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Cervical myelopathy caused by herniated disc at C4-6 level
Spine Health | Last Active: Mar 3 4:49pm | Replies (29)Comment receiving replies
Today , I am feeling concerned at how fatigued I am and yet seems like walking the little that I do is weird and I feel like I am 90 yrs old . I feel like I have so many issues from different parts of my spine / I’m not sure what is causing eggs and my experience up until now is that no one wants to listen more then a minute and my problems are far too complex for that . It seems my medical care as far as this area goes has just been up to me ,begging and pleading for someone to help me . I am a NP and I think I am a good , informed patient and I fight hard to get help here. But it’s just not happening and maybe that is a blessing bc it has forced me to look elsewhere . And I decided it I was going elsewhere, I would go for the best. I lost my surgeon here about 6 months after my ACDF and PCDF - he had a rare medical program and had to retire . I was so sick when I had my surgeries , I feel I am a little unsure of what I had done . I had a rare infection previous to surgery and I could not focus enough to listen to details. My surgery was pushed back another year which just caused more time with my spinal cord being compressed .
I also though I had thoracic outlet syndrome , but that was ingnored previously by another surgeon .
So now I am very concerned about being able to have some quality of life and not living as I am now. My biggest fear is getting there and being told it’s just too far gone to do anything about it . I definitely need Drs who have the time to study me and my situation and look at my entire spine - I have problems all over !
Replies to "Today , I am feeling concerned at how fatigued I am and yet seems like walking..."
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@marycdickens01 Hi Mary. I understand your fears. I felt the same way because I was turned down by 5 local surgeons before I came to Mayo. Mayo offers appointments when they feel they can help, and they want to help you. I hope that can ease your mind a bit. I was pleading for help too before I came to Mayo, and maybe that helped me be accepted because I had already tried for 2 years to get help. You made the right decision.
With your prior cervical surgeries, you do need some experts to evaluate that and look for any new developments. You will be in good hands at Mayo. If you tell the neurologist that you are concerned about thoracic outlet syndrome, they will likely test you for it. They can listen to the pulse in your neck and have you turn your head. If that pulse is diminished by position of neck or arms, it could be TOS, and they would likely test you in the vascular lab. For me, they put tiny blood pressure cuffs on each of my fingers and manipulated my arm into different positions, and they measured the drop in blood pressure. It is hard to find a place that understands TOS and they do at Mayo which is one of my reasons for seeking care there.
I'm glad my Mayo spine surgeon is a lot younger than I am and he will be there if I need him again and he is a super nice guy and very down to earth. When I was trying to get local help unsuccessfully, I was also seeing a physical therapist who would realign my cervical spine and she used a Dolphin Neurostimulator to suppress pain signals with an electric current. That helped buy me some time when I was feeling hopeless. I also used a heated neck wrap and would lay down with that to try to relax the muscle spasms.
Walking ability can be affected by cervical spinal cord compression and I walked with a limp because of it, and then when my therapist realigned my neck better, I walked normally again. Muscle spasms were independently twisting my vertebrae or tilting them, and I had 2mm of backward slipping of C5 over C6. If you can work with a physical therapist now, it may help you function a little better while you wait for your consult.
I wish I could just hold you hand and help you through all of this. Do you have your hotel reservations yet? Mayo has many excellent surgeons. When I broke my ankle in 2020, I contacted my Mayo neurosurgeon and he gave me a referral to an orthopedic trauma surgeon and I returned to Mayo for those surgeries. That says a lot when a spine surgeon responds right away to help me with my ankle injury. They will listen to you. Everyone I saw at Mayo had the same approach of compassionate care. I had never had that before, and was impressed. Can you share the name of the neurosurgeon you will be seeing?