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Anyone have Schwannomatosis? (Neurofibromatosis type 1 (NF1)

Posted by NFRunner @nfrunner, Nov 20, 2011

Would anyone like to share their experiences with Schwannomatosis? I run, walk, bike, and snowshoe race with the NF Endurance Team and the Children's Tumor Foundation to bring awareness and advocacy for Neurofibromatosis and Schwannomatosis. I'm passionate in my hope for a cure for NF. I'm a patient at the Mayo Clinic in Rochester, too.

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adronmoore | @adronmoore | May 12, 2023
In reply to @maryluise2 "Look NF1 the first symptom is that it Six or more café-au-lait spots on the skin..." + (show)
@maryluise2

Look NF1 the first symptom is that it Six or more café-au-lait spots on the skin and it also cause tumors and i had a brain tumor but i removed it when i was 18 years now i am 21. So I recommend that u go to a doctor asap because he will be more beneficial for u

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I've seen a lot of doctors . I'm now seeing a neurosurgeon and a plastic surgeon. I also just had EMG testing.

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joyajoe | @joyajoe | May 13, 2023
In reply to @hmichaelrich "I am the pastor of a person with serious issue in which he is constantly gaining..." + (show)
@hmichaelrich

I am the pastor of a person with serious issue in which he is constantly gaining new tumors inside his body. Last count was around 54. His current doctors basically treat him with surgery after surgery. He recently requested an appointment at Mayo Clinic- Jacksonville (6 hour drive). They said he should make application to Rochester. He truly needs a patient advocate that could walk him through logistics on getting to Minnesota more easily, possibilities for housing while he is there (he is basically indigent and lives on on a small disability payment), and other factors that might lead to better care.

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Please have him go online to the Neurofibromitosis Network. He may find the help he needs, or someone who can help him. I also live 7 hrs from Mayo in Jacksonville, am disabled and cannot make the trip.
Armed with info from the Network, he may take the info to a neurologist and find help. Many neurologists are aware of the disease, but never treated it. where I live, Neurologists only treat headaches, I found that strange,
armed with my previous diagnosis and information,I was able to get more help. I was ready to go back to NJ
for help, not anymore.

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maryluise2 | @maryluise2 | May 13, 2023
In reply to @adronmoore "I've seen a lot of doctors . I'm now seeing a neurosurgeon and a plastic surgeon...." + (show)
@adronmoore

I've seen a lot of doctors . I'm now seeing a neurosurgeon and a plastic surgeon. I also just had EMG testing.

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That is great i hope everything will go well and keep us by the updates

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