Hardware pain from an extensive spinal fusion
I had multi level scoliosis similar to an s curve with a hump in the t spine. I had a spinal fusion in 2007 from T-1 to S-1. This was a lengthy surgery, about 13 hours with two spine surgeons. The pain was extreme, however, based on what I had done, I thought it was to be expected. I started physical therapy 6 months later and could only progress to minimal levels. The pain was still extreme, virtually everywhere I had hardware, across the shoulders and hips and throughout my entire spine. My mobility is extremely limited, only being able to stand or walk for 10 minutes at a time. I was unable to straighten up and the doctors did a pedicle subtraction osteotomy 10 months after the first surgery which was almost the same length incision, shoulders to tailbone as they had to realign the new hardware with the old. This did straighten me up initially but the extreme pain and lack of mobility continues. I did start physical therapy again 6 months later with the same result. We agreed to quit PTand do the following at home: resistance bands, hand weights and a few exercises on the Wii Fit to get me on my feet.
I have been on extreme pain medication and have gone as high as I am willing to go. Now we are working on reducing/stopping my medication as it is no longer effective. It is scary as my pain is always 8 to 10+++ and if it is helping at all I cant imagine what my pain would be like without medication. The only relief i get is in a recliner with my back, shoulders and spine fully supported and my feet up. That is when my pain is an 8. ;(
My doctor referred me to spine rehab doctor as they have given me a very strong indication that there is nothing more they can or will do for me. I have had multiple MRI's,blood tests, bone density scan, bone scan, three spinal injections, CT and most recently an xray to determine if there was any space in the fusion to insert the catheter for a permanant pain pump and they found that a rod was broken. They referred me back to my surgeon and it was the strangest appointment I have ever had.!! He acted like he hadn't read a single report that the rehab doctor sent him. I was taking out reports for him to read. I asked why my rod had broken, no trips, falls accidents or trauma of any sort and he said he would have to see the film. Wait a minute, what did I come here for and why wasn't I told I needed to bring them?!! He refused to do another xray. I then had to go pick up all of the films for every test I had done and drop them off at his office. This is very difficult as it's a two hour round trip commute for me not to mention the walking and sitting in a straight chair which is very painful. He recommended a pain mgmt doctor but I am so skeptical right now. I have taken many of the anti depressants they recommend for pain and have also done accupuncture with no benefit. I also spent $9,000 out of pocket last year on medical excluding health insurance premiums. Living on long term disability, I cant afford to spend another year doctoring!!
I was told everything from having an L-3 fracture, 3 fractured back ribs, a possible syrinx, spondylosis, degenerative bone disease, etc, etc. but no one has followed up on any of this.
I have lost virtually everything from a 30 year career which I loved and did very well at, the ability to walk for more than a few minutes, cooking, cleaning not to mention the things I love such as travel, gardening, being a grandma. I'm suprised I still have a husband!!
The quality of my life is non-existent. I never expected to have surgery and have my entire life blown up! I am incredibly bored stuck at home, extremely frustrated with doctoring and getting no answers and feel very much alone.
I am going to a major medical center for a group review and will be bringing all pre and post op records. I need someone to be a hero for me, put all of this together and help me! I have way too many years to live it like this. I just cant do it.
Thanks for reading! I just needed to vent!!