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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.

Interested in more discussions like this? Go to the Spine Health Support Group.

maryluise2 | @maryluise2 | Apr 10, 2023
In reply to @colleenyoung "Welcome, @maryluise2. I'm glad to read that the pilocytic astrocytoma tumor was non-cancerous. However, since it..." + (show)
@colleenyoung

Welcome, @maryluise2. I'm glad to read that the pilocytic astrocytoma tumor was non-cancerous. However, since it was not completely removed, I can see that you are very concerned that tumors may develop in the future because you have neurofibromatosis 1 (NF1). This genetic disorder that causes tumors to form on nerve tissue.

I moved your message to this existing discussion:
- Anyone have Schwannomatosis? (Neurofibromatosis type 1 (NF1) https://connect.mayoclinic.org/discussion/schwannomatosis-nf/

I did this so you can connect with others members like @nfrunner @painwarrior @jontan @lmp1 @joyajoe @pkindron @keikowacko @schwannjohn @kathp, who also have experience with neurofibromatosis.

Mary Luise, what does your medical team say about the risk of new tumors developing for you? How often do you get MRIs now?

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No i dont get any MRIs now but what symptoms i will have in order to know that something is happening

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maryluise2 | @maryluise2 | Apr 10, 2023
In reply to @meli58 "I have a granddaughter who is NF-1 (neurofibromatosis -1) and has had a cancerous nerve sheath..." + (show)
@meli58

<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>

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@meli58 i hope your granddaughter will pass through this and she will pass through this i trust that she is strong. I am diagnosed by NF1 and i had a brain tumor and it was removed but it was benign but my case was different although it was benign but it was so threatening for me and i survived. I believe that she will pass through this. I want to ask did she try chemotherapy? And about your daughter who have another 2 children with NF1 did you know the tumors that they have are benign or not? Are you considering any treatment for them also?

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Moderator
Colleen Young, Connect Director | @colleenyoung | Apr 10, 2023
In reply to @maryluise2 "No i dont get any MRIs now but what symptoms i will have in order to..." + (show)
@maryluise2

No i dont get any MRIs now but what symptoms i will have in order to know that something is happening

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What symptoms to look out for is a good question to ask your doctor. What is your follow-up schedule?

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maryluise2 | @maryluise2 | Apr 10, 2023

To be honest i stopped following up because i was scared to find something new. The fact that i have a disorder that is producing nerve tumors is scary for me and i am still young i am 21 and i don't want to go to hospitals again.

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adronmoore | @adronmoore | May 12, 2023

I have 25 or more tumors that I've found so far but brain mri was negative for acoustic neuroma. I had a very painful tumor excised from my pelvis. It came back as a schwannoma. Post surgery some of the other tumors started hurting and I have extreme numbness in left arm. Do I have NF-1 ?

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maryluise2 | @maryluise2 | May 12, 2023

I dont think that you have an NF1 because NF1 is a syndrome that you get when u are 3 years old and also the main symptoms is cafe oliat spots also i am not a doctor and i am just a patient but this is my experience with nf1 because i have it since i was 3 years old and sorry for spelling and grammar mistakes but u know the auto correct

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adronmoore | @adronmoore | May 12, 2023

I think it's Schwannomatosis. I'm 58 years old and have had noticeable tumors half of my life. The lumps weren't painful but have intense sparodic pain in adjacent areas. For the last 6 months or so I have had pain coming directly from tumors in my shoulders and both arms. Gabapentin provides some relief .

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joyajoe | @joyajoe | May 12, 2023
In reply to @adronmoore "I have 25 or more tumors that I've found so far but brain mri was negative..." + (show)
@adronmoore

I have 25 or more tumors that I've found so far but brain mri was negative for acoustic neuroma. I had a very painful tumor excised from my pelvis. It came back as a schwannoma. Post surgery some of the other tumors started hurting and I have extreme numbness in left arm. Do I have NF-1 ?

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More likely NF2, sounds likely. Please go to INSPIRE, ITS FOR THE NEUROFIBROMITOSIS DISEASES. It will help you figure out if you have it. I take Large doses of gabapentin, on fentanyl patches for years and oxycontin to deal with the pain. I stopped having the tumors removed after being disabled. Everyone is as nice as they are here. Good luck

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maryluise2 | @maryluise2 | May 12, 2023

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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maryluise2 | @maryluise2 | May 12, 2023

But also check maybe it is nf2 or it is Schwannomatosis

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