Seeking Second Opinion for Thoracic Myelopathy at Mayo Rochester

Hello, @upnort. I just got back from northern Wisconsin and it’s so beautiful in your area!

I read your post and wanted to see if I could offer any information that would help you. I see that this a good discussion, but I wanted to touch on your question about second opinions within the same department at Mayo Clinic. I actually have a friend that recently went through a health issue and needed a second opinion at Mayo Clinic within the same area, just as you described. She connected with Mayo Clinic’s Office of Patient Experience at 507-284-4988 (https://www.mayoclinic.org/about-mayo-clinic/patient-experience). They were able to help facilitate a new doctor that she moved forward with.

The Office of Patient Experience addresses concerns about your care experience at Mayo Clinic. You can call them or fill out the form on their page (link above). A Patient Experience Staff will contact you within 3 business days.

I hope this information helps. If you care to share, how long have you been experiencing thoracic myelopathy?

<p>After 19 months with the same neurologist at Rochester's Mayo Clinic, I was not seeing any improvement with my myelopathy. My symptoms, as I reported in earlier posts here...numbness from waist on down, onset of ED, balance issues, sporadic muscle twitches in both legs, uneven gait,tired heavy legs, along with bladder/bowel issues...have progressively become more pronounced and have obviously changed my once active lifestyle( I was an avid runner for 55 of my 70 years - I now struggle to walk for 30 minutes for daily exercise and stairs and steps have become my nemisis.) Numerous tests( over a dozen scans and MRI's MRA's, spinal taps, and blood draws, and two spinal artery angiograms, also reported in earlier posts here, have yielded no results as to the cause of a spinal lesion - biopsy of lesion was ruled out from the get-go as it is in the spine). Cases in which a cause cannot be identified are called idiopathic. Mayo's own website cites that if MRI's, blood tests, and lumbar punctures do not suggest a specific cause, the person is presumed to have idiopathic transverse myelitis. Many of these symptoms also mimic other neurological diseases. I have asked for "another set of eyes" (read "second opinion") on my case within the neurology department of the Rochester Mayo Clinic in the hope of shedding a new perspective and developing a new health care plan. As pointed out by one of you in one of the July posts here: "I wanted to touch on your question about second opinions within the same department at Mayo Clinic...a friend recently needed a second opinion at Mayo Clinic within the same area. She connected with Mayo Clinic's Office of Patient Experience. They were able to help facilitate a new doctor that she moved forward with." I did exactly that - I contacted the Office of Patient Experience. In summary, I was told that my case had been studied fully by a" highly selected team of many experts in neurolgy and in other relevant departments" at Mayo. For this reason, there would be no advantage for another neurologist at Mayo to meet with me. This response was devastating, disappointing, and humilating. No patient should have to feel bad about seeking a second opinion about his life-altering health condition. Mayo Clinic should be better than that: "The need of the patient comes first." - Mayo Clinic</p><p>Mayo is ranked #1 in neurology. Where does one go after #1 turns you down for "another set of eyes" to look at my case? I have been a cooperative patient for 19 months and have consented to take all tests presented to me in that time period. But time is of the essence. I am already afraid any nerve damage I am experiencing will be permanent, with further damage as time passes. Getting the correct treatment early is important, with treatment focusing on minimizing effects of the disease, modifying the course of the disease, and managing the symptoms of the disease.</p><p>I have begun the application process to UDN (Undiagnosed Diseases Network), but the process is time-consuming(acceptance takes 2-4 months) and the chances of being accepting into the program are slim (to date: 4,634 appilcations received, 371 appications under review, 1, 740 participants accepted, 1, 413 evaluated, 427 diagnosed). In the meantime, I feel abandoned by Mayo Clinic, specifically the neurology department, left alone with no current care plan or course of treatment for my worsening symptoms.<br />Should I contact Patient Experiences and ask them to reconsider? Should I seek out a patient advocate to help me seek an answer? Should I continue with my UDN appication and wait it out until November or December? Should I just suck it up and live with my disease as best as I can? Your thoughts, comments, suggestions, advice are always welcome.<br />Stay happy and healthy and safe.<br />upnort@upnort</p>

<p>After 19 months with the same neurologist at Rochester's Mayo Clinic, I was not seeing any improvement with my myelopathy. My symptoms, as I reported in earlier posts here...numbness from waist on down, onset of ED, balance issues, sporadic muscle twitches in both legs, uneven gait,tired heavy legs, along with bladder/bowel issues...have progressively become more pronounced and have obviously changed my once active lifestyle( I was an avid runner for 55 of my 70 years - I now struggle to walk for 30 minutes for daily exercise and stairs and steps have become my nemisis.) Numerous tests( over a dozen scans and MRI's MRA's, spinal taps, and blood draws, and two spinal artery angiograms, also reported in earlier posts here, have yielded no results as to the cause of a spinal lesion - biopsy of lesion was ruled out from the get-go as it is in the spine). Cases in which a cause cannot be identified are called idiopathic. Mayo's own website cites that if MRI's, blood tests, and lumbar punctures do not suggest a specific cause, the person is presumed to have idiopathic transverse myelitis. Many of these symptoms also mimic other neurological diseases. I have asked for "another set of eyes" (read "second opinion") on my case within the neurology department of the Rochester Mayo Clinic in the hope of shedding a new perspective and developing a new health care plan. As pointed out by one of you in one of the July posts here: "I wanted to touch on your question about second opinions within the same department at Mayo Clinic...a friend recently needed a second opinion at Mayo Clinic within the same area. She connected with Mayo Clinic's Office of Patient Experience. They were able to help facilitate a new doctor that she moved forward with." I did exactly that - I contacted the Office of Patient Experience. In summary, I was told that my case had been studied fully by a" highly selected team of many experts in neurolgy and in other relevant departments" at Mayo. For this reason, there would be no advantage for another neurologist at Mayo to meet with me. This response was devastating, disappointing, and humilating. No patient should have to feel bad about seeking a second opinion about his life-altering health condition. Mayo Clinic should be better than that: "The need of the patient comes first." - Mayo Clinic</p><p>Mayo is ranked #1 in neurology. Where does one go after #1 turns you down for "another set of eyes" to look at my case? I have been a cooperative patient for 19 months and have consented to take all tests presented to me in that time period. But time is of the essence. I am already afraid any nerve damage I am experiencing will be permanent, with further damage as time passes. Getting the correct treatment early is important, with treatment focusing on minimizing effects of the disease, modifying the course of the disease, and managing the symptoms of the disease.</p><p>I have begun the application process to UDN (Undiagnosed Diseases Network), but the process is time-consuming(acceptance takes 2-4 months) and the chances of being accepting into the program are slim (to date: 4,634 appilcations received, 371 appications under review, 1, 740 participants accepted, 1, 413 evaluated, 427 diagnosed). In the meantime, I feel abandoned by Mayo Clinic, specifically the neurology department, left alone with no current care plan or course of treatment for my worsening symptoms.<br />Should I contact Patient Experiences and ask them to reconsider? Should I seek out a patient advocate to help me seek an answer? Should I continue with my UDN appication and wait it out until November or December? Should I just suck it up and live with my disease as best as I can? Your thoughts, comments, suggestions, advice are always welcome.<br />Stay happy and healthy and safe.<br />upnort@upnort</p>

Thanks to both of you for your honest feedback. It's always reassuring to know there are other patiients out there with similar stories to tell. To your point of what care plan I was initially on: IV prednisone(8 weeks), oral prednisone (60 mg tabs for 4 months, gabapentin (4 weeks), physical therapy, myofacial release, (2 sessions), water aerobics/ yoga/ CBD oil/cream (6 weeks). The medicines gave me terrible side effects, and although I continue with the daily physical exercise, I have had no relief in my symptoms. I have not been on any medication since March 1. and currently have no specific care plan. My neuroligist said he has not seen a case with my exact symptoms in his years at Mayo Clinic - not exactly a confidence builder!.
Thanks again for taking the time to give me your input. I will both connect wtih the Office of Patient Experience and complete my UDN application.
Sincere regards.

<p>After 19 months with the same neurologist at Rochester's Mayo Clinic, I was not seeing any improvement with my myelopathy. My symptoms, as I reported in earlier posts here...numbness from waist on down, onset of ED, balance issues, sporadic muscle twitches in both legs, uneven gait,tired heavy legs, along with bladder/bowel issues...have progressively become more pronounced and have obviously changed my once active lifestyle( I was an avid runner for 55 of my 70 years - I now struggle to walk for 30 minutes for daily exercise and stairs and steps have become my nemisis.) Numerous tests( over a dozen scans and MRI's MRA's, spinal taps, and blood draws, and two spinal artery angiograms, also reported in earlier posts here, have yielded no results as to the cause of a spinal lesion - biopsy of lesion was ruled out from the get-go as it is in the spine). Cases in which a cause cannot be identified are called idiopathic. Mayo's own website cites that if MRI's, blood tests, and lumbar punctures do not suggest a specific cause, the person is presumed to have idiopathic transverse myelitis. Many of these symptoms also mimic other neurological diseases. I have asked for "another set of eyes" (read "second opinion") on my case within the neurology department of the Rochester Mayo Clinic in the hope of shedding a new perspective and developing a new health care plan. As pointed out by one of you in one of the July posts here: "I wanted to touch on your question about second opinions within the same department at Mayo Clinic...a friend recently needed a second opinion at Mayo Clinic within the same area. She connected with Mayo Clinic's Office of Patient Experience. They were able to help facilitate a new doctor that she moved forward with." I did exactly that - I contacted the Office of Patient Experience. In summary, I was told that my case had been studied fully by a" highly selected team of many experts in neurolgy and in other relevant departments" at Mayo. For this reason, there would be no advantage for another neurologist at Mayo to meet with me. This response was devastating, disappointing, and humilating. No patient should have to feel bad about seeking a second opinion about his life-altering health condition. Mayo Clinic should be better than that: "The need of the patient comes first." - Mayo Clinic</p><p>Mayo is ranked #1 in neurology. Where does one go after #1 turns you down for "another set of eyes" to look at my case? I have been a cooperative patient for 19 months and have consented to take all tests presented to me in that time period. But time is of the essence. I am already afraid any nerve damage I am experiencing will be permanent, with further damage as time passes. Getting the correct treatment early is important, with treatment focusing on minimizing effects of the disease, modifying the course of the disease, and managing the symptoms of the disease.</p><p>I have begun the application process to UDN (Undiagnosed Diseases Network), but the process is time-consuming(acceptance takes 2-4 months) and the chances of being accepting into the program are slim (to date: 4,634 appilcations received, 371 appications under review, 1, 740 participants accepted, 1, 413 evaluated, 427 diagnosed). In the meantime, I feel abandoned by Mayo Clinic, specifically the neurology department, left alone with no current care plan or course of treatment for my worsening symptoms.<br />Should I contact Patient Experiences and ask them to reconsider? Should I seek out a patient advocate to help me seek an answer? Should I continue with my UDN appication and wait it out until November or December? Should I just suck it up and live with my disease as best as I can? Your thoughts, comments, suggestions, advice are always welcome.<br />Stay happy and healthy and safe.<br />upnort@upnort</p>

@upnort, you said "My neuroligist said he has not seen a case with my exact symptoms in his years at Mayo Clinic – not exactly a confidence builder!"

This is precisely the type of comment that allows me to say with confidence that your neurologist consulted his colleagues. Mayo Clinic physicians are not afraid to admit when they don't know something because they know they are supported by others at the hospital and can draw on the experience and expertise of multiple colleagues. I don't want to belabor the point, but say this to reassure you that your neurologist is not working alone.

At the same time, it's important that he give you the confidence that you need. Be honest and milk the team approach. With the advantage of hindsight, you can certainly say something "Well Doc, that's not a great confidence booster. How can we work together to get some of my quality of life back? Who else have you consulted about my case? What else can be done? What can I do?"

@migizii which Mayo have you been going to? Many years ago, I went to Rochester Mayo neurology for chronic migraines-hoping for help, support and treatment. I did not receive this, but instead a brief consult (of all the materials I had brought). The doctor was arrogant, but knowledgable. I left devastated and returned to my local clinic with no help. The doctor I saw is still there. As I was thinking of trying again, but I made a formal complaint, I’m pretty sure I would not get accepted again as I would definitely want to see a different doctor in the department. I have found relief over the years, but regard Mayo like you do, as the best.....