Celebrating 35 Years

Survey of Neurofibroma Removal

We are conducting an important survey of patients with NF1 about electrosurgical removal of neurofibromas (dermal (cutaneous)) and/or subcutaneous tumors in high quantities over large areas—“ED” (Electrodessication) is a sub-type of electrosurgery.

If you have a lot of neurofibromas, let your concerns about dermal (cutaneous) and subcutaneous neurofibromas, your need for access to surgery, and your access for insurance coverage for high quantity removal of NF tumors over large areas be known by taking the survey below.

The results of this survey will be used to attempt to gain support for new procedural coding, proper insurance coverage, and to increase awareness of the current level of need of patients with neurofibromatosis among tertiary care institutions, NF clinics, departments of plastic surgery, departments of dermatology, plastic surgeons, dermatologists, and other physicians.

 

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Comments (6)

  • I have had 1000nds of tumors removed by Dr Ed Melmed in Dallas Texas. He is great. I am real happy with the result. Just one thing, where the tumors have been removed i have after a few Years white spots. but that is nothing compared to the ugly bumps. I will find before and after photos if You are interested. He has removed tumors from most of my body.

  • I hate having this it makes me cry because no one wants or loves me. I hate that i have them everywhere and people talk so bad about me please help me please help me remove these please!!!!!

  • Is this still on-going?

    I have many plexiform neurofibromas which cause a lot of pain. Hoping to get them removed and stop the chronic pain…

    • We’re not doing the survey anymore. Are they plexiforms or dermal neurofibromas. You should see an NF doc and talk about your options.

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