 1999 Report Share Posted September 8, 1999 Donna - I have like a little growth under my sking between dime and quartyer sized. It just came the last year or so and is above my left eye. I have bangs so you don't notice it and it isn't really that noticeable anyway. I'm wondering if these are NF2 related do they show up on the MRI? Thea Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 1999 Report Share Posted September 8, 1999 Thea, I do not know if they show up on the MRI, but they are NF2 related. I have almost the same thing above my left eye! I also have one on my scalp and one on my right hand. They are what is called a skin tumor that has been talked about on the Crew. I did not know why I had these either, until my Neurologist told me. I will see you in Houston, and am anxious to meet you! I can show you then what I have and compare it to yours! :-) Donna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 1999 Report Share Posted September 8, 1999 >I do not know if they show up on the MRI, but they are NF2 related. I >have >almost the same thing above my left eye! I also have one on my scalp and >one >on my right hand. They are what is called a skin tumor that has been talked > >about on the Crew. I did not k Yep they do...at least the one on the side of my head does. I can see it very clearly on the MRI Pete Quote Link to comment Share on other sites More sharing options...
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