Seeking Second Opinion for Thoracic Myelopathy at Mayo Rochester

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.

@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?

@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

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.

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! :>)

@wisco50 So glad they got the sack. By the didn't mean to lead you to believe I'm a L.P.N. have plenty of experience was in the 10th of my class and on state boards worked in all areas of the hosp.,nursing home, home health helping my friend the RN start a home health agency and on call for her private duty . I worked in the O.R. as scrub nurse . My spotlight is on Mayo here . That's why I know so much more then one who just stays in one area . I also was charge nurse in several places. I'm in Calif now but did all this in Pa and the L.P.N. can do more there I understand then here . I'm glad you got to go on vacation in between . Good future ahead now if we can get rid of this virus we will be o.k.

No issues. Have worked with some excellent LPN’s and CNAs and sometimes encouraged them to go back to school and get paid more for their competence! So much of being good at any job is using common sense and I have worked with folks with advanced degrees who have no common sense! A mystery to me!

@upnort Have you consulted with the Regenerative Medicine researchers at Mayo? If I am understanding correctly, there is a white area that shows damage within your spinal cord itself on the MRI imaging of unknown cause and they have not definitively linked that to your symptoms?
https://www.mayo.edu/research/centers-programs/center-regenerative-medicine/focus-areas/neuroregeneration
https://www.mayo.edu/research/documents/neuroregenerative-medicine-booklet/doc-20092381

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?

Thanks for the tip re: Regenerative Medicine. And "yes" to your question relating cause & effect.