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6 weeks post SI bone IFUSE questions on pain

Started by 100005849620877... on 04/22/2014 3:20am

I had the IFUSE done almost 6 weeks ago. I had a horse crush me and had a pelvic fracture 25 plus years ago. My SI was separated. Since then I was diagnosed with Ehler's Danlos, hypermobility syndrome, Psoriatic Arthritis and Ankylosing spondylitis. I have had SEVERAL falls from horses....landing on my rear as well as a couple of car accidents...slamming on the breaks whiplash. I have had 2 kiddos as well. I put off surgery for a very long time and had injections, PT, MT, all the pain management conservative treatments until it finally was so bad I was bedbound. My CT scan was ugly. Insurance approved the surgery based solely on that My degeneration at the SI had formed subchondral gas filled cysts it was so bad.
I was hoping for a small miracle with this surgery. I expected pain and was told mine may take longer than the norm due to the severity of my deformed/degenerative SI and pelvis. The radiologist actually thought I had a non union at the pubic rami...not the case after CT scan. It hurts and always has down there...sit bones. Since the surgery the top of my SI has been about 75 percent better however the lower part and tailbone have not improved at all. I am really worried, My surgeon who was all promises and excited to do the surgery now brushes my continued symptoms off saying it is not related. Hmmm? I am a RN and worked in ortho for a LONG time as well as the ER. I do know how it works behind the scenes with these surgeons. WHam, bam thank you for your money mam. Some are great but hard to find. Mine has done a lot of these but he admits mine was more difficult due to the previous chronic trauma. ANyhow....I used my walker for 4 weeks. He wanted me to stop using it at that point and things have not gotten better since. I can not walk or stand for more than 5 to 10 minutes. I hate pain meds so the pain is out of control. I am concerned....my Rheumy says it could be a flare of the autoimmune but it has NEVER been like this before surgery. I can stretch without issue it is bone pain and weight bearing that sucks. I can't sleep well either. I still bring my walker because I have actually had black out fainting episodes. Pain or Ehler's Danlos could be causing that. Im just getting discouraged though because I see all of these happy posts and everyone is doing chores and getting around at 6 weeks. My surgeon like I said says, of COURSE it is not related to the surgery. right! He referred me to pain management who wanted to put me on opiates....I refused. My Rheumy wants to start biologics and a round of prednisone but the surgeon says not until I am 3 months postop...UGH! Any other stories???

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So, how are you now? I am scheduled for iFuse in three days?