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Anyone have Schwannomatosis? (Neurofibromatosis type 1 (NF1)
Spine Health | Last Active: May 13, 2023 | Replies (43)Comment receiving replies
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.
Replies to "I am the pastor of a person with serious issue in which he is constantly gaining..."
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.
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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I’m happy to try and help. My wife and I have been there 15 times including two surgeries. Let me know.