Seeking Second Opinion for Thoracic Myelopathy at Mayo Rochester

Posted by upnort @upnort, Jul 1 10:41am

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”)?

@upnort I understand your frustration of not finding a cause and getting a proper diagnosis. That kind of happened to me too with cervical stenosis and mild myelopathy that did not show up on the MRI and 5 surgeons turned me down. It was after I found medical literature with cases like mine, that I had an answer, and I sent that to Mayo with a request to be seen there and I did have spine surgery that resolved the problem. You can also check hospital rankings to look for other specialists. Currently In the rankings of US News and World Report, for hospitals, Mayo is #1, Massachusetts General Hospital is #2, Johns Hopkins is #3, and Cleveland Clinic is #4. There is also Becker Spine Review website that has numerous lists and news about what is current in the spine specialty, and news about specific specialists and their research and interests. Your neurologist at Mayo may be able to give you names of specialists at other institutions for a second opinion. Doctors who go to spine conferences will meet others and get to know something about them. They are there watching case presentations and learning about new techniques and research.

Something else that comes to mind that is worth asking about is if there is an infectious or inflammatory disease rather than a physical problem that could be causing the symptoms, something like Lyme disease, ALS, or MS. Those are things that spine surgeons have to rule out when they are searching for a cause of symptoms. Has your neurologist done testing for something like that or referred you to a specialist?

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@jenniferhunter

@upnort I understand your frustration of not finding a cause and getting a proper diagnosis. That kind of happened to me too with cervical stenosis and mild myelopathy that did not show up on the MRI and 5 surgeons turned me down. It was after I found medical literature with cases like mine, that I had an answer, and I sent that to Mayo with a request to be seen there and I did have spine surgery that resolved the problem. You can also check hospital rankings to look for other specialists. Currently In the rankings of US News and World Report, for hospitals, Mayo is #1, Massachusetts General Hospital is #2, Johns Hopkins is #3, and Cleveland Clinic is #4. There is also Becker Spine Review website that has numerous lists and news about what is current in the spine specialty, and news about specific specialists and their research and interests. Your neurologist at Mayo may be able to give you names of specialists at other institutions for a second opinion. Doctors who go to spine conferences will meet others and get to know something about them. They are there watching case presentations and learning about new techniques and research.

Something else that comes to mind that is worth asking about is if there is an infectious or inflammatory disease rather than a physical problem that could be causing the symptoms, something like Lyme disease, ALS, or MS. Those are things that spine surgeons have to rule out when they are searching for a cause of symptoms. Has your neurologist done testing for something like that or referred you to a specialist?

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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?

Liked by Jennifer Hunter

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@upnort Is anyone looking at the lesion on the spine and if it is causing compression of the spinal cord and the symptoms of numbness? Have you considered talking to a neurosurgeon? You could do that at Mayo. Sometimes their opinions differ from a neurologist a bit. The neurologist I saw at Mayo didn't paint a bad picture of my spine because there was no spinal cord damage evident on the MRI, and he didn't really know what the neurosurgeon would say, but the neurosurgeon said that myelopathy doesn't always show up on an MRI and he offered surgery. Is the lesion something that could be operated on?

I had another thought. Are there any vascular or circulation problems to your legs? That could produce numbness, and also something like overly tight fascia or muscle in the pelvic area. Sometimes doctors don't think of that, but it is a physical problem that can compress nerves and blood vessels. Here is a link that can explain that type of issue. https://mskneurology.com/identify-treat-lumbar-plexus-compression-syndrome-lpcs/

We also have a Myofascial release discussion with lots of information. That could be something to try, and you don't need to know an exact cause before you start. An MFR expert therapist can feel with their hands the pathways of overly tight tissue. We sit a lot, and that can cause an overly tight pelvis that can mimic a low back problem. I myself have had some sciatic pain, that disappears when I get my pelvis leveled out and maintain that by building core strength. I do also have a bulging lumbar disc that will crack on rotation, and that is stabilized by core strength. Here is our MFR discussion. There is a provider search on the MFR website. The stiffness you report in your thighs and feet might support that kind of suggestion. I remember having muscle spasms because of my spinal cord compression. Basically, when you compress a nerve, it fires, and when it fires fast enough, it goes into a sustained contraction like a muscle spasm instead of a twitch response that happens at slower impulses with one twitch for every electric nerve impulse. https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

Liked by migizii

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@jenniferhunter

@upnort I understand your frustration of not finding a cause and getting a proper diagnosis. That kind of happened to me too with cervical stenosis and mild myelopathy that did not show up on the MRI and 5 surgeons turned me down. It was after I found medical literature with cases like mine, that I had an answer, and I sent that to Mayo with a request to be seen there and I did have spine surgery that resolved the problem. You can also check hospital rankings to look for other specialists. Currently In the rankings of US News and World Report, for hospitals, Mayo is #1, Massachusetts General Hospital is #2, Johns Hopkins is #3, and Cleveland Clinic is #4. There is also Becker Spine Review website that has numerous lists and news about what is current in the spine specialty, and news about specific specialists and their research and interests. Your neurologist at Mayo may be able to give you names of specialists at other institutions for a second opinion. Doctors who go to spine conferences will meet others and get to know something about them. They are there watching case presentations and learning about new techniques and research.

Something else that comes to mind that is worth asking about is if there is an infectious or inflammatory disease rather than a physical problem that could be causing the symptoms, something like Lyme disease, ALS, or MS. Those are things that spine surgeons have to rule out when they are searching for a cause of symptoms. Has your neurologist done testing for something like that or referred you to a specialist?

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I believe John Hopkins is #2 in the country for neurosurgery.

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@upnort

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?

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Does anyone know exactly what this lesion is? Solid? Cystic? Can it be biopsied? As a retired nurse this seems to be a question that has not been answered. That seems to be a big part of the mystery?!

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The lesion cannot be biopsied without the possibility of permanent damage to the spinal cord. Not sure about the definition of "solid" or "cystic" lesion.

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@upnort

The lesion cannot be biopsied without the possibility of permanent damage to the spinal cord. Not sure about the definition of "solid" or "cystic" lesion.

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Usually imaging can show whether it is solid or cystic, such is my understanding. A cyst usually has an outer wall and is filled with some sort of liquid/semi liquid. How it was explained to me when I was diagnosed with one at L4-5 years ago. I guess these are not unheard of. Ironically I worked as recovery (PACU) RN and occasionally would see patients listed for spinal surgery and removal synovial cyst and never gave it a second thought! My question to you is exactly how was the risk of biopsy worded? Asking as a nurse because any valid neurosurgeon and preoperative spinal surgery discussion will include possible risks of failure, including permanent paralysis, damage to cord, etc. They legally have to say that. I had to sign and initial documents acknowledging that before both my back and neck surgeries. (Even before some other surgeries!) NOT trying to diminish the seriousness of your situation – please understand! If Marshfield, UW and Mayo cannot provide any better answers, then I cannot think traveling elsewhere physically will make a difference. Obviously all your imaging can be seen remotely and your symptoms are well documented. What a frustrating and unfortunate circumstance. :<(

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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)

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@upnort I have been reading all post about this cyst I worked in the O.R if it's a synovial cyst it is possible the neurosurgeon can drain it ? Have you asked the Dr about this I'm also a nurse retired

Liked by migizii

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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."

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@lioness

@upnort I have been reading all post about this cyst I worked in the O.R if it's a synovial cyst it is possible the neurosurgeon can drain it ? Have you asked the Dr about this I'm also a nurse retired

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My synovial cyst took care of itself HA! by rupturing and bleeding into my spinal cord area. OMG, closest I have ever come to calling an ambulance (live by myself). Woke me yelling out of a sound sleep. I had surgery within days.

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@wisco50 Ouch that had to hurt . But glad it took care of itself , you will get some relief now let's hope it doesn't fill back up now . What did they do in surgery remove the sack?

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@upnort How about the Proton Beam? That is a highly targeted radiation that has been used on the brain. Is the cyst within the spinal cord, or on the surface of it? I don't know if this is a possibility or if anything can be done safely, but it came to my mind.
https://www.mayoclinic.org/departments-centers/proton-beam-therapy-program/sections/overview/ovc-20185491

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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.

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@lioness

@wisco50 Ouch that had to hurt . But glad it took care of itself , you will get some relief now let's hope it doesn't fill back up now . What did they do in surgery remove the sack?

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Yes, it hurt unbelievably – as a fellow RN, you will understand when I say the pain from my lower back into my R leg was such that I honestly wondered if I had a dissecting aneurysm! Calmed myself down enough to realize I had good pulses in the leg and eventually foot, once I could move enough to check them! OMG! I ended up having a TLIF surgery, with fixation and fusion at multiple levels. They did remove the cyst sac. I knew my back was in bad shape but my neck was bothering me more and ironically was scheduled for neck ACDF so they did my back instead since I “conveniently” had the OR slot, plans for my animals already made, etc. <G> Had the neck done 6 weeks later! Even managed to get in my week scheduled Caribbean vacation between surgeries, since I was a month postop back wise, allowed to be in ocean! :>)

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