High Volume Electrodessication
Posted on October 30th, 2012 by NF Midwest
NF Midwest has been working for some time now to find plastic surgeons in the Midwest who use the electrodessication technique pioneered by Dr. Weinberg on people with a lot of dermal fibromas. We are now pleased and excited to announce that the University of Chicago has plastic surgeons that are now considering the technique on some neurofibromatosis type 1 patients. If you are interested please contact Neurofibromatosis Midwest at 630.945.3562.
7 Responses
Becky L Lyon
I have a number NF’s on various areas all over my body. They are an eye sore for me. People look at me funny. Maybe I am being too sensitive. They didn’t start showing up until my late 30′s. As time goes on more and more are showing up. I am now 65. The ones on my arms are the ones I am sensitive about. Do you do any trial testing?
Thank you
Becky Lyon
NF Midwest
Becky,
We don’t do any testing or clinical work here. We are an organization that raises awareness, offers support and education, promotes research and works to improve clinical care. If you want to find clinical trials or opportunities to participate neurofibromatosis in research you may want to go to http://www.clinicaltrials.gov to search what is available. Also, insurance does usually cover the removal of fibromas. Here’s an article that might help http://www.nfmidwest.org/wp-content/uploads/2012/08/Insurance-Coverage-of-Fibroma-Removal.pdf. We do strongly suggest that you see a physician who is an expert in NF if you are not already doing so.
Also, you might find it helpful to talk to others with NF at the Inspire site that can be found here http://www.inspire.com/groups/neurofibromatosis-network/.
Please, send your email and location to info@nfmidwest.org if you’d like to receive updates and more information.
Thanks
NF Midwest
Lisa Campagna
I am 43 with NF1. Although it is mild, I still have tumors on my back that bother me. I have an appt on March 7th in Chicago with the plastic surgeon to discuss surgery to remove them. I am very excited and hopeful. A friend of mine, also with NF1 has an appt with the same surgeon the following week.
NF Midwest
Lisa,
We would love for you to call the office and give us your information. We’d like to try and stay in touch with anyone who is looking into this procedure at the University of Chicago. The office number is 630-945-3562. Ask for Diana.
Lisa Campagna
Diana,
I will call you on Monday. I am excited and hopeful.
jenn
Are there doctors in Chicago actually doing ED??? I’ve been to two clinics with doctor Tonsgard and left crying because he said there’s nothing they can do and even said ED is not an option (i had one procedure with Dr. Weinberg – would love to do another but travel/cost prehibative).
NF Midwest
Jenn,
I don’t know how long ago it was that you spoke with Dr. Tonsgard, but they are just starting to investigate ED (after a bit of pressure from us) further at the University of Chicago and have some patients that will be seen shortly for an initial review. Of course, I don’t know your situation and if there were other concerns that Dr. Tonsgard had. Please, give me a call at the office 630-945-3562 and we can discuss this more.
Diana
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