thoracic myelopathy

Posted by upnort @upnort, May 8 12:28pm

I am going on 20 months with thoracic myelopathy (diagnosed at the Mayo Clinic) with no relief in sight. Extreme numbness from toes-feet-legs, knees, thighs, hips, pelvis, buttocks, lower back is 24/7. There is no pain with this condition, only the constant numbness/tingling/lower extremities stiffness with spasms-twitching in my right leg while sitting for long periods of time. I have been a life-long runner, but that had to stop when this condition reared its ugly head. Inflammation is visible in ankles and knees, accounting for the stiffness and reduced mobility when walking and exercising and standing or sitting for long periods of time. My balance continues to be off, with a sometimes unsteady gait. These symptoms continue to get worse. Mayo Clinic cannot find the source of the spinal lesion nor can they – up to this point- find a solution to the problem, or even a way to minimize or slow the progression of the disease. Six month regimen of Intraveneous and oral prednisone plus a few other meds did nothing to abate the symptoms. The side effects of these meds were terrible and not worth the risk to continue. I have had dozens of blood workups and tests, two spinal taps, an artery angiogram, and scans and imaging that are now into the double digit count. I have been med-free since February, but my symptoms have slowly progressed. I turned 70 in February, and I thought it might be time to change directions with a different approach. Dr. Flanagan (Mayo neurology) and I agreed to forego more testing for the time being and try a more homeopathic agenda, which I have done since February: CBD oil/CBD inflammation cream, myofascial release, water aerobics, chair yoga, mindfulness/meditation, turmeric/anti-inflammatory supplements, compression stockings, hot/cold packs. Unfortunately, these yielded no positive results. Throughout all of this, I have been faithful to my daily exercise routine of 20 minute stretching/strengthening lower extremities and 30-40 minute aerobic exercise (treadmill, bike, walking, hiking w/trekking poles). I have to push myself more now than ever before, and I feel extremely tired and weak after these sessions rather than invigorated or attaining that feeling of well being ("runners high"). I feel I am now at a crossroads. I am scheduled for another round of tests next week followed by a visit with Dr. Flanagan with the hope of coming up with yet another health care plan for this diagnosis. Honestly, this scenerio is getting more difficult to endure without some hope that Mayo will "help me find the answers." Any feedback would be greatly appreciated. Thanks for listening.

Hello @upnort. Thank you for sharing your healthcare journey since your diagnosis of thoracic myelopathy. I was happy to read you are not in any pain, but the rest of the symptoms you described as part of the condition must be very challenging to live with.

I am including @irene5 and @donfeld as they have been part of spine health discussions and may be able to share some thoughts or experiences.
I was happy to read that you and your doctor have tried various things, but sad that you mentioned they did not yield positive results. I hope that your upcoming appointment will give you more answers and a clear pathway. Other than Dr. Flanagan, are there any other specialists at Mayo Clinic you have seen?

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@kellyhahn1

Hello @upnort. Thank you for sharing your healthcare journey since your diagnosis of thoracic myelopathy. I was happy to read you are not in any pain, but the rest of the symptoms you described as part of the condition must be very challenging to live with.

I am including @irene5 and @donfeld as they have been part of spine health discussions and may be able to share some thoughts or experiences.
I was happy to read that you and your doctor have tried various things, but sad that you mentioned they did not yield positive results. I hope that your upcoming appointment will give you more answers and a clear pathway. Other than Dr. Flanagan, are there any other specialists at Mayo Clinic you have seen?

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Dr. Rozen it's a very good neurologist I in fact he has similar pain problems so he's good to relate what we're going through. He's the only one that helped me really at the Mayo. I wish you all the best and thank you

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@kellyhahn1

Hello @upnort. Thank you for sharing your healthcare journey since your diagnosis of thoracic myelopathy. I was happy to read you are not in any pain, but the rest of the symptoms you described as part of the condition must be very challenging to live with.

I am including @irene5 and @donfeld as they have been part of spine health discussions and may be able to share some thoughts or experiences.
I was happy to read that you and your doctor have tried various things, but sad that you mentioned they did not yield positive results. I hope that your upcoming appointment will give you more answers and a clear pathway. Other than Dr. Flanagan, are there any other specialists at Mayo Clinic you have seen?

Jump to this post

It might be spelled Rosen

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How has Dr. Rosen helped you with your situation?

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