View Full Version : neurofibromatosis

09-24-2005, 10:38 PM
Hi, I was just wondering if anyone else here has NF1? I do, but I have a pretty mild case, basically my main problem so far is my scolisosis.

green m&m
11-22-2005, 12:22 AM
I'm replying real late.. but I do..

Mary Lou
11-22-2005, 06:09 AM

Sorry I missed this post! My 14 y.o. daughter also has NF (we think so, anyway-no DNA test to confirm at this point).

Mary Lou

green m&m
11-23-2005, 04:33 PM

Sorry I missed this post! My 14 y.o. daughter also has NF (we think so, anyway-no DNA test to confirm at this point).

Mary Lou

Don't know if you meant you haven't gotten her tested or not... there is a test out now (...recently w/in 1.5 yrs?) that is pretty accurate. I forgot the percentage but it's much more accurate than the previous test that had lots of misses.

Mary Lou
11-23-2005, 05:42 PM
Thank for the reply....we've checked into the testing, but Jamie doesn't want to be tested. Since there isn't a cure, she figures why go through that just to say yes, you have NF?

May I ask how severe your NF is? What if anything does your doctor do for you? Jamie's main concern right now is the cafe au latte spots. They seem to be spreading a lot lately. Is there a cream or anything you can put on them to make them less noticable? Since had her spinal fusion almost a year ago and these spots bother her more than her scar from surgery.

Mary Lou

green m&m
11-25-2005, 09:55 PM
Most people don't go through genetic testing to be diagonosed with NF, it's almost always diagonosed with clinical exams.

My NF isn't too noticeable where it's visible. The neurofibromas on my arms are only picked up by specialists.. most people think they are bug bites or allergies (even doctors/nurses...:rolleyes: ) I have tons of cafe au latte spots, bunch of superficial neurofibromas, a whole bunch under my skin and on some major prephrial nerves.. and few plexiform neurofibromas, the most extensive ones being on my scalp. .. and of course I have scoliosis.

So far I haven't gotten any treatment, I've just been followed with annual neuro/optomology/audiology exams. I'm planning to get some neurofibromas removed because they are causing pain.

There isn't any cream or things of that nature to fade CALs.. I've heard from people that tanning makes them less noticible, but I've also heard that tanning make it more noticiable.

Does your daugther have any other NF signs other than cafe au latte spots?

Mary Lou
11-26-2005, 07:18 AM
The only signs of NF that I know Jamie has is of course the cate au latte spots and her Scoliosis and Kyphosis at this point. Jamie doesn't have any reflexes in her knees. Is that common with NF? The neurologist who saw her over the summer wasn't that impressive, in fact, Jamie really didn't like him at all and he didn't answer that question for me.

Jamie's cafe au latte spots are mostly on her neck, back and some on her arms. She'll be disappointed to know that there isn't any cream to fade them.

Thanks for your help. Keep me posted on how things go for you.

Mary Lou

green m&m
11-27-2005, 10:31 PM
I've never heard/read any correlation on lack of knee reflexes with NF.

There is a directory of NF specialist on www.ctf.org the children's tumor foundation (formely the national neurofibromatosis foundation) Might be worth looking into if you want to taker her to another doctor. ..and if you aren't you should join the bulletin board at ctf, it's very active and informative.

Mary Lou
11-28-2005, 07:17 AM
Thanks for the website.

Mary Lou

12-04-2005, 02:32 AM
Hi Green M&M

I also have NF1 diagnosed at age 4. SEVERE Scoliosis with first spinal fusion at age 6. Unfortunately many other fusion surgeries after that.

As I read your post I saw myself in it. My NF1 hasn't impacted me much except with the Scoliosis and I believe learning difficulties. I have never seen a NF specialist Dr.'s were always only concerned with my Scoliosis issues.

Can you tell me what plexiform NF's are? What do they look like? I have a large growth on the back of my thigh, it feels and looks like the "chicken fat" that ladies get on there arms as they get older. But it looks like it has a blood source in it.

I also have small little "bumps" on my arms and legs and on my torso. Again like you said they look like bug bites or little pimples. One thing that caught my eye is your mention of the plexiforms being on your scalp. I am currently in a treatment regime for a scalp AVM, and have had 3 embolization procedures done.

I had quite a few large CAL's when I was a kid, but by the time I was about 20 they disappeared. But now as I have passed the big 40 I have noticed that they have returned, in the same spots and the same size, although I did notice a new one on my R breast about a year ago. Very strange. It isn't a matter or more or less sun exposure either, I'm a redhead and BURN so I don't spend a lot of time out in the sun.

I haven't been able to find a good descrip of the plexiform NF's at any of the NF sites so if you could describe one it would be really helpful.


green m&m
12-06-2005, 10:29 PM
Hi AuntSue,

I'm bad at describing things..but I'll try. My thoughts usually don't get expressed the way I want it.. ..and ADD makes me jump around so I can be hard to follow...:p

Typical neurofibromas are circumscribed -- they are usually circular and well with in boundary..

Plexiform neurofibromas can branch out, like tree roots and involves more cells than just the nerve cells. I think Plexi means roots in Greek.

What you are describing sounds like a plexi, but of course I'm no doctor.. so I can't say for sure. The plexiforms I have on the surface/skin look like just pink raised surface. They 'button hole' into the skin, meaning that there is a defect in the skin so you can 'push' into the top layer of the skin.. If any of your tumors 'button hole' you'll know what I mean.. you can also feel a border in the skin surrounding the tumor.

Anyway.. most of my plexiforms are just pink raised surface. I don't really feel anything under them.. There's one on my stomach that has branching tumors under the pink raised surface. The one on my scalp -- I can't say what color it is since I can't look at my own scalp but I've been told that it's pink. Under that one like the one on my stomach is a branching tumor... I'm not sure if I have one plexiform on my head or if it's multiple ones just close to eachother.. Something I'll address when I go see my specialist...

I think you should go see a specialist so you can have NF related question answered, and it's just nice to have someone that knows about your health needs.

here's a link to a plexiform neurofibroma.. looks simliar to ones I have..


I doubt that your AVM is caused by a neurofibroma plexi or not.. Hope that helps...

12-07-2005, 01:54 AM
Thanks for the reply. I think you did pretty well describing the PN's. I think that is probably what I have. I also found the "button hole" term interesting. I have a "thing" on the back of my left leg right at the panty line. It started out feeling like a small hole with definite edges around it, but it is covered with skin. Kinda like if your "innie" belly button was covered with a flap of skin. When I was younger it was flat, but over the years it has started to bulge out. It isn't large and the skin is flat and smooth.

Very strange, these little lumps, bumps and "holes". But I'm glad that there is someone else I can ask about these things.

I would like to go to an NF specialist, but transportation is an issue and the closest specialist is about a 2 hour drive from me. So, I really hate to ask friends/family members to drive me there and hang around all day while I have a Dr. appointment. But I guess I am going to need to do something eventually to be sure that there isn't something happening I don't know about.

One thing that really has me concerned is the HUGE number of x-rays I have had since I was 4 years old. We all know that x-ray exposure is a cumulative thing and I have certainly been "cumulating" lots of exposure. With the added complication of a tumor causing disease the impact of all those x-rays on any NF tumors I have is a bit worrisome.

07-15-2006, 05:18 PM
My Sons Both Have Nf1 And I Have Nf1.