Thank you for the info about the Office of Patient Experiences. I will follow up. To answer your question, it is going on three years experiencing thoracic myelopathy.
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Again – just to be clear – from the beginning of this journey three and a half years ago – Marshfield Clinic, UW- Madison Hospital, Mayo Clinic – the term/label "cyst" was never used or identified to describe "the long narrow white line ALONG the spinal cord from mid-level to lower back." The term "lesion" was first used at UW-Madison and again at Mayo Clinic by nuerosurgeons and neurologists, with Dr. Flanagan as the Mayo "guru" of myelopathy. And again, I beg the question: where does one go to get a second opinion after the Mayo Clinic(#1 in the country as many of you have pointed out)?? It would seem to me that going anywhere else (with the eexception of NIH of unidentified diseases) would be a "step down" on the path to discovery of a potential cure or alleviation of further progressive symptoms.
From my first visit with a Mayo neurosurgeon and a Mayo neurologist, there was never any mention of a "cyst" (of any kind) from Day One – only a "lesion" on the spinal cord:"MRI of the thoracic spine evidence of a long segment of signal abnormality with gadolinium enhancement and residual long T2 hyperintensity within the thoracic cord."
Thanks to all of you for taking the time to weigh in on my situation. The risk of biopsy was worded as such: "We do not want to biopsy your spinal lesion because of a high risk of paralysis and/or permanent damage to your spinal cord." Which brings me back to my original question: Where, if anywhere, do I go for a second opinion for my current diagnosis of "thoracic myelopathy" with no known origin? As previously mentioned, would it be worth the proverbial college try to ascertain a diagnosis from another Mayo doctor in the neurology department at Rochester? I do agree with you in your assertion that traveling elsewhere physically will not make a difference. But something should be done/recommended to at least minimize – or keep at bay – my current symptoms associated with 24/7 numbness from my waist down. I am doing physical "therapy" (leg exercises/stretching, walking, stationary bike, treking poles walking, water exercise, etc.) at home every day with no discernable results. Again, as I have mentioned in earlier posts here, I have also tried MFR, CBD oils and creams, chair yoga, mindfulness, hemp gummies, and watched dozens of YouTube videos on "exercises for the mind and body" related to various forms of nueropathy/spinal problems. Nothing has brought relief and/or even minimized the numbing symptoms. This condition also has negatively affected my bladder and bowel function as well, and I have been to the Mayo urology department as well with (literally) no relief. I also was on a high dose of prednisone – both IV and oral form – with no improvement and terrible side effects. Any further medications related to suppression of the immune system has been ruled out in the midst of our current pandemic. I have not been on any medication related to my diagnosis since I was weened off the prednisone in January. It is as if I am watching myself doing all I can without any medical assistance to improve my situation. I am disappointed in Mayo from the standpoint of not finding ANY answers to a current medical issue that, if not treated in some way, shape, or form, will leave me with a future filled only with canes, walkers, and wheelchairs. However, I have watched people from all walks of life and from all over the world come through the doors of Mayo with the hope of finding answers. There are so many people, young and old, who have situations far worse than mine. They give me hope. They tell me now is not the time for a pity party. They tell me to keep on keeping on, no matter the level or degree of frustration. They tell me don't buy into the "we don't have many good options" philosophy. They tell me there is an answer to every question, a solution to every problem.
"A man's reach should exceed his grasp or what's a heaven for." (Robert Browning)
Thank you for your input. Yes, over the last two years I have had numerous blood workups, MRI's, spinal taps, anigiographs, body scans, including brain, and a dozen other tests. They all have ruled out Lymes, ALS, MS, Parkinson's, etc. My neurologist, who is a specialist in myelopathy at Mayo Clinic, has labeled me and my case as an anomaly, as he has never had a patient with my exact symptoms (no pain, but 24/7 numbness from lower back down to lower extremities, with a lesion on the spine. The lesion has not increased or decreased in size, but my symptoms have gotten worse over time: unsteady gait, balance issues, numbness and stiffness in thighs, knees, legs, and feet.) He did suggest the possibility of submitting my case to NIH of Unsolved Medical Conditions in Bethesda, MD. The NIH and the hospital rankings you listed above are all possibilities at this point, but travel, expenses, and insurance will have a large part to play in where I turn to next. Obviously, flying and car travel to these places from our hometown in northern Wisconsin presents a tremendous challenge. Throw in the ongoing pandemic we are all experiencing and you are (literally) risking your life trying to find an answer to a medical situation that has upended your life.
Is there such a thing as seeking a second opinion within the same department (neurology) at the Mayo Clinic in Rochester? Or will the doctors all support one another in my doctor's already established diagnosis?
After a year and a half of testing, including two Spinal Angiographs, my Mayo neurologists cannot pinpoint the origins of my thoracic myelopathy. He would be agreeable for me seeking a second opinion. I live in northern Wisconsin, and have been to the Marshfield Clinic and UW-Madison neurology departments for diagnosis/treatment. Both institutions referred me to the Mayo Clinic, neurology department, as they are recognized as one of the nation’s top neurology departments. Where does one go to seek a second opinion if the Mayo Clinic does not have an answer (“the place to go to find answers”)?