I don't know what I have, but it's painful!

Posted by leahklein @leahklein, Feb 28, 2018

16+ physicians (most of them at Mayo Clinic - Rochester), 20+ conditions/ailments/diseases ruled out and countless therapies, procedures, injections and you name it have been tried. I'm disappointed to say the least. I grew up going to Mayo Clinic Rochester my whole life. I now live about 3.5 hours away out of state. I grew up thinking and up until recently still thought that Mayo Clinic was the place you go when where you've been doesn't have the answers. I've heard, "Sorry I can't help." more than I can count. The doctor's I've seen have ruled out their specialty problem and closed my case - not referring me elsewhere, not helping me think outside the box and certainly not following up to see how I'm doing. I literally am looking for a doctor who is a replica of Dr. House from the hit show...'House'. In 2007 I had cystic fibrous dysplasia in my left femur. Successfully removed & repairs by Dr. Shives. Dr. Sems inserted a nail for healing and stability. Typical recovery and rehab from that surgery. Fast forward 2013, pain begins in my knee during my regular running exercise. I was seen in 2013 by Dr. Cross who removed a broken distal screw previously holding my nail in place - failed attempt to remedy my knee pain. 2013-2014 saw a slow but steady increase in my knee pain from just daily walking with additional pain into my left interior thigh and groin. 2014 had a meniscus tear repair by Dr. Nwakama at SW MN Orthopedics. This again was an attempt to remedy my knee pain - fail. 2014-2016 increased intensity and frequency of pain with the solidification of a clear and unwavering pain path from left groin to behind left knee cap. You could take a string, tie it in my groin and tie it behind my knee cap and pluck it like a guitar - that is my pain path. 2016 due to my extensive history with Mayo Clinic, my WI primary care physician sent me back. Dr. Sutka, finding "nothing wrong" referred for intense physical therapy - stressing that I should find a physical therapist willing to be aggressive and think outside the box. January 2016 - July 2016 weekly physical therapy. This did not yield positive results as my pain was so intense that the majority of exercises could not be completed. Physical Therapy approaches tried: routine PT exercises for specified areas of pain, dry needling, meditation, ultra sound, massage therapy and mirror therapy. Seeing no results, my PT recommended I see a Pain Specialist. Sept. 2016 I had SI Joint Injection. Oct 2016 S Nerve Block Lumbar injection. Both no help. Dec. 14, 2016 Dr. Mangold and Dr. Sems (Mayo Clinic) found nothing wrong with the nail inserted almost 10 years prior and said they couldn't help. Dec. 15, 2016 Ortho consults with Dr. Kollitz and Dr. Mabry. Their thought was possible dysplasia of the hip and referred me to Dr. Trousdale who said any hint of dysplasia he was seeing on my x-ray was no cause for concern and said he could not help. Jan 6, 2017 left hip injection with Dr. Duck - no help. Jan 6, 2017 Pain consult with Dr. Pittelkow, requested i follow up with Dr. Mary Gutierrez. Feb 3, 2017 follow up with Dr. Gutierrez, recommended trial nerve block of left knee for possible ablation. March 21, 2017 left knee nerve block by Dr. Michael Carl of Neuroscience Group in Neenah, WI. No help. March 2017-June 2017 several attempts to contact Dr. Gutierrez's office to follow up on neuromodulation which was another recommendation of hers - to this day i have not had a response. February 2018 pain is at a constant 2 out of 10 with 7 out of 10 by noon through the night. I haven't taken one step with my left leg without pain in YEARS. I need help. I need an advocate at Mayo Clinic and a doctor who is willing to explore any and everything for an answer. I'm 29 years old and the thought of "pain management" (which has been 100% unsuccessful) is just not an option. ANY and ALL suggestions/advise welcome!!!!

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@terlato

I feel for you. I suffered for years with constant pain and the doctors never found anything wrong. They even told me to seek counseling. Finally I found a Neurologist that did listen. He did an EMG and said something wasn't right. He ordered genetic testing and I finally found out I have Hereditary Nerve Pressure Palsy, a very rare neurological disorder that most doctors never heard of. Pain management has helped with nerve blocks, injections and nerve alations. Most pain meds do not work because it is nerve pain. So I constantly use a TENS unit and heating pad and take a motrin. Which helps subside the pain. The only way to find out the source is getting genetically tested. I wish you the best and I truly know what you are going through.

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By any chance is the pain emanating just below your lower right rib cage? Just thinking just may be ACNES. Jeff

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@jgroudan

By any chance is the pain emanating just below your lower right rib cage? Just thinking just may be ACNES. Jeff

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Jeff,
yes I do have pain just below my right rib cage. No doctors have every told me that diagnosis: ACNES - Abdominal Cutaneous Nerve Entrapment Syndrome, but I will bring this to the attention of my GI and Neurology doctors. I'll do more research on this. Thanks.

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Go on YouTube. Find Carnett Test video and many videos on ACNES. Your doctors, all due respect, probably never heard of ACNES. Good luck. Jeff

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