Neurofibromatosis Support Group
Neurofibromatosis is usually noncancerous. There are three types of this condition. Type 1 usually appears in childhood, while Types 2 and 3 appear in early adulthood. Type 1 can cause bone deformities, learning disabilities, and high blood pressure. Type 2 can cause hearing loss, vision loss, and difficulty with balance. Type 3 can cause chronic pain throughout the body....
Hey, looks like I might be going to see Dr. Weinberg in January or February of next year and I was hoping to hear from others who have seen him to find out exactly what he can and can't do.
Based on the picturs I saw on his website, it looks like he can get bumps that are on and under the skin. I was wondering how big of bumps he can do. I have some small bumps under the skin, but I also have 2 bigger bumps that feel more like a knot, or tumor. I'm wondering if anyone had something like this worked on. It might be best to have a dermatologist remove those. I also have some sections of skin with hundreds of little bumps that are so small, they look like goose bumps, but I know if a few months, they'll be larger bumps. I'm hoping he can do bumps like that too. I've read some people saying they go back to see him every six months to a year, does the skin handle this constant abuse well?
Even if insurance covers most of the procedure, it will probably get expensive going on a regular basis. I actually own the domain name NeurofibromatosisResearch.com and I'm thinking about selling it to help pay for my procedure.
I know I'll be doing a consultation before the procedure, but I just figured I would ask people who have seen him.
Has dermatology and plastic surgery receached the point where people with NF 1 can avoid most of the disfiguring aspects of NF?
Any advice anyone can give would be greatly appreciated.
Based on the picturs I saw on his website, it looks like he can get bumps that are on and under the skin. I was wondering how big of bumps he can do. I have some small bumps under the skin, but I also have 2 bigger bumps that feel more like a knot, or tumor. I'm wondering if anyone had something like this worked on. It might be best to have a dermatologist remove those. I also have some sections of skin with hundreds of little bumps that are so small, they look like goose bumps, but I know if a few months, they'll be larger bumps. I'm hoping he can do bumps like that too. I've read some people saying they go back to see him every six months to a year, does the skin handle this constant abuse well?
Even if insurance covers most of the procedure, it will probably get expensive going on a regular basis. I actually own the domain name NeurofibromatosisResearch.com and I'm thinking about selling it to help pay for my procedure.
I know I'll be doing a consultation before the procedure, but I just figured I would ask people who have seen him.
Has dermatology and plastic surgery receached the point where people with NF 1 can avoid most of the disfiguring aspects of NF?
Any advice anyone can give would be greatly appreciated.
Once the bump has been removed, and the skin has healed, what does the skin look like. Is this technique pretty much a bump eraser and the skin will be nice, clean and bump free?
Thanks
James
Maybe I'll talk to my parents about having a genetic test, because if they do have a mild case, it's so mild, that they don't have any signs. No bumps, no spots, nothing
Maybe I'll talk to my parents about having a genetic test, because if they do have a mild case, it's so mild, that they don't have any signs. No bumps, no spots, nothing
YOU sate you have no bumps, no spots., nothing. yet you
are seeig Dr. Weinberg. What the hell for? Which
story is true? No bumps, spots, NOTHING, etc. or ?
You may want to read a post VERY carefully before you open your mouth and make a fool of yourself. Here's the quote you used from my previous post.
"I'll talk to my parents about having a genetic test, because if they do have a mild case, it's so mild, that they don't have any signs. No bumps, no spots, nothing"
You then said "If you have no bumps"
Notice how I used the word "THEY" in my previous post? In the English language, THEY is not a word someone uses to describe themselves, it describes someone else.
I have bumps, I was saying my PARENTS "THEY" have no bumps and show no signs of NF, but my sister and I both have NF.
Also, previous is spelled "previous"
Thanks for playing.
Thanks for the post. I've actually been going to a local dermatologist and talking to him about the procedure and he might be able to refer me to a local plastic surgeon, but I've been doing some research and am actually thinking about a possible other option.
I'm reading a lot about plastic surgeons using a CO2 laser to remove neurofibromas. I've read about them using the laser for skin resurfacing on the face, so that would take care of the ones I have under the skin on my face and I've read about how the CO2 laser can be used to remove thousands of the bumps that occur on the skin.
When I go back to the dermatologist, I'm going to talk to him about this technique and see if he can refer me to a plastic surgeon.
Thanks again for the info.
James
He accepts SOME INs.
I'm now back in Australia and having the same surgery done here, hopefull in Feb or March. I'm on a waiting list.