I had my appointment with spine specialist on Wednesday. We went over my physical therapy. She wanted to see me walk. She is pleased with progress on my walk. It is only moderately painful to walk now. It is more than she expected. She was pleased with my progress but still concerned that I cannot walk without pain and limp/rotation up of my right hip. Wanted to see me try to balance my weight on the heels of my feet, then on my balls / toes. Both times I stumbled, fell and couldn't do it. My balance is a problem that will not get better no matter what I do. It will get worse as my spinal deformity progresses.
She said she was extremely pleased with the physical therapy and my new life changes. I did tell her the same that I told both physical therapists. That I have tried hard to do twice a day but in the end I seem to only be able to manage once a day except on Wednesdays, Saturdays and Sundays when I can do 2 times a day. Again, I was told the same exact thing word for word that the physical therapists told me. "We say twice a day in the hopes you will at least do it once a day at home. You have exceeded our expectations. You are proof of what physical therapy can do when it is done correctly. We are all very pleased with your progress and please continue doing exactly as you have been." She did go in to what "usually" happens when patients are sent to physical therapy. It was like she had memorized what the two physical therapists had said word for word. They send patients down and the only time the do their "modules" is when they are in the physical therapy center. I find that highly unlikely Who would waste time and precious resources to turn around and not do what they are supposed to do?
She and the Team Lead are concerned about "neurologic" symptoms. Concerned about my balance and visual signs that I am progressing despite my best efforts (trust me I am working really hard to do everything I have been asked to do). The endocrinologist has cleared me. The physical therapist has cleared me. All the other specialists have sent "great reports regarding your progress.".
I can "enjoy your holiday with your babies." "You've earned it. Spoil your angels." and that "we will pick things up and begin images and consult in January." "I have to say it, you are my star patient. I wish I had more like you. You are proof.". I couldn’t even look her in the eye at that point. I was sure I was beet red!
So, I am stable enough to seek surgical help. I am a candidate now. I am also "stable" enough to have a holiday with my family "unless something happens or your have a pain spike please do not wait. Call me. Don't Dont wait. We will take care of anything that comes up." I do have to continue my medications at the same rate. I knew that. I do have high pain spikes still, like today. I have been on the verge of vomiting all day. I hate that I am still stuck with the pain & muscle relaxer combos. The.. "fogginess" wears me down sometimes, but I just do not want to go any higher unless I have no choice. So, for now, I will tuff it out.
In January we will x ray the length of my spine. Measure the cobb angle of my primary progressive thoracolumbar levoscoliosis. My secondary thoracic Dextroscoliosis. See how much my compensatory tilt has progressed / check on the degeneration in my cervical area. I am not sure what to expect at that time. I know there is damage to my spinal cord and narrowing of space and discs space as well as permanent damage to many of the vertebra. It It is all "normal damage" for people who have a progressive spinal deformity. Also, no more "testing". After two full years of blood work and genetic testing I am "Adult Onset Idiopathic"... which is fancy talk for "we don't know". But, on a much brighter note, the statement "we don't know" only cost $450.00 for the last and final genetic test. Not $4,500. With a little luck and a lot of prayer hopefully I will be in a position to financially afford to consult a orthapedic surgeon / can make it until then before anything major happens.
Something else happened that was very unexpected. The nurses all admire the jewelry I make for the girls (I've never worn my own jewelry as I have metal allergy). Last time I went in the girls were wearing their "Birthday Watches" and I was asked to bring in some adult jewelry. So, this time I brought an adult set made from Jasper and Swarovski Crystals. The ladies were ecstatic and praised my work. Gosh it felt so good! Later when I came home I was so sleepy! It was like someone bonked me over the head with a sleeping stick. I went to go lay down. When I woke up David told me that the nurses called and wanted me to stop by with some adult jewelry sets that are for sale. Can you believe it? I of course said yes! Then today another one called and wanted to know if I had anything in the 25 dollar range. She didn’t even SEE my work! I said of course can we see all of your together? So, it looks like next week I have some jewelry sales.
I see my propensity to write a large novel hasn't changed, so I will end this hear. Thank you all for being there for me. It means a lot to me.
TWO roads diverged in a yellow wood And sorry I could not travel both And be one traveler, long I stood Chronic Pain ModeratorMail