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Failed l4/l5 surgery worst off now

Sorry ahead of time for how long this is  

I had a lumbar discectomy done on l4/l5 for herniated disc, severe stenosis, and ddd; apparently it is hereditary, done 6 months ago after being told I was a perfect candidate only to have it fail and be left with right left weakness and pain and hip pain along with the back pain and the next day after surgery started hearing my hear beat in my left ear which was told its a complete coincidence. I now get a max of 20 mins sitting or standing without having to find a seat or stand up or lay down. 

 I told my original surgeon initially that I was also dealing with numbness down my arms and quiet often pinched nerves in my neck that would last sometimes up to a week. They ignored this and only focused on the lower back and never did a mri on the upper, only lower spine.

 Could upper spine issues be preventing my nerves from healing though? 

The repeated mri of the lower spine after surgery only showed what they assume is a fatty tissue seroma and 2nd degree endplate changes. The odd thing is I actually now have pain that feels like a deep bruising ache traveling up my spine exactly where the seroma fluid shows on the mri. I can send over the mri if you would like to review it, but honestly in some places it looks even worst to begin with; I know I am no surgeon, but I did take quiet a few weeks just reviewing all the postop mri’s I could find and none even remotely resembled what I was left with and I have a hard time believing that the seroma is what they are saying without them testing it as it has a very fluid look to it and to me resembled a lot more csf leaks than seromas; which would also make sense for me developing the pulsa tinnitus directly after surgery. 

I have been back in physical therapy since surgery with no improvement; even when they are using the ultrasound therapy it causes so much pain on the right side of my spine. I  have had injections to try to counter the pain with zero relief and now being told by every doctor there is nothing left to do besides opioids pain management and nerve pain meds. I am already on muscle relaxers 4 times a day and nerve pain meds 3 times a day along with anti inflammatory with nothing providing any real relief other than if I do not take it I am unable to get out of bed. 

Also, before surgery I was originally thought to have an autoimmune as I had a postive ANA speckled 1:160 and crp of 5.4; the RA assumes it is fibromyalgia but even he’s not sure its not just my spine issues causing all of the pain. 
3 months post-op the crp was repeated and showed it raised to a 8.2. I had my doctor repeat this test this last week-6 months postop and it is at a 7.1. 
A little background on the pain; my muscles are constantly feeling exhausted after short distances of walking or if I need to get up and down for whatever reason. Before surgery, I still had full range of motion in both legs, after surgery I can no longer lift my right leg more than a hand length off the bed when lying or kick it out at all. During PT I am still unable to reach the bar during leg lifts after 3 months. I still occasionally get spasms through my lower back. 

I am only 28 years old and I am not ready to take I am screwed up a creek without a paddle without exhausting every effort I can! I have an appointment to even attempt dry needling to find some type of relief and I am terrified of needles! 

Thank you ahead of time and I appreciate you taking the time to read this and for any help anyone is willing to give on what I can possibly do next. 
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Comments

  • I'm so very sorry to hear about the terrible pain you are dealing with.  Do not fear needling - they are very small and have proven effective for a lot of people.  Hoping you find relief some how, some way in the very near future.

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