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Scared and hopeful...

Like so many others, I am glad to have found this forum. For so long, I have felt alone. When I was 16 (I’m 46 now), I hurt my back jumping down some stairs. The first doctor told my father I was “trying to get attention.” To be fair, I am self-employed and have never had very good insurance- however, I cannot count the number of times I have been told by medical professionals “insurance won’t pay for an MRI, there is nothing wrong with you” or various versions of “it’s in your head,” “you just want drugs,” “it could not possibly hurt as bad as you say, try meditation,” etc.

It has been very frustrating. Eventually, I stopped trying to get doctors to listen to me about my pain (I call it a body migraine), numbness, tingling... and managed with multiple doses of Advil, smoking marijuana, etc... But, I started to wonder myself whether I was “imagining” the pain, or maybe I had a seriously low pain tolerance and was just a wimp. About 2-3 years ago, though, my symptoms -pain, numbness, and motor control issues (I, and everyone else in my life, has just always jokingly assumed I am just extremely clumsy and graceless)- began to increase exponentially.
In January 2013, I went to a specialist. I started physical therapy for posture problems and muscle and joint stiffness. He began multiple sessions of painful injections that were usually ineffective, but kept insisting I did not need an MRI as he KNEW it was my facet joints. 1 month ago, when I started experiencing additional issues, including incontinence, I decided to see another specialist. This one was amazed that I had never had an MRI. He personally called the insurance company to get authorization. This is the worst of what they found (I’ll mostly leave out the thoracic and lumbar issues):
Mild levoconvex cervical scoliosis, apex C4.
Grade I retrolisthes of C3 on C4.
A syrinx which extends from C2-T9 and is 4-6mm.
Facet degeneration and hypertrophy.
C4-C5 Large posterior disc bulge. Severe spinal stenosis. Severe right foraminal narrowing. Moderate left foraminal narrowing.
C5-C6 Posterior osteophyte. Mild spinal canal narrowing. Moderate bilateral neural foraminal narrowing.
C6-C7 Posterior disc osteophyte complex eccentric to the left with a left foraminal component. Mild spinal stenosis. Moderate left foraminal narrowing.

There’s more, but I think that’s enough. So, yes, this is all pretty new to me, remember, for 30 years, there was nothing wrong with me. Now they are practically shoving narcotics and nerve meds down my throat, so at least I am feeling slightly more comfortable.

Due to the extreme pain and other issues, I am being encouraged to move forward quickly. Surgery is my only option. We have had 2 consults. Both believe the syrinx is a result of the extreme compression on my spinal cord and will resolve after surgery. One recommendation is only to fuse C4-5 and release the spinal compression. I did not feel as though this surgeon and his staff were nearly as sympathetic to what I have endured, and the level of pain I deal with daily. They did not even discuss the radiculopathy with me, only the stenosis. The surgeon we feel most comfortable with (gut-based-and google-searched) is recommending the most extreme approach. He wants to do a C3-7 anterior and posterior cervical decompression and fusion with instrumentation and bone graft. He reasons that if I only decompress the spinal cord at 4-5, it is most likely that I will need additional surgeries to stabilize the cervical spine, and that I will not get as much potential for a reduction of my symptoms.

Naturally, I am freaked out, and I know there is a chance things may not get better (but will at least stop progressing). Reading some of the posts has helped me feel hopeful that I might get some relief. I have read multiple comments (here and elsewhere) that basically say, “Yes, I still hurt after surgery, but it is better now than it was before” so I believe I am making the right decision for my case. My surgery is scheduled for 8/12/14.

Anyone have any advice or tips? Especially about how to sleep with the darned collar on?


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