Anyone have Schwannomatosis? (Neurofibromatosis type 1 (NF1)

Hi lisa, I do not have tumors but the earlier post included pudendal nerve tumors in the ischiorectal fossa area which caught my attention. I wanted to know more for my issues. After visiting 5 colon and rectal surgeons with different conclusions imseeking answers. 2 doctors have mentioned to see a pain doctor and take meds forever. Dr. Kelly Scott with UTSW in Dallas told me I had bursitus and torn ligament in an area no doctor would try to fix. Scott heads up the pelvic floor. So frustrating.

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.

I’m happy to try and help. My wife and I have been there 15 times including two surgeries. Let me know.

We have been there many times as well, if I can help. You can find inexpensive lodging at the cooler times of the year. I am not sure what all housing Mayo might have. There are shuttles from Mayo, to and from virtually every hotel, motel every few hours. The itineraries are ready for you when you get there and there are many people to help direct you to the right place. They have contracts with most insurance including Medicare. They also have a financial assistance program, but I honestly don’t know anything about how it works. Going to Rochester was the best decision we ever made. If i can help answer questions for you please feel free to call on me.

@hmichaelrich, welcome to Connect. In addition to the gracious help offered to you by @tomewilson and @auntieoakley, I'd like to bring @nfrunner who lives with neurofibromatosis and is a long-time patient of Mayo Clinic, Rochester.

Additionally, I recommend that you or your friend reach out to Mayo Clinic Concierge Services – it is a free service that you can use prior and during your visit to help you find services, such as accommodations, transportation and things to do. You can contact them by email, phone, chat or in person during business hours:
* Phone: 507-538-8438
* Live Chat: https://www.mayoclinic.org/patient-visitor-guide
* Email: concierge@mayo.edu
* Web form: https://www.mayoclinic.org/patient-visitor-guide/minnesota/becoming-a-patient/concierge-travel-services

They may also be able to recommend an on-site patient advocate or volunteer who could accompany your friend while in Rochester if necessary.

Here is more information about Neurofibromatosis care at Mayo Clinic https://www.mayoclinic.org/diseases-conditions/neurofibromatosis/care-at-mayo-clinic/mac-20350498

Please let us know as questions come up during your planning.

This is a really nice, helpful response.

Does anyone have this disease? Have neuromas all over body, no balance, burning mouth, painful burning hands, feet,legs up to knees.
Bruises on arms and legs turning into weeping sores. I am 75 yrs old
Female background Turkish-Spanish. These.neuroma’s started appearing in my early 40’s, causing serious pain and difficulties by my
50’s..Live in West Palm Beach,Florida. Cannot find a neurologist in my
area, most only want Need help,any ideas?

Welcome, @joyajoe, might getting a second opinion at Mayo Clinic in Jacksonville, Florida be an option for you? If yes, you can learn more about requesting an appointment here: http://mayocl.in/1mtmR63

I am diagnosed by NF1 since i was a child but doctors didn't knew that so in 2015 i had an MRI on the brain so they saw a brain benign tumor and it was not supposed to grow but i was doing an MRI every now and then to see if there is any growth so in 2018 i got tried so much and i was vomiting all time, and severe headache, balance problems i want eating at all so i did a surgery called endoscopic third ventriculostomy. Also i was doing an mri every 3-6 months. Bur in 2020 the tumor had a significant growth so i had to remove it but it was not totally removed but my brain tumor was benign and not cancerous it was called Pilocytic Astroctoma. But i know that NF1 produce nerve tumurs, breast cancer so do you think a benign tumurbthat was not totally removed may come back again or can i devalop any type of tumor in future?

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?