Seeking Second Opinion for Thoracic Myelopathy at Mayo Rochester

I'm in Boston at Mass General with very similar symptoms and the same MRI. After dozens of tests, and an angiogram to rule out an AVM, my neurologist's working diagnosis is insufficient blood flow in the spinal cord veins. Cause unknown. He doesn't offer any real treatment except good vascular hygiene and hope it stabilizes. Currently looking for any research/trials for this.

oldradioguy: I am still waiting for the UND-NIH to reopen their studies program before I am able to have an evaluation. Unfortunately for me - and the rest of the people "waiting in line" - this could take several months to a year. Mayo Clinic's neurology department has put me "on hold" for any further evaluation - even a televisit. I have since moved on to seek a virtual 2nd opinion at the Cleveland Clinic Nuerology Department. They have reviewed my medical records, including the past two years at Mayo, and have recommended I have a MRI done here locally to compare to the last one at Mayo (done 11 months ago). We are set up for a Zoom appointment to discuss the findings of this MRI (done this past week) and plan out possble options moving forward. I will keep you posted as to the outcome. In the meantime, good luck with your current situation.

So I assume I shouldn't be looking to Mayo Clinic for a 2nd opinion.

On the contrary, I would push to find all available resources at your disposal, inlcluding Mayo. Each case is different, and even my neurologist, whose expertise is myelopathy, admits there are just some cases that don't provide definitive answers or results. Another pair of eyes looking at your case might provide that light at the end of the tunnel. Go for it!

Just a thought....With the "residual long T2 hyperintensity within the thoracic cord" has anyone mentioned the possibility that this could indicate multiple sclerosis?

I had a hemorrhagic cyst at T4-T5 resulting from previous laminectomy and fusion surgery. It caused sciatica down my left leg. It was removed in Feb. 2019 but the sciatica has persisted and gotten worse. Anyone have any idea as to why and what can be done? Thank you.

"Anyone" being me after the first series of scans and tests. But my Mayo neurologist - a specialist in myelopathy - basically ruled out MS. Now, my (second opinion) Cleveland Clinic neurologist - a specialist in MS - has also ruled out MS. However, one of the prescription medicines he mentioned as part of a possible treatment plan is also used by MS patients.
Modern medicine is a constantly revolving door - sometimes with no clear exit.
And the beat goes on...

You are well read and savvy about test results. I had an MRI about 10 years ago that showed hyperintensities in my brain which no one investigated further nor even mentioned. A couple of years ago a neurology migraine specialist noted that and mentioned MS but didn't look into it at all. I have had an MRI recently and tried to ask about looking for the MS hyperintensities in the spinal cord but got nowhere with it. With all the pain and problems I have I have done so much "internet" research which just tics them off when you ask about anything you have found. We are supposed to be our own best advocates but that is an impossible mission. I wish you the best of luck in solving the mystery.

I thank you both for the kind words and a message of hope. You are correct regarding their disdain for self-advocacy, especially "suggestions" they may not have looked into or thought about. In the meantime, I have been using my treking poles to maneuver out and about without feeling self-conscious. Until, as you say, this mystery is solved, I will continue to leave the vanity plates off the car and only be concerned about the next turn in the road. Let us all stay "connected" - here's to advocacy!

Actually have an appointment there beginning of June. My neurologist here ordered another MRI before I go so they will have the very latest at hand. Interesting to see what happens.