Hello, your post was shared with me because of NF and Schwannomatosis. I am familiar with the Mayo Clinic Rochester only. I see Dr. Robert J. Spinner, a neurosurgeon. My NF/Schwann is very mild and have had only a few tumors and a few surgeries. I know others with more serious cases like yours and I am sorry, I know from them it is very very hard. Dr. Spinner is one of their NF experts and also, with peripheral nerves. There is no cure for NF. There is no medication, unless a form of chemo, to shrink these tumors - to help with the fact that surgery is difficult, because they wrap so much into the nerves. I’ve heard the expression “haircut” in reference to tumors from friends who have had many surgeries. Because nerve damage is at great risk, quality surgery to reduce your tumors may be your best option. I learned from another NF friend that some chemo drugs can help with pain. I want to recall that the drug was Avastin, but you would need to inquire. Dr. Jashiri Blakely at John Hopkins is an expert in NF, Schwannomatosis and Avastin, also. For an opinion beyond general surgery/colon you could consider a good NF Clinic, NF speciality neurological surgeons for a second opinion. I wish the best for you, some choices, answers and less pain.

Jump to this post