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AS found after spinal fusion

So, 

For years I have been dealing with severe pain.  After years of fighting I finally got a spinal fusion  of the L5- S1.  Everything went EXTREMELY well.  I'm finally walking and my pain has been tremendously reduced.  Today I just found out my surgeon diagnosed me with AS of the lumbar spine and I wasn't even informed.  Now I'm sitting here trying to figure out how to feel.  I've had so many symptoms that everyone assumed was not related.  Swelling in my pinky, heart issues, waking up at night in severe pain and really stiff every morning as well as bowel and kidney issues.  My mom has a huge hump and swelling and pain in her spine but everyone assumed it was RA.  

I'm not mad at finding this out just trying to absorb this.  I'm worried that I'm only going to have relief for a small window of time before I'm back to being miserable.  No one can tell me how this will or will not progress.  To make matters worse I found all this out by checking my info on the surgeons website then I called to confirm.  

I'm really worried my wife and son are going to end up down another "rabbit hole".  I don't want to drag them down again.



 
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Comments

  • hvillshhvills Suzhou, ChinaPosts: 809
    edited 01/24/2017 - 5:59 AM

    Drew...

    By "AS of the lumbar" you mean what..??  Since you posted in the Arthritis section of the forum I assume you mean some form of arthritis.  If so don't despair... it's not a death sentence... many people suffer from different forms of arthritis including myself and in many cases the disease is quite manageable.  If you haven't already I would suggest you contact a good rheumatologist and discuss your case to see what treatments he/she might recommend.  My arthritis struck a few months after my second lumbar fusion surgery and when I spoke to my orthopedic doctor he didn't really seem to have a clue... but I managed to see a good rheumatologist some time later and it only took him 5 minutes to understand what was really going on.  He put me on regular Enbrel injections which worked miracles on relieving my joint and lumbar pain.  I haven't look back since...   I also swim everyday which I find is a great daily exercise that doesn't stress my spine or other joints and helps avoid too much stiffness.  In the evenings while relaxing in my easy chair I also sit on an electric heating pad which helps keep my whole body warm... and helps maintain good blood flow.

  • Ankylosing spondylolsis.  It's a form of arthritis that can cause the spine to fuse itself.  It also can cause heart, eye, bowel and other joint problems.  I hear biologics are a miracle but I have so many active infections that no one will put me on them.  My hope was to get off these opioids.  According to my neurologist and PCP  and surgeon I will never fully get off them.  It has so much to do with other genetic issues with meds.
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  •  Ron, were you diagnosed with AS after MRI showed autofusion? Several years after a TLIF I found out arthritis had autofused the adjacent level above the fusion.

     Neurochallenged..Sometimes we're not informed of everything wrong with us. I wasn't told of my post op disc reherniation til months later when consulting with a neurosurgeon. Or of the instability of of the same level. My OS just said he couldn't help me anymore and sent me to pain management. I was confused but grateful to have my pain treated elsewhere. Had no clue I embarked on a long arduous journey of chronic pain. 

     I totally understand chronic pain not easy on our spouses and families. My marriage crumbled because of my incapacity. Perhaps a pain psychologist and family counseling may be of some help. Involve them at doctor's appointments so they get a better grasp of things, and hopefully gain understanding of what chronic pain does.

     The good news is that AS progression can be managed if caught early. Take care 
  • AS is a systemic inflammatory process. I have been Managing it for 20 years without mess. The book anti inflammation diet was helpful. Recent research implicates all night shades vegetables in inflammatory diseases. Avoiding those is getting more important as I age. Magnesium supplementation is also helpful.

    High hopes for you!

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