In October 2013, I had an appointment with the neurosurgeon's medical assistant. I filled out a load of paperwork, we discussed my history with scoliosis and my problems I was currently dealing with. I must have filled out at least 3 of these little charts where you mark where and what kind of pain you have. I pretty much just covered the entire neck, back, shoulders, hips, and down my right arm and leg with x's and little dashes.
Before I could see the neurosurgeon I had to get an MRI. My MRI lasted 1 hour and 45 minutes. It was tough even while I lay there with my eyes closed, listening to classical music, praying to relax. I am way too claustrophobic to be in there that long. They even sent me to the "larger" one at the hospital. I can't imagine what the small one would be like. They had to do three scans total to include the cervical, thoracic and lumbar regions of my back. It really shouldn't have taken that long but the tech said my spine was so twisted they had to do extra scans. After the first two I had to press the panic button. Being in pain all the time I really can't hold still for very long and feeling like I couldn't breathe didn't help. I just had to sit up, breathe, stretch and move then I was good to lay down for the last scan.
Finally I had an appointment with the neurosurgeon. He looked at my x-rays and MRI's and said he didn't want to do surgery yet. According to him I am too young, healthy, don't have enough damage to my discs (just one joint with arthritis in my neck), and no pinched nerves. This was all very crazy and backward to me. Why would I want to wait until I was damaged? Why wait until I am older and recovery is slower and more difficult? Obviously my scoliosis is causing me pain, it is progressing, it qualifies as severe (in regards to the degree of curvature). I really should be a prime candidate for surgery and being healthy is an added bonus!
Before considering surgery he wanted to look into all the non-surgical options. First, I saw a pain management doctor. He told me he couldn't help me. He thought all my pain was coming from my arthritic joint in my neck. He said I was too young to start burning nerves around the arthritis (which is how he would normally treat it). Given all my allergy problems with pain meds, I was very hopeful that I would go in, get an injection, and be pain free for 6 months. Sounds great doesn't it?! Instead I felt like hope for freedom from pain was ripped from me. I began to cry. I could not control my emotions. It was awful! The doctor was extremely kind and sympathetic but could offer me no help. Next, I was sent to physical therapy. My insurance would not cover a PT who was experienced with scoliosis and my referring PT would not back me up to appeal the insurance's decision. I went to a different PT who really didn't have much experience with scoliosis. It was all a little frustrating for both of us. Most things we tried either caused me so much pain afterward that I felt like throwing up or did absolutely nothing to help relieve pain. My shoulder did loosen up a bit but my pain levels never decreased. Finally after a couple months the PT asked me if I really wanted to keep coming back because it didn't seem to be doing much to help me. Another hope lost.
About this time I received notice from my surgeon that he was moving to the Midwest. So, no follow-up appointment for me. I came to a couple conclusions: 1) I was ready to seek care in Seattle. 2) I felt confident that I had exhausted all my non-surgical options which made me more confident that surgery was the correct path to follow.
I wanted to stay close to home for my care. I wanted to support my local medical community. I had faith that they could help me. I don't feel that faith was misguided, just a little premature. Scoliosis is not super common and they just haven't had the same exposure and experience with it as larger places.
On to bigger and better things in Seattle...
No comments:
Post a Comment