Neurofibromatosis Support Group

Hiya, you should not be ashamed that is the first thing I want to say, you are who you are and your husband and friends love you for that. I have had a "bump" "well I say bump it was like a flat bruised bump" removed from my face which I had done privately and have had a couple removed from my stomach and back via the NHS in the UK so never had to pay. Thoughts - only you can decide what to do and if it is really bothering you, then go for it. I must say I would never let mine stop me from wearing a swim suit etc etc on a beach. I am this way and that is it. Hugs and best wishes.

My genetic doc says it's best to leave them alone if you can. They can grow back (happened to me) and she says that sometimes the scar tissue from surgery can actually cause more harm to you then the neurofibroma.
In '07 I did have 5 removed from my chest area because they were all in places that my bra/sprots bra would rub. They have not come back and I have had no issues.
Good luck to you!

all the lumps that i have had removed on the outside have come bk. i tell the dr they are causing problems or bothering me so he will remove them. i now have 2 behind my ear where my glasses sit they are rubbing on them and makes wearing my glasses uncomfortable so next time i go to the dr i will ask him if he can remove them.

I have a mild case of NF and I do get mine removed on a regular basis. I was diagnosed 8 years ago and I have been getting them removed by a Plastic Suregon ever since. I have not had any of the removed ones return other than two larger ones. The only reason I know that the one on my arm is growing back is that he could not remove the whole tumor because he was afraid of damaging my nerve.(He warned me of this for this tumor, He said it was in a critical area and I could have lost feeling in my arm). I go to him every month to have one removed. I am currently scheduled to have surgery done with a another Suergon Dr. Weinberg in NYC who uses electrodessiccation to remove clusters of tumors. A lot of people with NF have gone to him so I am going to try it and see how it is. He has removed around 500 at a time for some people with NF. You just have to find a Plastic Suregon that is familiar with NF makes sure he gets the whole tumor.

My consultion is scheduled for Sept 18. I will probably have the surgery in October

My surgery is on September 17th.

I tell people I have the condition, but most are quite unfazed and could care less.
You really can not feel any of my bumps, but if the light hits just right well then you can see dozens.
All I care about is that it really does not get worse, because as of now the effects are minimal.
I do wish though, that I could have another child.
I could technically, but my son has NF and I do not know if I can handle passing it on again.

i just had my 2nd round of surgery with Dr. Weinberg on 8/13. If any of you have any questions on the procedure, costs, healing process, feel free to drop me an email. Dr. Weinberg actually cares and has no plans to retire anytime soon (I asked). I don't believe in letting them bumps keep coming..because they will. I believe in keeping them in check so you can have a somewhat normal life & appearance.
Check out his site: www.hweinbergplasticsurgery.com