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....

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hamby03 02/17/2009

I just got home from my plastic surgeon appointment and the doctor is familiar with the ED procedure and has done it before. She wants to start by doing it in a inconspicuous spot and if it looks ok, we'll do the face next. She's also going to remove some tumors.

Just got to see if insurance will pay for it, or if I'm going to have to pay for it and will keep everyone posted on how it goes in case others want to go to her too.

She's in Lakeland Florida about 40 miles north of Tampa

fabulous 02/18/2009

what is her name. I will like to go see her.

hamby03 02/19/2009

Here's her information.

http://www.watsonclinic.com/specialties/plasticSurgery.aspx#kazmier

fabulous 02/20/2009

Thanks... I plan on going to Texas next month for ED surger with Dr. Melmed. But this would be better b/c its closer. I hope she take insurance. Have a good day.

deleted_user 02/20/2009

all i can say is with NF tell them they are very painful. Sometimes they are painful but how can a insurance company say your not in pain. The doctors even will bring things up so the insurance can't refuse but every company has diffferent hoops that you have to jump through. good-luck though its nice to see people finding treatment

fabulous 02/22/2009

thanks hamby03 for the info. I made an appt and will be in lakeland next month for a consult

hamby03 02/22/2009

I'm going to be scheduling my procedure tomorrow, so hopefully I can get it in the next few weeks. Can't wait to see how things go.

Good luck fabulous, I hope she can help you.

fabulous 02/23/2009

are you going to have the ED surgery? Good luck

hamby03 03/24/2009

I had my ED procedure yesterday, I'll upload some pics soon. I only had a few bumps done, the first time to see how it would look. Hopefully I'll have more done soon.

I also had some removed with laser from my face.

fabulous 04/14/2009

I decided to not to go to that doctor and just go to the doctor in Texas. (Dr. Melmed) he specializes in the removal of NF using ED. And he removes thousands at a time. Glad to know everything went successfully. Looking forward to seeing the pics.

deleted_user 04/14/2009

"Dr. Melmed) he specializes in the removal of NF using ED. And he removes thousands at a time. "

Thousands at a time? Wow. That does not seem pos. I
would love to e-mail Dr Melmed and see how this is accomplished.
Do you not have to 'nurse' each scab with alcohol and 'clean' the
scab daily and keep them bandaged. Sorry if I sound ignorant
about this. I had 3-4 removed years ago and had to peel off the bandage, apply ointment, etc. every day for a week or so.

deleted_user 04/14/2009

I want to see the dr in NY I hear he too can remove them by the thousands in a sitting procedure... too bad he is charging over 5k but he too,does the ED and if I read his site correctly looks like he kills the nerve or something tht produces the bumps.In time I WILL have tht surgery rther it be NY or Texas... untill i see how the lady in Florida does ED and it is the same as texas and new yorks dr's I will look into it.

deleted_user 04/14/2009

Hamby I just checked the site u linked,i didnt see anything on Ed but thnx anyways...

deleted_user 02/10/2010

if u could give me the name of the doctor I would be interested in seeing him, I really appreciate any help you could give me

deleted_user 05/07/2010

Hamby03 I am new to this group. My mother as NF. I am curious how much did this cost? My mother only has an HMO so I am thinking they won't cover it. How did you find this doctor. She lives in Kissimmee. I would love to surprise her and take her to this doctor. But when I went on the web site I quickly got confused. Who should I ask for??
Also I see you are close to me. Do you know of any support groups locally in Orlando I can bring her to?? I so would love to help her!!

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