Celebrating 35 Years

High Volume Electrodessication

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 a plastic surgeon that is now considering the technique on some neurofibromatosis type 1 patients. If you are interested please contact Neurofibromatosis Midwest at 630.945.3562.

 

UPDATE: The surgeon who agreed to perform this surgery is no longer at the University of Chicago and we have heard nothing further about him.

 

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Comments (36)

  • 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

    • 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 if you’d like to receive updates and more information.

      Thanks

      NF Midwest

  • 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.

  • 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.

  • 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).

    • 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

  • 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?

    • 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.

  • 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

    • 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.

  • I lost my plastic surgeon in dec. 2013. He was killed flying his plane. I have large plexiform on my left side that he had been debulking over the past few years. Of course it comes back. I’ve had to have other operations of the past 5 years and not been able to get back in before his accident. I also have small ones all over. I had found a great surgeon in Chicago. Dr McCay McKinnon. He has traveled to other countries helping other NF patients. I’m trying to find someone closer to home. If you live there ,check him our. If anyone knows somebody in Ga or the south, please let me know.
    Thanks

  • I’m a 53 years old Man with NF1 all over my torso,neck and face. For over 40 years or so I’ve been praying for help to have most if not all my NF’s removed.
    I’m having pain when I shower and when I shave I bleed. Not to mention the itching when I’m out coaching in the direct sunlight. I called Dr. Weisberg office in NY but I was informed that it would take several procedures (3or4) to remove them. I don’t have that kind of money $10,000 per visit because my insurance doesn’t cover it
    I don’t know where to turn to. I live in Miami Florida and no one down here knows of anyone doing the Electrodessication. I also e-mailed a Dr. Melmed in Dallas but I think the same issue with money is going to return. Can someone please assist me.
    God bless all of you and Thank you for your assistance.

    Coach

    • Thanks for your comment regarding your questions about electrodessication of NF fibromas. We can certainly understand your frustrations. Unfortunately, we really can’t be of much help. We can’t provide financial assistance and we also don’t cover the state of Florida so we aren’t aware of what resources may be in your area. First, I would make sure that your insurance doesn’t cover it. For the removal of fibromas, most insurances to cover it if it is coded correctly unless they are requiring you to go to a doctor nearby.

  • ARe you still only referring people to Dr. Tonsgard or is there anyone else in Chicago that deals with NF1? I’m looking for someone to also help with pain in my toes – not just high volume electrodissection .

  • I have NF1 and am looking for a doctor that can perform the Electrodessication on me. Does anyone know any doctors in the BC or Alberta region….I am so desperate to find someone that can help me. This would be the answer to my prayers.

  • I have nf1 and am looking to find a doctor to remove my lumps by using the Electrodessication procedure. Does anyone know of any doctors in Canada (British Columbia or Alberta) that can help me. This would be the answer to my prayers.

    • Anna, the Inspire board is a great place to answer this question, though I don’t believe there is anyone in your area that does “ED” the way that we recognize it through Dr. Weinberg and Dr. Melmed. Certainly all plastic surgeons and I believe dermatologist do “ED” because it is an instrument that they all use. You can find the Inspire board here http://www.nfmidwest.org/facebookgroup

    • REALLY CALL ANY PLASTIC SURGEON AND DERMATOLOGY. MY FIRST TIME I HAD A 3 HOUR SURGERY REMOVED 19 OF THEM MY BACK ARMS FACE LEGS, MY DERMATOLOGIST REMOVES EVERY MONTH WITH MY COPAY ONLY

      • Nina, We wouldn’t advise people to just call any dermatologist or plastic surgeon. Certainly many plastic surgeons can properly remove most cutaneous neurofibromas, but all may not know the difference between them and small plexiform neurofibromas. Dermatologist are especially not always appropriate for removing them. Of course, there may be some who have good experience, but often they don’t. NF is not a skin disorder but a neurological one. I know my daughter talked to a dermatologist once about a non-NF related skin issue and asked about the removal of cutaneous neurofibromas and they said they “shaved” them off. These should not be shave off. It’s important to surgically remove the whole thing.

  • I had ED surgery 02/13/17 and I am glad that I had it. They removed hundreds of my fibromas in a five hour session. Dr. Ordon, Dr. Chopra, and Dr. Funk in Beverly Hills, CA did my surgery for me.

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