It sounds like your journey with NF has been more difficult than I could even imagine experiencing. Obviously, you have great strength. I am not a medically trained person but I belong to 4 NF Foundations and through them I have learned a lot about all forms of NF. The Children's Tumor Foundation and NF Midwest are great information resources. 1993, at 39yrs, first surgery L2 - L4 and abdominal - NF barely known then. 2008, at 54yrs, second and third surgery - Schwannomatosis was a newly discovered form of NF. My genetic testing was through Mayo Clinic in Rochester. Insurance turned me down too, but Mayo Genetics Clinic and my neuro-surgeon re-applied and re-phrased the need for it 2X before getting approval. The first advice you will always hear is to find a clinic and doctors who are NF knowledgeable/experts. Some of the bigger NF Clinics have specialized pain centers. I love Mayo Clinic, this is where I have come since 1993. I have learned that NF is a genetic mutation, each form of NF a different mutation, there is no cure and no definitive way (yet) to keep tumors from recurring. Tumors grow on nerves, any nerves, anywhere there are nerves in the body. I can picture the tumor having a little root or foot to attach it to the nerve, like you described your surgeon saying. A tumor can be removed from the nerve and maybe it won't return in that exact same spot, but the genetic defect can cause another tumor to grow right next to it on the same nerve or a nearby nerve. My surgeries did not involve removing any of the nerve. Thankfully, my L2 - L4 area does not hurt me. I incurred some nerve damage in 1993, but it is not in a painful way. Wow, you spent 2 years to walk again? I still remember the feelings and those I will never forget - how stunned, how grateful I felt when I literally walked out of those surgeries. Sadly, pain is one of the criteria most associated with Schwannomatosis. I so hope your last surgery in January was successful and is not causing you more pain. I can't imagine being without my medical team and their support all these years! A connection, a bond, or just a friendship with them and caring for each other really makes a difference in helping to live with NF. I so hope you have found that too where you go for care. If you like this idea, there is a newly formed Facebook group called Adults with NF - Children's Tumor Foundation where only adults share their experiences with NF and support each other. My thoughts and hopes are with you. I wish I could be more helpful.

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