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collierga (@collierga)

Severe spinal stenosis: Would you do surgery?

Spine Health | Last Active: Sep 2 12:21am | Replies (88)

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@jenniferhunter

@collierga Trust your gut. I got a lot of pressure and a scare from a local surgeon who was telling me I had significant spinal cord compression, and he was the one who owned a private surgical facility with 10 other doctors. I was going to do the surgery with him, but he backed out because I had leg pain and dizziness. He told me to go to a rehab doctor and fix that first, then I could come back to him for surgery. I couldn't fix anything because it was the spinal cord compression that was causing pain all over my body and the muscle spasms were causing the dizziness and no one understood that. I went to a rehab doctors office recommended by the surgeon, but they had mistakenly not actually scheduled my appointment. That is when I sought another opinion and never went back. This doctor sent quality of life surveys to me for 2 years when I had not had any contact with his office and by that time, my spine had already been repaired. No one in his office called to check with me, it was just the marketing communications sniffing for business.

My all over pain symptoms were misunderstood by 5 surgeons. It's called funicular or referred pain, and I found medical literature with cases like mine that said it was a rare presentation of symptoms. None of the 5 would help me, and I came to Mayo. It shouldn't feel like a sales pitch. It should be an honest conversation and you are part of the team that has come together for your benefit. Driving 2 hours to a teaching hospital would definitely be worth it if you find a great surgeon. I drove 5 hours to get to Mayo. I was driving 2 hours to the other surgeons who were not going to help anyway. When interviewing surgeons, ask for their specific success rate for the procedure they recommend and make sure later to look up their licenses and if there has been any actions against them. Also ask about what hardware is used and what complications can happen. Search for studies about the hardware from that manufacturer. I was lucky that I had only one damaged level, and I as able to have a fusion without hardware. I stayed in a neck brace 3 months. I worried about immune reactions, and the possibility of failure. There is a lab in Chicago, Orthopedic Analysis that does immune testing for surgical implants. Of course, you could develop an immune response at a later time. You also should pay attention to muscle loss of volume. If you see that even if you feel no pain, it can signal nerve damage. I don't know if you have had nerve conduction or EMG studies, but my experience was that in the nerves that were malfunctioning and related to my muscle loss, I didn't feel pain in those areas during that test. The other nerves hurt a lot because they were working. You might want to consult a neurologist in case this happens to you. I wanted to mention that because no pain doesn't always mean there is no damage. Find a surgeon you are interested in first because often they refer to specific neurologists they work with. I had to be retested by a neurologist when I came to Mayo and before my consult with the surgeon. If you have any other questions or concerns, please ask. I'm happy to help.

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Replies to "@collierga Trust your gut. I got a lot of pressure and a scare from a local..."

Thanks so much will keep you posted.
I have had a EMG,MRi and x rays

So happy for you. I tried very hard to get into Mayo. Sent reports and images. Kept fingers crossed. Just got a letter today telling me they would not take my case. A real downer.
I am going to be forced to either remain crippled and cope or throw the dice on one of the local doctors. Oh well.
I guess it was like the merry go rounds when I was a kid. There was a ring that you would try to get as you went up and down and round and round. I missed the ring.

Hello, I’m hoping you would be willing to guide me. I was a hair stylist for 30 yrs. I went on disability 10 years ago due to shoulder, neck and back pain. I was told I needed cervical spine surgery 10 years ago but I have heard so many awful stories that I’ve tried everything to put it off. I cannot stand or sit for any length of time before I need to recline (45 degree angle helps, sometimes flat on my back). The predominant pain is in my thoracic, mid back. I’ve been reading, watching utube etc and see that in severe cases (mine is severe bilateral neuroforaminal stenosis impinging on bilateral-6 nerve roots, amongst other things…) paralysis or other unwelcome things can occur if it isn’t repaired. I live outside of Jacksonville and am on Medicare with no supplemental insurance. I need help finding the right surgeon and supplemental insurance. My sister is near Rochester, MN’s Mayo so that may be a possibility too. I’d really appreciate any help you could offer. Thank you!

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