Just joined, in hopes that someone with similar issues can provide some assistance. A little about me and why I joined...
I was diagnosed with Idiopathic Structural Scoliosis (S curve as well) when I was 9. I went through all the wonderful braces and exercising and ended up having Harrington Rods place from T5-L1, in 2003, when I was 17. My Thoracic curve was 57 and Lumbar was 32 at that time. My surgeon at the time warned that if I did not have the sx that the curves would increase at the very least 1 degree per year and that, with the structural aspect, my right ribs would end up puncturing my heart and/or lung within 2-3 years. Talk about scare tactic. The healing process was not good, of course, but I was back to regular activities (college, dance team, working, etc...) in about a year. I thought I was golden.
About 3 years after the initial sx, I began to have slight lumbar pain and very mild sciatica down my right leg. At the 5 year mark it had become much worse. Fast forward to 10 years after, my lumbar and sciatic pain had worsened so much that I needed a cane to assist in walking. (Needless to say, most likely, I was on SEVERAL different meds during this entire time. At times when I didn't have insurance, I did what I had to do. Most helped at first but, since they mask the pain, I would hurt much, much worse when it would start to wear off b/c I had done too much and not realized it.)
In 2012, a doctor discovered a ruptured disc at the end of the rods, L 2-3. During the healing process, after a microdiscectomy, the sx failed and the disc collapsed. I will never forget what that felt like. To "repair" this I went to see a specialist here, in Memphis, and he said that extending the rods would be my best option. So, in January of 2013, I went under the knife for a third time. He attached connectors to the existing rods and extended the fusion down to L4. The third time wasn't the least bit charming, let me tell you. This fusion ended up being labeled as a failed fusion because it took about 2 years to fully fuse.
About a month or so after the extension, I began having what my surgeon referred to as "spasticity". My legs began to convulse, then a couple months later the contorting and convulsing started in my neck. It continued to progress and now effects the right side of my body, some of the left side, including, jaw, eyes, neck, arm, hand, legs, abdomen and diaphragm (as if my breathing wasn't hindered enough). During the time it was progressing, I went to a Neurologist and was diagnosed with Dystonia. Dystonia is the 3rd most common movement disorder yet is scarcely known.
My pain is now unbearable, yet again. I have seen several doctors and had several tests lately that have showed even more bad news. I have 3 bulging cervical discs (C3-4,C4-5,C6-7), 1 herniated cervical disc that is putting a good amount of pressure on the spinal cord (C5-6), Cervical Stenosis, 1 thoracic bulging disc (T1-2), 1 lumbar bulging disc, in the fusion (L3-4), 1 lumbar bulging disc with narrowing of the thecal sac and spinal canal and mild facet arthropathy (L4-5), biateral facet arthropathy (L5-S1...deformity pf S1 nerve root, right side greater than left).
Hopefully most of you were able to bare reading until now because now is when I NEED YOU! I have read about tons of people having their hardware removed and that is what I am aiming for. If anyone that is readin has had rod removed, please share your doctors. I am begging you. I don't care where they are, I will travel.
I completely believe that the body has the capability to heal itself when given the opportunity and when strictly abiding by one simple thought - we were made to thrive. The Spine is the most important part of our bodies yet so many don't agree. Where do all of our nerves stem from? If the nerves are compromised then that means the organs, muscles, tissues, nerves, etc. are not going to function optimally. With time, if this interference continues, our quality of life will be DRASTICALLY decreased.
And that is where I am... I have been disabled since 2011, when I was 26, and am 29 now. I feel as if I am in a fish bowl 24/7. AND I'M SICK OF NOT BEING ME! I sick of lying down anywhere from 5 to 12 hours/day. I am sick of feeling like I am 80 years old. I am sick of feeling this barbaric hunks of metal inside me creaking and popping all the time. I am sick of trying new things like Acupuncture, Yoga, Chiropractor adjustments and not getting substantial relief. I am sick of searching for answers and finding nothing but quick fixes and I can't help you's". I am sick of not being able to be with my husband! I am sick of not being able to say, "Hey, babe, let's make a mini us!". I want to be able to trust my body again, I want a solution.
Again, if you have read all of this and if you have had rods removed, or even know of someone who has had them removed, PLEASE share your doctors. I appreciate your time more than I can say, really.
Thank you and I hope y'all are having a great day! Hope to hear from you soon!