I am amazed that James, seems to think that anything and everything is possible, sometimes working mutiple jobs, will not bring in the money for treatment.

Qualified doctors for this is also an issue, if more doctors dealt with this ailment, then Dr. Weinberg would not be so busy.

From your last two posts (swinging and this one) I am begining to wonder whether you really have NF.

Lennin, you hit the nail on the head! We need more docs to be educated on this. I get so tired of having docs look at my medical history and say, "neurofibromawhat?"

Lennin, are you saying people with NF aren't capable of swinging? Ive been very lucky to have a mild case, but starting about a year ago, I started getting more bumps, tumors and cysts.

I can upload some pictures of my bumps if it will make me qualified to express my opinion. I didn't see anything in the terms and conditions of this group saying that you had to turn your brain off and not express your opinion if you want to be a member.
There is absolutely NOTHING wrong with me expressing my opinion and just because it's different than yours, doesn't make it wrong.

Marah,

Hopefully the next wave of new doctors coming out of medical school will be more familiar with NF. In December, I went to see a new dermatologist and he's a young guy who's only been out of medical school for a few years and he said he had training in school on "things you'll probably never see, but need to know about" and he was extremely happy to see me. He actually used an instrument called a hyfrecator to burn out 2 of my bumps, and theyve gone away completely, but it was pretty painful, so I definitely wouldnt want to get them all done while Im awake. I also sent an email to Dr. Weinberg and he said he doesnt use a hyfrecator, he uses a unipolar cautery device

Unfortunately, because I need a lot of bumps removed, my dermatologist said I'm going to need to be put to sleep, so he referred me to a plastic surgeon, but when I went in to see him the second time, he had actually done some research and found a medical paper written by Dr. Weinberg back in 2006 that describes the ED procedure.

The plastic surgeon can't see me until the middle of February, so I'm going to mail that article to her so she can research the procedure and maybe she'll be willing to try it, or if not, maybe she can let me know so I don't have to wait until the middle of next month to find out I need to keep searching.

If she can't do it, I'll probably head to New York, or I think someone mentioned a doctor in Texas. I think the doctor in Texas takes insurance, but I need it done, so either way, Ill get it done. I really don't want to wait any longer than I have to, because it seems I have new bumps every day and I can see hundreds of bumps ready to start growing.

Part of the reason some doctors can't/don't perform ED is because they don't have the instrument. These devices are expensive and they aren't going to purchase a new one if they already own a device for cauterization.

So they can learn all about the technique, and know how to do it but w/o the same device Dr. W uses, no dice.

James, The Children Tumor Foundations Discussion Forum has a several page thread with information about the electrodissection procedure, insurance info, and before and after photos of some of that BB's members who have had it done. If you haven't already read that thread you might be interested... just go to the CTF BB General Discussions and search for "Removal of NF1 Tumors"

Thanks, I'll definitely check out that forum. Hopefully as more and more people with NF talk to their doctors about it, and more doctors become aware of the procedure, there will be more and more doctors willing to do the procedure. I'm anxious but nervous to meet with the plastic surgeon here next month. Hopefully shell say she can do it. Thats why I want to send her the info before my visit, because if shes a good doctor who really cares about helping patients and providing new services, then maybe shell take a little time and research the procedure. Hopefully she has all the right equipment too. The results I got with the 2 bumps my dermatologist did gives me hope.

Some of the tumors like on the face cant be removed because of what they are around and the damage they can cause if they try.As in my son he has nf1 and had a debulking surgery last June when he was 3 months old.Its on the side of his neck,cheek,behind the eye and ear,at the top of his spine and in the gaps of his brain.They removed some of it in his neck to try to help his breathing and eating bc he has a trach and g-tube but it grew back faster after they took it out.I do understand what you are saying about looking as "normal" as possible but sometimes you cant help but look different.
Im going to put in a link about a little boy who has nf1 since he was born and is 6yo now and goes to school.His tumor is exactly where Wills is and 2 cases to be even remotely similiar is rare.I thought it was sad bc of the way he looks bc ppl stare and make fun but I also found it encouraging bc he is still alive.They told us my son would live onky for 2 more months and that was in Oct and its Jan now and he is doing the best he ever has.Heres the link let me know what you think
http://www.fireangel.biz/v-Boy+battles+neurofibromatosis-DclO0HyrATU.

I know this is off topic but I use to live in Tampa

Some of the tumors like on the face cant be removed because of what they are around and the damage they can cause if they try.As in my son he has nf1 and had a debulking surgery last June when he was 3 months old.Its on the side of his neck,cheek,behind the eye and ear,at the top of his spine and in the gaps of his brain.They removed some of it in his neck to try to help his breathing and eating bc he has a trach and g-tube but it grew back faster after they took it out.I do understand what you are saying about looking as "normal" as possible but sometimes you cant help but look different.
Im going to put in a link about a little boy who has nf1 since he was born and is 6yo now and goes to school.His tumor is exactly where Wills is and 2 cases to be even remotely similiar is rare.I thought it was sad bc of the way he looks bc ppl stare and make fun but I also found it encouraging bc he is still alive.They told us my son would live onky for 2 more months and that was in Oct and its Jan now and he is doing the best he ever has.Heres the link let me know what you think
http://www.fireangel.biz/v-Boy+battles+neurofibromatosis-DclO0HyrATU.

I know this is off topic but I use to live in Tampa

Thank you for sharing the link. It makes me thankful that my NF has been mild up to this point, but it also makes me nervous about what the future could bring.

your welcome,try not to think about what tomorrow will bring bc it just stress you out more I know I think about that with my son and I try to stop myself.He has his 4month MRI coming up next month and Im kinda nervous

I need to get better at relaxing, I've had days where I can't think about anything else. With my luck, they'll find out that stress can cause NF bumps and then I'll really be in trouble. The more I read about the medical options and educate myself, the better I feel, but there's still a lot of unknown when it comes to NF.

When I first came to this site, I was really scared, as I watched more and more bumps appear every day, and then I heard someone talking about electro-desiccation and it gave me hope. Now I just need to find a local doctor, or go to New York or Texas. At least there's hope and that's better than nothing. LOL

I hope everything works out well with your son.

James, When you say that seeing Jibo's son makes you nervous for the future, what do you mean? If you don't have that type of facial tumor now you won't develop one. The regular neurofibromas are a different story. Again, I would suggest that you lurk around the CTF BB as there tends to be far more activity on that BB, lots of NF information, and a full archives that you can search for specific topics.

Jibo, Your son looks like a regular little go-getter, I bet you have your hands full!LOL He does look a bit familiar to me though and I've been wondering where I think I've seen him before? Maybe I am mistaken but could he have been in a news article some time back? Have you considered looking into the NF Photodynamic Therapy trial...I'm not sure what they would say about your son's case but I know in other non NF tumors PDT has been helpful with tumors around the throat. Did your Doctors not think any of the clinical trials would be worth trying? I will keep your little fella in my thoughts and prayers.

When I say it makes me nervous for the future, I just mean that I don't want any type of bumps or tumors and seeing stuff like that makes me realize how horrible NF can be.

When I look closely at the skin on my chest, it looks like goose bumps, and I know those are just hundreds of bumps waiting to grow. I know most of mine are just cosmetic, and I should feel kind of lucky for that, because a lot of people have ones that cause pain, but I just don't want any. I've gone 34 years without any changes in my NF, and now it's changing and it scares me.

Every day I try to educate myself more and more, but the more I learn, the more I realize I cant stand NF. Like most people with NF, I feel helpless. Like Im trapped in a body thats going bad and theres nothing I can do about it.

I may change my tune in a month when I go to the plastic suregeon. :) Hopefully I will. I have a raised area on my left cheak right above my chin and I can't figure out if it's because I've gained a little weight in my face lately, because I have a lot of bumps under the skin pushing that section of skin out, or maybe something worse.

I'll check out the site you mentioned. Thanks for the link.

James

I havent been here for a while, but today when I read this I had to respond. None of us asked to get this disease and I had talked with someone that had no history of NF in their family. And there are some people that can not have tumors removed not only due to cost BUT....they are in a place where it is difficult to remove, I have one between my brain & skull do I really want them taking a chance at making it worse? ummm that would be NO. My brother has had some removed from his eye and then some new ones grew and attached to the scar. so it is not always a wise thing to do.

I do want to give everyone a site to check out.

you can google: Reggie Bibbs (just ask Campaign)
he has a informational video out.

hope this helps

Linda