Celebrating 35 Years

New Codes for Removing a High Quantity of Neurofibromas

Leading the Fight for Options in Treating Dermal Neurofibromas: NF Midwest gets new procedure codes approved.

For two years NF Midwest has been working closely with Dr. Taylor, a father of an adult with NF, to clarify what many call electrodessication or what should more accurately be called the electrosurgical removal of neurofibromas in high quantities under general anesthesia. Our immediate goals were to better define what is meant by “electrodessication” and to improve insurance coverage by getting new procedure codes that better delineate the difference between getting a few removed vs. many removed.

Our combined determination paid off and we are very excited to announce that the American Medical Association (AMA) approved two new temporary Current Procedural Terminology (CPT) Codes for the high quantity removal of neurofibromas through electrosurgery or “destruction”.

CPT codes are used to identify what medical service or procedure was performed. Not to be confused with ICD (International Classification of Diseases) codes which are used to identify the disease, complication or symptom that is (or are) being treated. Insurance companies need to know what procedure was used to determine payment. The CPT code provides this information.

The existing CPT codes do not differentiate well enough between the different techniques for removing neurofibromas or between removing several to removing hundreds. This can cause some confusion and issues with insurance coverage.

The new CPT codes are temporary and in effect until the end of 2022. Having these codes does not guarantee payment by insurance. In fact, it hasn’t been determined what monetary value insurance companies are going to put on these new codes. It is believed that insurance will at least pay at the same rate as they did previously.

Surgeons who remove neurofibromas in the way described by the codes will have to use the correct code. If thirty or more surgeons use the codes before they expire they may become permanent which we hope will greatly improve NF1 care.

We hope that these new CPT codes will help us to identify more surgeons who will perform “electrodessication”  and will lead to  better studies on the impact of removing many neurofibromas.

NF Midwest believes that enough isn’t being done, or studied, regarding the most common complication of neurofibromatosis type 1 and that treatment options for adults who are most often affected by a lot of neurofibromas need to be better explored.

If you’d like detailed information on the new codes, please use the link below. You will be required to provide your contact information. This is so that we can update you as needed. You will also be updated on other NF news, but you can unsubscribe at any time.


Comments (11)

  • I’ve had this done once in NYC but it was several years ago and with the cost being what it is it makes it very difficult to afford going back to repeat the procedure for new tumor growth. This isn’t simply a cosmetic surgery enhancement like “breast augmentation this can really just give us the the feeling of looking “normal” or like everyone else. It Caan give us the confidence to gout in public more and or maybe even allow for some to be employed where before they wouldn’t because of their appearance. This is vital to so many people and could change so many lives.

  • I’m 40yrs and have neurofibromatosis and so does most of my family and son, my sister has also died of the cancer version about 6yrs ago, my son had the version that effected His spine and had to have surgery, I’d like as much information as you can send me please,

  • The doctor has to know the correct CPT to use in order to make any removal of bumps covered. I had surgery done in New York City a few years ago and it was electric desiccation surgery. Several hundred bumps removed at once. It’s covered under the special code the CPT code. You have to make sure that the doctor or his secretary used the correct code. Some doctors don’t know this.

  • This is good news for people with NF. Hope I can find a doctor in Jamaica that does this. I would appreciate the opportunity to have them removed from my face, neck and chest.

  • i have n1i had some removed from body, but I suffer from chronic pain. I feel like someone is sticking me with hot needles and like I have been kicked. im hoping to find a Dr in my area that can help. now I have to take oxycodone just to ease the pain,

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