Anyone have Schwannomatosis? (Neurofibromatosis type 1 (NF1)

I'd like to know if I have schwannomatosis. I've had four tumors removed from my spine. The first one when I was 19 at S1, the second (S1) and third one (L5) when I was 26, and the fourth one when I was 43. My insurance will never pay for the test to get a definitive diagnosis. The second tumor was a recurrence of the first. It was believed they never fully removed the first. It grew through my sacrum and into my pelvis. It was the size of two large grapefruits and weighed 8 pounds. My pain was repeatedly ignored for seven years. That's why it was so big. My surgeon's had to cut the nerve roots at the spine at L5, S1 and S2 so that the tumors would not come back. It took two years before I could walk again. I just had my seventh spine operation in January 2016. My 21st surgery overall. I've been in pain since I was 16 (35 years now).

Welcome to Connect, @painwarrior. You have chosen your username wisely. I cannot image the pain you live with. I hope to connect you with other Connect member like @stephbusta as well as @normajean1 @nfrunner who started this thread quite a while back.

@painwarrior - why will your insurance not cover the cost to get a diagnosis?

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.

My insurance doesn't think it's medically necessary. It's been a couple of years since I requested the test. Maybe it's time to have my surgeon try again, especially since I just had surgery. Might be worth a try. If I could get the diagnosis, then maybe my doctors would understand why I'm in pain most of the time. I wish I could go to a Mayo Clinic, but it's just not feasible.

It might be worth a try, @painwarrior. How are you doing today?

I'm doing okay Colleen, thank you so much for asking. Feeling a little guilty. My husband has to go to Tennessee next month to visit his parents, his Mom has been ill recently. I had to tell him I'm not physically able to go with him. I had surgery January 12, and I'm still in some pain and feeling very weak, and I don't think I could handle travelling cross country, even if by air. I don't think he understands. He just told his parents that "Apparently growing bone is tiring, because she's tired all the time." It was my seventh spine surgery and my 21st overall. It's not like I'm in my thirties and able to bounce back right away. I'm 51, and spine surgery seems to get harder and harder.

<p>I have a granddaughter who is NF-1 (neurofibromatosis -1) and has had a cancerous nerve sheath tumor in the past. It was removed, but she now has another larger one. She was given an experimental drug, but it failed to help her, and she now has cancerous lesions in her lungs as well. I would like to hear from anyone who also has a family member in this condition, and also to find support for my daughter who is devastated--she also has two other NF-1 children with tumors, and worries that she faces losing them all. Thank you.</p>

Welcome to Connect, @meli58.
I'd like to connect you with @nfrunner @painwarrior who live with NF-1, as well as @stephbusta and @jontan who's children have NF-1. I can only imagine how devastated and worried your daughter must be, and you, too.
I'm also going to tag @mrsjoanie @ihatediabetes @lparr00 and @fernandavidigal on your message. While their children don't have neurofibromatosis, they know first hand what it is like to parent children with rare conditions.

Meli, do you live close to your daughter?

No, she lives in Michigan, but we are in constant contact. Thank you for your help.

Meli,
I'm so sorry your daughter has to go through this. I have Schwannomatosis, and my tumors have all been on the nerve roots at L4, L5, S1, and S2. Has she been to Mayo or any of the NF clinics?