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brayimee (@brayimee)

Vertebral hemangiomas

Spine Health | Last Active: Aug 16, 2020 | Replies (12)

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@brayimee

@jenniferhunter Something to write in my book of things to check. My neurologist let me know loud and clear he was a brain doctor and that's it. Gave me a brain scan and said see you in 3 months 🙁 its such a defeated feeling.
It looks as though I will take a trip to WV to speak with a thoracic surgeon who deals with Slipping rib syndrome (SRS) if its a no, its another thing ruled out, if its a yes, I see if surgery will help. Nothing to lose.
Im going to Screencast you post to me and put it in my health file 🙂
Thank you for reaching out. Support is my biggest hope at this point.
Aimee x

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Replies to "@jenniferhunter Something to write in my book of things to check. My neurologist let me know..."

@brayimee Neurologists are like detectives who look for problems with the nerves or brain and they test nerve function. They are not surgeons. It sounds like your doctor is looking at the brain and waiting to see if something will happen. That's a good way to waste 3 months if your brain imaging is normal. The only doctors who examined me and understood the unusual symptoms I had with spinal cord compression were at Mayo. I was warned about incontinence by a doctor who did a spinal injection on me before I came to Mayo and he told me if that happened, it was an urgent situation and spine surgery to decompress my spinal cord would be needed ASAP. If your doctors don't understand that connection, move on. I did have retention as an earlier symptom and it would have progressed if I had let it. If you catch it early and have decompression surgery, they can fix it, but at some point nerves cannot recover. I did loose muscle in my arms and shoulders from the spinal cord compression and I got back about half of what I lost, so likely that is a permanent loss since it has been 4 years since spine surgery. I had pain during those 2 years that I was complying with every test the doctors wanted and waiting weeks for follow up appointments and it was a waste of time, and none of them would do surgery to help me because they didn't understand my symptoms and more importantly, they didn't want to risk their reputation on a possible bad outcome. They are scored by insurance companies on their success rates for procedures and that affects their earning potential. At Mayo, the patient comes first, not the doctor's ego. If I had come to Mayo first instead of wasting those years, I would be better off right now and probably still have all my muscle. Mayo is also very efficient. You may have to wait a few months to get in, but when you are seen they will get all exams and testing with results usually in about a week, and you will have an answer. If you want to consider Mayo, you should contact them now and apply. That costs nothing, and you can change you mind. They will want a copy of any imaging you have. If you do see a neurosurgeon at Mayo, they will order testing with a neurologist who they work with in the spine center as they do testing a bit differently. Your neurologist may be able to help you get in. You can request a specific surgeon like I did, or they will assign one for you. With the COVID lock down backlog, it may take longer too. Mayo also has thoracic surgeons if you wanted to get an opinion on SRS.

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