Neurofibromatosis Midwest

42 Years of Care and Ensuring No One Fights Alone!

Neurofibromatosis Midwest

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Survey of Neurofibroma Removal

Posted By NF Midwest | On January 19th, 2015

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.

Comments (6)

Andrew Bresee says:

September 11, 2018 at 1:36 pm

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…

Reply
- Diana Haberkamp says:
  
  September 13, 2018 at 9:45 am
  
  We’re not doing the survey anymore. Are they plexiforms or dermal neurofibromas. You should see an NF doc and talk about your options.
  
  Reply
Hannah Grham says:

March 29, 2016 at 1:29 am

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!!!!!

Reply
Ingrid Parker says:

January 27, 2015 at 7:31 pm

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.

Reply
- NF Midwest says:
  
  January 28, 2015 at 8:37 am
  
  Ingrid, did you fill out the survey?
  
  Reply
Maxine Bakens says:

January 21, 2015 at 2:21 pm

What is all this about and is this available in Melbourne Australia

Reply