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Desperate, want to see the Mayo Clinic, but skeptical
Visiting Mayo Clinic | Last Active: Feb 9 5:48pm | Replies (11)Comment receiving replies
Hello @scornwell, I would like to add my welcome Connect along with @colleenyoung, @loribmt and others. I'm sorry to hear you haven't had any success finding help for the chronic pelvic pain. I do think Mayo Clinic Rochester would be an excellent choice for seeking help even though I'm a little biased. I've had several great experiences with their team approach to diagnosing and treating different conditions from small fiber peripheral neuropathy, lymphedema swelling in my legs, sleep apnea, and just a few months ago blood clots in the leg and one in the lungs. They all started with my primary care doc at a local family clinic and then referrals to a specialist at Mayo where I also saw different doctors when it was needed. Best example of the team work discipline used for me was when I had the swelling in my legs and was referred to a cardiologist at Rochester Mayo finally diagnosed with lymphedema. While he was scheduling tests during the examination he asked me if I snored a lot at night. When I responded my wife says I do, he set up an additional appointment with sleep medicine for additional testing and an overnight sleep study where I was diagnosed with obstructive sleep apnea. I'm sure there are many other members that can share their Mayo experience including one of my favorite Mayo patient stories from @jenniferhunter here - https://newsnetwork.mayoclinic.org/discussion/using-the-art-of-medicine-to-overcome-fear-of-surgery/.
Replies to "Hello @scornwell, I would like to add my welcome Connect along with @colleenyoung, @loribmt and others...."
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@scornwell Hello and welcome. John kindly shared my Mayo Clinic patient story about my spine surgery. Honestly, I did not know medicine could be as good as it is at Mayo. The other mentors in this discussion are all here because of the excellence of care that made a difference in their lives. I wasted 2 years chasing surgeons who didn't understand my case and wouldn't help me. We are all here volunteering and helping others because we know what is possible.
I have a terrific local physical therapist (not at Mayo) who has told me that pundental nerve issues can be tricky. I wanted to share with you this website that has several articles describing this and similar problems. It can be related to lumbar spine and pelvic alignment issues such as Lumbar Plexus Compression Syndrome. You might want to read these articles and perhaps this will give you a base for discussions with your providers.
https://mskneurology.com/category/low-back-pelvis/
I did come to Mayo after I found a diagnosis in medical literature that local surgeons completely missed, but I did find it because I was reading medical literature of a Mayo surgeon, and I knew I had found a surgeon who understood a case like mine. It turned out he was also kind, easy to talk to and he put me completely at ease, something I hadn't experienced with other surgeons. He really listened, and also consulted with other specialists about the other conditions I had, and he even received a call with results of testing from one of those other specialists while I was at my consultation! I didn't know that could happen with all my doctors on the same page at the same time, and figuring out everything in a couple of days.
I have on occasion felt a bit of a twinge of pundental nerve pain, but getting my back and pelvis aligned again resolves it. I also work on my core strength by riding my horse. My big lesson was learning to advocate for myself and learning everything I could about my condition so I could know I was on the right track and finding the right doctors of course. Coming to Mayo changed my life.