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raykemble (@ray666)

Balance, high blood pressure medications, and …

Neuropathy | Last Active: Jul 22, 2021 | Replies (26)

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@jenniferhunter

@ray666 Thank you. You are experiencing what I went through 5 years ago. It is reassuring to have an answer and be validated, but now with that information there are choices to be made.

I knew I would become disabled if I allowed my spine condition to worsen. My spinal cord compression was at C5/C6 with bone spurs (disc osteophyte complex) pressing into my spinal cord in the central canal. The critical factor is how fast the bone spurs are growing and if the compression is increasing. The herniated jelly like inner disc material causes inflammation when it spills out and that causes bone spur growth which can also happen at the nerve roots if it herniates that direction. I did not have that, just the spinal cord compression. On MRI,s I saw the bone spurs double in 9 months time while my symptoms got worse. PT can only go so far, and if you can maintain normal neck curvature, it helps. If muscle spasms start moving your vertebrae around with a compressed spinal cord, it just makes the central canal space smaller. I was having dizziness when muscle spasms twisted or tilted my vertebrae. I went through intermittent problems because my PT would realign my neck and the next muscles spasm brought on the symptoms from the compression again.

What I can tell you is find the very best surgeon that you can at a respected medical center. There are ratings for this on the US News and World Report website. Look up everything you can about a surgeon. Ask questions. Different surgeons have different choices for implants they use and it they do or don't do disc replacements. My surgery was at Mayo Rochester with Dr. Fogelson. Here is my story.
https://sharing.mayoclinic.org/2019/01/09/using-the-art-of-medicine-to-overcome-fear-of-surgery/
My experience was that this surgery was not as bad as I had imagined. On waking up from surgery, all the spine generated pain and leg weakness was gone, and I was left with the incision pain. After 6 weeks I felt pretty good and after 3 months, I could forget that I had had spine surgery. I also had a good physical therapist who also did myofascial release to treat the surgical scar tissue. Here is our discussion about MFR:
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/
There are lots of factors that play into surgical success including things like age, smoker or nonsmoker, other health conditions, etc. Also know that permanent damage of the spinal cord or paralysis is possible if you were to be in a traffic accident in this condition. If you do choose to have surgery, it's best to do that before permanent damage happens. Make sure to ask your surgeon about that time frame, but listen to your body. It is also good to get several opinions before making your decision. I chose a bone graft fusion without hardware. If you need to discuss surgery experience further, please reach out to me.

One thing that surgeons sometimes do is spinal injections of steroids to calm inflammation (which are not FDA approved for this use). That didn't help me much when I had one as a diagnostic test. It can indicate what would be resolved by surgery. I also had a new sharp electric stabbing pain in my hand for several weeks because of the epidural injection. Also know that surgeons do this to put off surgery, and that might be because they don't want to take on the risk of your case, so instead of offering a fix, they offer injections. Surgeons have ratings for the success of their procedures and they don't want to lower their statistics if a procedure doesn't go well. It's easier to have great ratings if you can cherry pick your cases. I ran into that myself before I came to Mayo and was refused by 5 local surgeons. At Mayo, the conversation was about fixing the problem and I was offered surgery right away. The other surgeons had not understood the connection of my symptoms to the imaging, and because it generated pain all over my body, they were afraid to touch it.

It's a big decision. Is there anything I can do to help you?

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Replies to "@ray666 Thank you. You are experiencing what I went through 5 years ago. It is reassuring..."

Dear Jennifer (@jenniferhunter),

Thank you a millionfold for your letter! Earlier, I started a 3-ring binder in which I’m saving everything related to my stenosis. Your letter is now in my binder. I’m also heading over in a few minutes to my partner’s house. She’s much concerned about my stenosis. I’ve made a second hardcopy of your letter to give to her.

I appreciate your willingness to help with this. I’ll let you know more as I learn more. This business is so new to me––less than 24 hours, although I’ve been trying (with so-so success) for almost a decade to assign a name to what’s been troubling me. As I believe I mentioned in my post, today, rather than feeling defeated by my diagnosis, I’m feeling somewhat triumphant: at last I’m able to ask the right questions of the right people. It’s a heady feeling!

Briefly (as I need to get over to my partner’s house): the report of my neck MRI concludes with “Impressions: (1) There are spondyloses, protrusions, and osteophytes in the cervical spine at the C3-4 through T1-2 level, (2) There is severe right foraminal stenosis at C4-5, (3) There is moderate canal and severe foraminal stenosis at C5-6, (4) There is severe bilateral foraminal and moderate canal stenosis at C6-7, (5) There is no cord lesion or compression, (6) There is moderate cerebellar atrophy.

I would imagine you can guess––this being so new to me––I barely know what any of this means!

And now I’d best get over to my partner’s house. Again, Jennifer, thank you for being there!

Ray

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