Setting up to have surgery ( any advise?)
Story of my search for help: cervical stenosis with myelopathy and Cervical Decompression
My search for why I was in “chronic pain” “weakness” and having weird “burning sensations” and “pins and needles”, practically my whole adult life!
I am now 57 years old, and seen a spine surgeon Thursday Sept. 29 2016. The very first time I seen him, he was able to say Equivalently, that my cervical spinal stenosis is causing my pain and symptoms and I need a myelogram ct scan for more information, which he set this up for next week, and I will then see him for the results the following week. But with the cat scan I had done even as far back as 2009 showed my spinal cord was being squeezed and had flattened out inside the spinal column. My Rheumatologist even mentioned this once. (That I had stenosis, Osteoarthritis, bone spurs, Why hadn’t she referred me to a specialist!) The spine Dr. brought up the scans that I had collected and brought to him to review. He showed slices and pictures, showing the cord was round then showing it was flattened out in the cervical spine where there was stenosis and showed me how the fluid, seen as white, how it ran free above the stenosis and Black where it barely had room to flow around the cord and stenosis area. and then showed the fluid white again lower in the spine. He also said, with out surgery my symptoms will keep getting worse, and could even progress to paralyze me.
Some back ground:
I seen a neurologist in 1990. I had MRIs and things done. He even brought up MS and inferred that I may have it. But mostly, he made me feel uncomfortable and wanted to give me a medicine for anxiety. ( Which infuriated me actually) Made it seem like he did not believe my concerns and problems. He was by far the worst Dr. I had ever seen! ( My main complaint at that time was burning sensations in my abdomen and legs. He acted like I had some really weird problem something that he had no idea what it could be. Like he had never heard anyone complain about burning sensations in the legs. I Did not question much, because I was naïve and shy and scared. I continued for 5 years I searched went to Dr.’s I knew something was not right, and could not understand how so many Dr.’s were not able to find the problem. In 1995 I was diagnosed with Systemic Lupus, but now, I am not so sure it was Lupus or was it this stenosis in my spinal column? Yes I have a very High positive ANA blood test and positive antiphospholipid antibodies. ( also known as APS) One important fact, This Spinal Surgeon said, I was born with stenosis of my neck area. This is called congenital. Maybe my body was just trying to free this blockage and attacking my own tissue. I do not know, but you could never convince me that this stenosis of the cervical spine has not been a huge if not all the cause of my years and years of pain and weird symptoms. Note: besides the pain in arms I had burning sensations in abdomen and legs and years and years of chronic Low back pain and other pains in wrists, elbows, shoulders and neck. So much so, that when lying flat, it was uncomfortable to lay on pillow some times. it hurt my neck. ( I am saying this so that if someone out there has same issue… maybe I will help some one find help. In it self I never gave it too much thought, just that it was one more weird thing about my body) but now I believe it was a warning sign that something in my neck was not right. another important note… I had both of my wrists and ulnar nerves worked on Carpal tunnel surgery and ulnar nerve ( elbow) surgery ( both right and left)… and even after these surgeries I said to husband and others I still am having problems with my arms. So, now I believe this should of been a red flag also… but how would I know, No one ever mentioned my neck stenosis really. After recent tests… I investigated.. I went back and got old reports and got the hospitals to put the records on a disc. which I then brought with me to this spinal Dr. This was key to allow him to see these records of test done as far back as 2009 that mentioned the cervical stenosis… No one told me I should do any thing….it was ignored by the Dr.’s At least that’s what it seems to me now! Reading the reports, I seen they had said, If I had trauma, a cat scan would be suggested. ( this was an X ray report. and it said I even had a shift in the bone. But my rheumatologist ignored that advise.) after reading it though, that’s when I decided to ask my PCP for my latest tests.
Please women, get your MRI, CT scan reports! read them and see just what they are not telling you! Because, they routinely do not tell you everything on these reports. The Dr. decides what’s important to tell you!
on May 24th of 2015, I stumbled and fell, I sprained my ankle and fell to the ground catching my self with my arms. This jarred my neck and head and I have been in terrible pain ever since. thinking I messed my arm up. (Oh, how wrong I was.) In Aug 2016 I finally decided to get to the bottom of this. I could no longer stand the pain any longer, I set out to find out what’s really wrong and try to resolve this. So I asked my Dr. to run tests. Bring us to Aug 2016. She ran X ray of shoulder and MRI of cervical, thoracic, and Lumbar spine. Long story short. she read results of tests, but frankly did not offer alternatives. Yes, it mentioned the stenosis but, did not say, you need to do this or that about it. over the time though. I had started to believe it was nerve pain. it was like my muscle would get extremely weak and just ache and ache, doing simple tasks. folding laundry, holding a phone, rolling out buck eye candies… the more I did the worse the pain. it would hurt so so bad! like a tooth ache! So I asked her to make an appointment to see a orthopedic Dr. so I asked her to make one for shoulder to rule it out and also a spine orthopedic Dr. Evidently the specialize. hand shoulder etc. and Back and Spine.
The shoulder Dr. did reflexes and said they were jumpy in my arms. He gave me a steroid shot in shoulder, but after talking with him. I could tell he also was thinking pinched nerve. But did the Steroid shot to rule it out. But if it helped then. that would be good. He seemed alarmed about the Jumpy reflexes So on to the Spine surgeon Orthopedic Dr. I went. Which brings me pretty much up to date. Honestly the last few days, I have been reflecting and it hurts and makes me mad that no one helped me find or seemed concerned about the one thing staring them in the eye and that was the Cervical Stenosis. Why had no one since 1990 said or set me to a specialist. All the times going to the Dr. complaining of the pain I am in! How could I have slipped through the cracks. Also makes me wonder how many more women are like me. and Is Fibromyalgia really cervical stenosis? ( not that I had ever had that diagnosis. But clearly I was experiencing nerve pain!
Will let you know what comes next after Oct 12th