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Responsive doctors at Mayo

Neuropathy | Last Active: Aug 3, 2019 | Replies (24)

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@cwallen9

Thanks for your input. Can I ask what your problem is and how the Mayo Clinic doctors helped you? I have been to Cleveland Clinic, Penn State Hershey, and Johns Hopkins neurologists without any diagnosis or way forward (except for the usual gabapentin, etc. meds that don't really help). I would consider trying Mayo clinic if they had some way of helping. I live in Pennsylvania, so it is pretty far away.

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Replies to "Thanks for your input. Can I ask what your problem is and how the Mayo Clinic..."

@cwallen9 I was diagnosed with severe ulnar neuropathy in my right hand 9 yrs ago in my home state. Had surgery at that time. Ten months later I had surgery again to remove scar tissue. Each time I would improve and then plateau. No getting better and no getting worse. After another EMG, one of many I have had, it was found I had slight compression in my elbow. Began wearing a hard splint at night to keep it from getting worse. Well six weeks after wearing it, I get rear ended while at a stop sign. This caused numbness and tingling from my shoulder down to my finger tips. So two months later I had a nerve transposition in my elbow. Two years later I began losing the use of my thumb. My orthopedic hand dr was at a lost. He believed there maybe was something systemically wrong with me. He referred me to a top clinic in my home state. Of which they had no clue what was wrong with me. He then referred me to Mayo. After reviewing all my prior EMG results and the one I had at Mayo when I arrived, and the neurological evaluation done by the neurologist, along with a CT scan and MRI, I was finally diagnosed with Chiari Malformation and Syringomyelia. By the end of the week I was speaking with the neurosurgeon and planning for brain surgery. Which was a success. I don’t know how they do it, but the neurologist, that I was assigned, referred me to a specific surgeon and it was a perfect fit. By the time I was first seen at Mayo, my thumb was no longer useful. I was eventually planning to have a EIP Opponensplasty back in my home state. Mayo offered a second opinion. Both drs were in agreement of what needed to be done. I eventually had the surgery at Mayo as my home state dr did not ever perform surgery on someone who did not have normal tendons. The first time tears were shed at Mayo was tears of relief when they diagnosed me. Now when tears are shed there, they are tears of joy and gratefulness. I am truly blessed with all the wonderful care I have and continue to receive at Mayo. I consider my medical team at Mayo members of my family.