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Neurofibromatosis Midwest

DEDICATED TO SUPPORT, EDUCATION AND HOPE!

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.

 

13 Responses

January 8th, 2013 at 8:43 am

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

January 8th, 2013 at 8:53 am

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

January 13th, 2013 at 3:43 am

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.

January 13th, 2013 at 8:50 pm

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.

February 24th, 2013 at 3:48 pm

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).

February 25th, 2013 at 9:15 pm

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

August 5th, 2013 at 4:39 am

jenn

Hi Dana

I talked to you some months ago regarding going to seesee a doctor at U Of Chi and it didn’t work out. Their hours and says are restrictive and its difficult to get there.

Are there any other doctors in Chicago that do the ED treatment?

August 5th, 2013 at 11:20 am

NF Midwest

Jenn, there are no doctors in the are doing ED in the the way that Dr. Weinberg does – that I am aware of. However, electro-dessication is a technique that I believe all plastic surgeons are familiar with and use. So it you ask a plastic surgeon they may say they can do ED for fibromas. Also, some plastic surgeons cut the fibromas out. In other words, you COULD go to a good plastic surgeon. I would ask how often they have removed fibromas. The difference is that they may only do a few. For instance, my husband went to one P. Surgeon who said he could only remove 5 or so at a time, but he has used two other docs that remove 50 or so at a time. Dr. Weinberg with his ED technique does hundreds at a time. It is also important to be under the care of a geneticist or neurologist who is VERY familiar with NF before having some of the fibromas removed.

March 10th, 2014 at 4:43 pm

Jeni Simpson

Hello. I have NF 1 and have had numerous surgeries to have tumors removed. Is there anyone in the Midwest yet who does electrodessication? I have discussed the procedure with my plastic surgeon and he didn’t seemed to thrilled with the idea.

I also hear of a Dr. Melmed from Dallas, TX that will do it. Do you know anything about it

March 11th, 2014 at 11:37 am

NF Midwest

Plastic surgeons regularly do something called “electrodessication”, but my understanding is that isn’t the same or as aggressive as what Weinberg, Melmed and others are doing. No one is doing it in the Chicago area. We had a plastic surgeon at the University of Chicago that was going to start but then he left the area. We continue to look into it and work on it. We know that it is very important to NF adults.

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