As far as getting the lumps or bumps removed, it absolutely terrifies me.....I was dx with nf1 in june when they removed a dermal tumor off my back and since then I have grown more of these on my arm and back, and up until that point I only had a couple of these bumps. So now I am scared to have anymore removed for fear of multiples of them growing!!

James, there is a clinical trial for neurofibromas that I just found out about. Perhaps someone else knows more about this but I thought you might be interested.

http://clinicaltrials.gov/ct2/show/NCT00657202

If I had the money, I would have them all removed. Docs don't want to turn it into insurance to remove them. At least any of the ones I have talked to. They really don't want to remove them at all. They don't seem to know about the new technology and have no desire to learn. I suspect Robert Redford has NF. He seems to have tumors on his face that come and go. But I am sure he has the money to remove them whenever they come up. I also suspect Teddy Kennedy has it for the same reason. I wish that someone famous would own up to having it and be our new "face". And benzar, you would probably have gotten those other tumors anyway. So don't beat yourself up about removing that one.

i agree that it is very expensive to have teh larger bumps removed, and since it is possible the bumps can come back, and new ones are always popping up, it almost seems like it's a losing battle. I guess I have more important things to worry about....

I've seen people on YouTube that for lack of a better term look like they have a water balloon on their face, because they've allowed the tumor to grow so large. I would think at some point, that person, or their parent if they're younger would have said "It's time to have it removed". It should be much less expensive if you remove it earlier.

Thank you very much for the link petals, it's always great to read about a new trail. It gives us hope.

You're welcome James. This is the first trial that I have seen for the dermal fibromas in the 2.5 years that I have been around.

It's not that they have allowed the tumour to grow that large, James! Some of these tumours are rather like an iceberg. What you see on top is not what's going on underneath. These jolly things have all kinds of roots and feelers that can go on forever, so unless you remove the whole thing, like a weed, it'll grow back.
Part of me had the bumps removed by ED for cosmetic reasons, but some of mine also itch!, especially after running, or some other kind of exercise. It's also costly. My surgeon in Dallas would code the insurance papers in such a way the the insurance company paid for it. :-)
And other bumps will grow... so it's an on going procedure if you want to be bump free.

mafrank, this is important. When we see people with major bumps on their faces and we think that could be us someday, that is very scarey. And I beleive that people have discriminated against me attempting to get a job because of it. I think we have enough doctors who try to make us feel bad about ourselves and our wanting to have these things removed not to have people who ought to understand give us the same crap. and Joolsrun is right, it isn't just the appearance, they itch like crazy, esp when you run. They get irritated by clothing and sometimes bleed. I think we have a right to be treated with compassion by doctors and to be treated! It isn't the insurance companies in my view, it is the asshole docs who won't even fill out the friggin paperwork! Okay, I feel better now.

I think if the technology exists, a person should do everything in their power to use that technology to give them a better life.

The video I saw was a girl about 14 and she had a tumor on her cheek that hung down about 5 inches past her chin. As I said earlier, it looked like she had a water balloon on her face. If I was 14 and my parents said "Sorry, but you're going to have to live the rest of your life deformed", I would wonder a few things.

I'm a child and they're my parents, so my wellbeing is 100% their responsibility and if it's a matter of money, then why aren't both of them working 4 jobs if necessary to provide me with the health coverage I need?

If health coverage won't cover it, why don't they do everything in their power to pay for it out of pocket? If it's an adult making the decision not to have them removed, then it's one thing, but as a parent, they have the responsibility to make sure their child is taken care of.

Especially if the parents have NF and knew their child would probably have it. They're the ones who decided to bring their child into the world with this horrible disease.

Sorry, went off on a tangent there.

As an adult, I plan to do everything in my power to make sure I get to keep looking a certain way. It's not just for the cosmetic aspect, but the pain aspect too. You've got to get the bumps before they get so big that removing will cause more damage.

having tumors removed is not always a clear cut choice. sometimes there are reasons why they are not removed. having the bumps removed is a person choice. if someone is comfortable with how they look then good for them! don't make them feel bad because you think they should have surgery to improve their appearence. that makes you no better than the "normal" people. I also understand completely about being discriminated against, thats everyday life for me... I make it my priority to prove them wrong...

James, I'm sorry but how much do you actually know about NF? Come on...Honestly! The type of tumor that you are describing in your last post is more than likely a plexiform tumor. This is not a regular neurofibroma that someone has neglected to have removed, or one that just became overgrown. These are congenital tumors and there are few good options for them at this time. There are many problems getting plexis removed, for starters some doctors won't touch them. They often grow back and they often bleed extensively during and after surgery. By the very nature of what they are, along with scarring from multiple surgeries, facial plexis can be disfiguring. I found the comments you made in your last highly insulting. The parents I know would give up EVERYTHING if they thought they could be rid of their child's plexi!!!

You said that having multiple surgeries can leave scars and be very disfiguring, but are you saying that having a balloon sized tumor on your face isn't disfiguring? Scars don't cause half as many complications as a huge tumor can, and the pain associated with these types of tumors is reason alone to remove them.

I would think if you're willing to look hard enough, you can find a surgeon willing to remove ANYTHING. Go overseas if you have to. I've read and seen several stories about these types of tumors being removed. In every story, the person was so relieved to be rid of the tumor.

I am familiar with that type of tumor, and I know that while they are difficult to remove, they're not impossible to remove.

Here's a great article that talks about this subject.

http://www.theuniversityhospital.com/healthlink/archives/articles/neurofibromatosis.htm

NFers, plexiforms or not, frequently get the "Gee why didn't he or she do something to help themselves".... from people who are ignorant about NF. Frankly, it's a little surprising to hear it come from another person with the same disorder. I sincerely hope you are never on the receiving end of something like that.

I have no idea what girl you saw on youtube, what her circumstances were or what country she was from. There are many types of large facial tumors that are not even NF related. Most plexis here would be operated on before they became that extensive. My point was that facial plexis even under the best of situations are far more complex a situation which can not even be remotely compared to having electrodissection for cutaneous tumors. A plexis removal is frequently a very serious procedure with many known potential complications. Your post implies that if parents just advocated appropriately for their children to have the surgery then the outcome would be so much better. Often it is not.

Not sure what I was supposed to take from that article. The lady described in the first part does not appear to even have had a plexiform.

As petals said, the girl probably had a plexiform neurofibroma. These are congenital, and nearly impossible to remove in full, especially in the face due to complex network of nerves/vessels that can easily be damaged.

Continuous debulking isn't all that great of a solution, nor is the possibility of neurological deficit acceptable to many, esp in the face. Everything and anything can be removed, but sometimes the morbidity associated with removal is not worth it.

It's also entirely possible, as it happens with cancer that incomplete removal lets the tumor cells proliferate on other locations... which leads me to wonder why doctors attempt debulking, but that's an issue on it's own.

Do you have a plexiform neurofibroma that's big? wrapped around vital structures? maybe you'd understand why some people 'don't bother' to get tumors removed if you do.

"I am familiar with that type of tumor, and I know that while they are difficult to remove, they're not impossible to remove. "

Not impossible? How do you know? some ARE impossible w/o killing the person. No amount of skills or technology can safely remove tumors that are wrapped around multiple vital structures with major peripherial nerves incorporated in it.

Anyways, I don't know why you make it your business what other people choose with their tumors, their body.