I wanted to share a breakthrough with you guys that can shed some light on our disoder and getting some surgery done: Here is an article and If you are in NY, you can call this number. If not, you can find a doctor that can perform this procedure:

At a recent Medical Symposium sponsored by the Children's Tumor Foundation, formerly known as the National Neurofibromatosis Foundations New York Regional Chapter, Dr. Hubert Weinberg, a plastic surgeon from Mount Sinai School of Medicine, talked about new surgical treatment options for neurofibromas. The process, known as Electro-desiccation, is used to treat large clusters, made up of hundreds of neurofibromas, in one sitting as opposed to having each neurofibroma removed with a scalpel. That is the great benefit of doing it in this manner as opposed to surgically excising each and every lesion with a scalpel. Dr. Weinberg said.

Click here to veiw Before & After Photos

Electro-desiccation is a process by which an electrical current is used to desiccate or dry out and kill the neurofibroma tissue. The doctor takes a cautery type knife with a thin point and runs a current through the neurofibroma, drying it out and killing it. This technique is much less invasive than the traditional surgical removal method.

Among its advantages, the electro-desiccation procedure is usually done on an outpatient or ambulatory basis. A patient comes in the morning and is home by the evening. The surgery is so fast that the physician can do the entire front or back surface of a patient in an hour or two. A local anesthetic can be used when removing cluster of tumors from a small area of the body, but a general anesthetic is needed for removals over a larger area of skin. The surgery is usually painless and because of the newer anesthesia the patient generally goes home within one or two hours. Very few patients actually require postoperative analgesic or pain medication. It typically does not hurt, but may itch so we will use Benadryl or some other medication for that, Dr. Weinberg said.

Click here to veiw Before & After Photos

Another benefit of the electro-desiccation is there is no need for sutures, a scab forms in the cauterized area and falls off in a few weeks revealing new skin. There is some scarring as with all scabs but that will fade away over time. There are rare instances where people will develop keloid (red raised scar) or hypertrophic (abnormally large) scars. There is a chance, as there is in all neurofibroma treatments, that the neurofibromas will return as the progress of the Neurofibromatosis will remain unchanged. Patients with few or larger neurofibromas will still need traditional surgical excision, but the efficiency of electro-desiccation, makes the speed of treatment for large cluster of neurofibromas much easier on the patient, in terms of pain and recovery time.

Dr. Weinberg also discussed insurance issues involved with this procedure. There is a need to make sure that the insurance company does not assume that the procedure is cosmetic. They [neurofibromas] are associated with pain and discomfort, and they have a certain malignant potential. They can get larger, they are disfiguring, Dr. Weinberg said. I think that has to be clear with the patient and the surgeon that this is not cosmetic surgery and should not fall in the realm of cosmetic surgery not covered by insurance. Dr. Weinberg pointed out that there are specific codes that the surgeon must use to have the procedure qualify for coverage. Patients should make sure that their doctor uses these codes when submitting paperwork to the patients insurance company.



Here is a website with some before and after pictures:

http://www.hweinbergplasticsurgery.com/gallery.html

I hope this makes somebody happy casue it gave me some hope. :)