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I survived Extreme Lumbar Fusion

Hello...I'm new to the site today.   My background includes a hip placement in March 2012, which was totally successful.  A few months later and still having unidentidied pain , my doctor ordered a ct that found a Pars defect at S1, L5, L4.  The neurosurgeon I went to said "we fix".  So October 2012, he fixed me from S1 to L3.  Shortly after surgery I noticed something wasn't right.  The surgeon said it's normal...it will take about a year t o heal.  Every time I went back to him he said t he same thing.  Frustrated I lived with the pain.   Jump to October 2017.  When I could no longer bear the pain, I went to a new neurosurgeon.  X-rays showed two broken screws and the cap of one back out and was floating.  The rods were positioned too far forward causing me the most pain and caused the hardware to fail.  The new surgeon was confident that he could remove and replace the old hardware and correctly position the rods to the natural curve.  November 17, 2017, a simple surgery turned into "extreme" but I made it through the 10 hour surgery and a nicked Dura causing a CSF leak.  72 staples....from S1 to T12 - a shiny new peek cage bolted to my pelvic bones, 19 new screws, 2 old ones remain in bone.  But instead of being kept flat of my back to let the patched leak heal, hospital doctors had me up walking down the hall less than 24 hours after surgery.  When I got back to my room my BP bottomed out sending me to cardiac ICU for 3 days.  Note cardiac care nurses don't know how to care for extreme back surgery patients.  After 9 days I'm released.  I go home on no blood thinners and supposed to start physical therapy within 24 hrs.  Two and a half weeks later, no PT.  Dec 14, I'm in the hospital with a PE blood clot in my lung.  5 days later I'm home again and with blood thinner meds.  Two weeks later tthe CSF leak is full blown - positional headache, nausea and vomiting.   The surgeon pretends my symptoms might not be from the leak.  Two other doctors tell me - it's a fluid leak.   Frustrated with the surgeon, I read everything I could about CSF leaks and treated myself.   Three weeks later the symptoms go away.  The home health care company was a joke - no PT from them so I do it myself.   4 months since the surgery, I still have issues with numbness and pain and using a cane.  I returned to work 1 month ago.  A desk job and sitting is painful.   For the last week or so, I've had terrible pain with my tailbone!   I searched Google to see if other people have similar tailbone issues and I'm not alone.     After thinking it might get better on its own I've decided to call the surgeon next week.   But I'm terrified at the thought of another surgery.



  • Goodness, I think a call to an attorney is in order.  There's always some dysfunction is scheduling, but it sounds like your care team were not communicating with one another...at all.  You may want to ask for a referral to see a Pain Management Doctor.  PM treatment may help keep you from having another procedure.

    Several Epidurals, L4-S1 360 ALIF, Numerous Facet Joint Injections, RFA x2
  • Oh, I am so sorry for you. You have gone through the war.  I had a similar surgeries to yours, down to my SI Joints and Osteotomies in November. But I didn't have any of your complications. Usually, Surgeons send Fusions to Aqua Therapy at about this time or even earlier. I find it really helps me, even though I need revision surgery. Hopefully, your Surgeon will start with less invasive therapies. Like EMS guy says going to a Pain Management Doc first may be better. They can order Aqua Therapy and give Injections. If your Surgeon wants to operate right away, I would get another opinion. Good for you for going back to work. Take care.   

    Take care and God Bless,
    Mary Anne
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  • Aqua therapy was wonderful!  It was amazing how much it helped and how little discomfort I had because of the buoyancy.  By far my favorite rehab! 

    Several Epidurals, L4-S1 360 ALIF, Numerous Facet Joint Injections, RFA x2
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