Celebrating 35 Years

Insurance Coverage for the Removal of Neurofibromas

If you have cutaneous neurofibromas that are causing you any distress you CAN have them removed. They are ALMOST always covered by insurance, Medicare and Medicaid if the paperwork filed by the physician is properly coded and documented.

As of October 1, the United States has transitioned from ICD-9 (International Code of Diseases) to updated ICD-10 codes. This has made our previously published information on removing neurofibromas slightly incorrect. We have published new information along with the commonly used procedural codes (CPT Codes) here.

Understanding and having this information on hand may prevent, or solve insurance, headaches.


Comments (35)

  • I have neurofibromatosis mine came out after I got pregnant I want to have them removed because I stated to have pain with them. I need to know if I ask my primary physician for a referral to a dermatologist will my insurance will pay for the procedure

    • I’m so sorry Vanessa that we are just seeing this message. You should go to a plastic surgeon instead of a dermatologist. Insurance will usually cover it if the doctor codes it correctly.

  • Hi there,
    I have NF1 and I’m 26 now. I find out them since high school, but I didn’t pay attention to them till now. I’m an international student currently graduated from universitiy. I want to know is there some insurance can cover the future treatments. Thanks.

    Best Regards,


    • Insurance will often cover the removal of dermal neurofibromas if coded correctly, but not always.

        • Hello. Please see the attachment with the article that describes the different treatments and codes. Diana was referencing the insurance payment code, also called the CPT code. The codes are established by the AMA and are used by all physicians, clinics, hospitals, and every sort of treater in the US who would bill for their services to insurance, Medicare, and Medicaid. The descriptions attached to each code are very specific and if an incorrect code is used, it could result in reduced or even denied coverage for treatment. Please go back to the article for any further explanations and feel free to bring a copy to your doctor’s office to discuss the best code to use for coverage in your specific instance. Good luck!

  • Hi ,

    I have NF1 and now i am 35, i want to remove some of these and need more information like for which insurance plan i can opte to get full coverage.
    Also if you share some good referrals near Chicago, IL is good for me.

    • We don’t have any information on which insurance plans will cover it. We would hope most would (if coded correctly), but that is not always the case and any insurance that does, may suddenly stop covering it. This is something you should work out with your doctor. If you have an NF doctor you may ask them about who could remove them. Otherwise, in the Chicago area Dr. Jason Ko has begun removing many, but we don’t have a lot of information yet on how that is working out.

  • I have a growing neurofibroma on my face, that’s very sensitive. It started as the size of a mustard seed and now it really looks like the size of a large nipple. I live in Kentucky and I’m on Medicaid, specifically WellCare of Kentucky. How can I find out if it would cover at least part of the surgery if any?

    P.S I have them everywhere. Especially on my Areola and Nipples. Makes it hard to wear a bra.

    • Olivia, Do you have an “NF Doctor” that you can see? I know there is one in Lexington and someone in Louisville. If you can see an “NF doctor”, they should refer you to a plastic surgeon. If not, you may want to contact some plastic surgeons. I believe Medicare often covers removal, but I’m not sure of your Medicaid – the surgeon should be able to look into it. I certainly wouldn’t give up. Also, are you in our database? If you were you’d be receiving occasional emails. If not, you should sign up at http://www.nfmidwest.org/contact and we can send you a free packet of iNFo on NF.

  • I Know That There Isn’t A Cure For NF But I Was Wondering If There Was Anything That I Can Do That Would Temporarily Reduce The Size Or Control The Size Of Them ?

    • I’m sorry there is no concrete evidence of something reducing them. Some people say they see some reduction by taking turmeric, which is possible since it is an anti-inflammatory. Again, nothing is proven, but people are working on it. You should join the NF Community at http://www.tinyurl.com/nfhello and ask there. The group is small but it will grow with great questions like this. Plus people can share what they tried.

  • My daughter has NF1 and would like to have neurofibromas removed. Is there an experienced doctor in Jackson, Mississippi that does electrodesiccation? What about Atlanta Georgia?

    • Lori, I’m very sorry but NF Midwest does not cover Mississippi or Georgia. You could contact CTF.org or NFNetwork.org. The Faces of NF group on Facebook may also have some information.

    • I’m also hoping to get covered by Medicaid . I’m 19 and am hoping to get some removed. What is the name of your neurologist?

  • Is there any plastic surgeon that you know of that can remove neurofibromas with electrodesication or other methods to remove them? In the Kansas City area?

    • Ranee, Kansas City is slightly outside of our service area so we are not as familiar and it depends on what you are talking about. Electrodessication is actually a very common procedure/tool that many doctors use to remove skin tumors and other lesions. What you may be looking for is the high quantity removal of neurofibromas in the way Dr. Weinburg, Melmed, and Pannossian do it. There aren’t many who have dedicated themselves in that way or who have their experience, however there are many good plastic or dermatological surgeons who can remove fibromas. Some of them “shave” them off and don’t remove the whole thing. This may look better but they will most likely continue growing. If they remove the whole thing then there is a lot less chance they will come back though you will continue getting more. I suggest you talk to some surgeons and see if they have this knowledge.

  • Hello I have NF 1 and would like to have some remove form my face, and chest area. Do you have any doctors in the Buffalo New York area that can possibly remove them?

    • Dana, NF Northeast covers your area and would have much more information regarding the doctors there. We contacted them and someone will be reaching out to you.

  • Good Morning,
    I am in the Grand Rapids, MI area and wondering if there is a dermatologist who can remove my bigger NF bumps. I have a lot of them and would love it if I could get some removed. I have had some removed by my current dermatologist but was wondering if I should go to a plastic surgeon instead? Thank you! Emily

  • Hi I have a huge Neurofibroma, that’s hanging down my chest from my shoulder. I live in Philadelphia and have a hard time finding a NF doctor. My question is, do you know of any doctors in the Philadelphia area and if not could I just go to a plastic surgeon to have it removed?

    • Andrew,
      I would suggest reaching out to NF Northeast and they can help you locate a doctor. If it’s been a while since you’ve seen an NF specialist, I recommend that you start there and then they can refer you to a surgeon that is also familiar with NF and removing neurofibromas.
      Good luck and take care!

    • There is no definite way to reduce the fibromas other than having them removed. There are clinical trials that are just starting so their MAY be medicine in the future to help. There is some thinking that anti-inflammatories (SP?) like the spice turmeric might reduce them in size as it reduces inflammation, but nothing is proven.

    • What kind of help are you looking for? If you are an adult looking for a doctor who has more experience in NF you are very fortunate as there are several options in Chicago. You can see a list at http://www.nfmidwest.org/findadoctor. If you are looking to have cutaneous neurofibromas removed it is strongly advised that you see one of these experienced physicians first. They are however not surgeons and would not remove them. Rather they should be able advise you on removal. If you are confident that your cutaneous neurofibromas can be removed then you can see a good plastic surgeon. Several people have gone to Dr. Jason Ko out of Northwestern as he has been known to remove a lot at one time. Please, confer with a physician. This is not meant to replace medical advice.

  • Hi I live in Miami and would like to know of any doctor or physician i can see to get some neurofibromas removed, and will it be covered by Simply Medicaid ?

    • We don’t service the area of Florida and so we’re not familiar with the options there…and there isn’t a regional NF org in your area. You should try contacting the NF Network or Children’s Tumor Foundation. Also, you could contact a plastic surgeon or good dermatologist with surgical experience to see if you can’t find someone who has removed neurofibromas. Most (or many have). They can help figure out if Medicaid will cover it.

  • I have NF 1 I don’t have medical insurance too expensive, what’s the best cheapest medical insurance for people with NF1?

  • I’ve had NF1 since birth and have WellCare insurance. Is there a doctor in eastern KY that does removal.

    • We’re not currently aware of any specific doctor who is doing a lot of removals of cutaneous neurofibromas in Kentucky. However, a decent plastic surgeon may be able to help you. We’re not sure if your insurance would cover it. Many do and some don’t.

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