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I've Returned! Now with L4 Retrolithisis & Stenosis! SCS Trial?

Hello All -
I haven't posted in a very long time as I really felt I had nothing new to contribute and rehashing everything I was going through was just too much effort. Long story short - I injured my back at work in 9/09 and have struggled everyday since then. Although Workers Comp has recognized the accident and I have an open award letter from our state WC commission, denial of diagnostic procedures and treatments resulted in such damage that my only option was an L5-S1 ALIF after I started losing my ability to walk. At 12 weeks I had bone growth but a difficult recovery. I had a great deal of lordosis and my hardware had to be very carefully fitted to the curvature. My surgeon had been afraid the hardware would torque out of the bone. I developed bursitis in my left hip and my left SI joint locked. I received cortisone injections in the bursa, the SI, piriformis, a couple of epidurals - pain continued to increase and function decreased. I felt that something had physically changed in my spine but to my knowledge I had not done anything to injure myself. I had felt something pop when moving or turning over in bed - it felt ominous, but could you seriously hurt yourself turning to your side in bed?
WC case manager would not allow me to return to surgeon, PM doc just kept giving meds and injections. Luckily PM retired and I was able to get a referral to new PM and went back to my original spine orthopedist. Ortho did a flex x-ray and immediately found source of pain/new problem - L4 Retrolithisis, facet joint is as he said 'a total mess' and spinal stenosis. He explained that the fusion fixated the L5 and altered the curve so much that basically the L4 vertebra 'fell off' the stabilized spine. That explains the searing pain from L mid back into buttock, hip, and down back of leg; numbness down back of L leg, bottom of L foot wrapping around little toe, tingling below back of right lower leg and foot; and pelvic floor pain if standing too long. Whew.
New PM is suggesting SCS trial. Ortho says only surgical option is an L4-5 fusion. Oh my goodness. What to do? I'm not quite two years from my first fusion. It was the biggest, nastiest surgery I've every been through. I'm 56. A very young 56. Prior to my accident I had a super healthy back. I did yoga and Pilates. I had studied ballet for 24 years - if anything I was too flexible. Now I have permanent restrictions of sitting and standing intermittently for less than an hour each per day, walking as tolerated. I spend most of my time semi-reclined and taking lots of meds. Is there a chance the SCS will improve my quality of life? I'm sure ultimately the fusion will have to be done - but I want to be in the best shape possible. Is this reasonable? Anybody care to discuss?
Pat Gibson
L5S1 ALIF 2-22-11
Now L4 Retrolisthisis


  • lstellerllsteller Posts: 1,428
    edited 11/10/2012 - 8:17 PM
    Oy! I had a worker's comp claim once for my hands - carpal tunnel. With the 'care' I received through WC, I swore that if I ever injured myself on the job again, I would immediately run out into the street and claim that I had fallen on the public sidewalk. Fortunately, or not, when I tripped and fell backwards onto the corner of my lawnmower engine, I was in my own driveway, so I had control of my care, within the limits of my health insurance. I was offered a SCS, but refused. While I was not in imminent danger of paralysis if something shifted in my spine, I didn't think the unstability was something I wanted to deal with and I opted for the fusion. I had a three-level, L3/4, L4/5, and L5/S1. The recovery was sheer hell, but I can now walk and pain is only occasional. I am stiff -- sort of feel like we used to say about stuck up people - walk like they have a broomstick up their butt. ;P I've heard so many horror stories about the SCS -- there are some recent ones right here in the chronic pain forum. But then again, there have been a few people who have gotten tremendous relief, at least for a while. Do a lot of reading, Google all you can find on the web. I believe in being well-informed before letting anyone put stuff in my body.
    3 level spinal fusion, L3/4, L4/5, L5/S1, November 2008. Stiff, but I can walk.
  • Isteller has some good advice - do your research and be well-informed. However, if you are researching the different categories on Spine Health, please be mindful that some posts will not be that positive because the members that visit SH are quite often still battling with ongoing pain symptoms. Those that have had successful fusion surgery and/or scs implants are out living their lives and may not return to SH that frequently any more.

    I can well appreciate that it's very difficult to know what to do for the best - i.e. to have another fusion surgery at L4-L5, or to have the spinal cord stimulator. I would have thought your health professionals could advise you further on this.

    I can only offer comments on my own experience. I had a 2-level fusion in 2010 but unfortunately the pain continued and in 2011 I had to have revision surgery - but with no success. I had put all my hope in the fusion surgery 'curing' my back/leg pain symptoms and was (and still am) so disappointed that my pain problems remained after all that. Anyway, I am now in the process of being considered for the 'Nevro' spinal cord stimulator - which is supposed to relieve/reduce pain in the back and leg at the same time. It sounds too good to be true, I know, but I've tried everything else (all the conservative treatments and invasive surgery etc.) that I am left feeling that I have nothing to lose by trying the scs - if it is offered to me.

    I don't know where abouts in the world you are, but here in the UK it's very difficult at the moment to be treated on the National Health Service because of their limited funding, shortage of staff etc., so I have had many different appointments along the way, and am waiting for my case to go to panel to be approved or denied. It can take many months, I understand that, but it's not as if my pain issues are going anywhere, so I have all the time in the world and I am in no rush.

    With you having had fusion surgery before and experiencing such a slow and painful recovery, I wonder if you should try the SCS first as it is far less invasive? Then, if it doesn't work out, you will have the L4-L5 surgery to fall back on as a last resort in the future. Of course, this is only my opinion, and I should seek your surgeon's advice before making any decisions. Perhaps your surgeon has people you can talk to who have had the scs implanted? One important consideration is, if you have the scs implanted first, you CANNOT have an MRI afterwards because its very strong magnets can alter/damage the scs device. If your surgeon has done many scs implants before, what are his/her success rates? As far as I know, each patient that receives an scs device has to provide regular reports on its effectiveness, or otherwise, up to 2 years - so there may be evidence that might help you to decide either way.

    For me, I have already had the fusion and, to be honest, I have nothing to lose by having the scs implant - that is, if I am considered to be a suitable candidate for it and if they think it would help to reduce/control the pain more effectively. Only time will tell.

    Please let us all know how you get on and what decision you make in the end.
    2 x Microdiscectomy 2005 / PLIFusion 2-level 2010 / revision surgery 2011 / NEVRO Senza spinal cord stimulator implanted February 2013. I WILL NOT GIVE IN / UP !!
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  • Pat,

    One thing to consider as Isteller put it, typically the SCS are used as a course of last treatments after all the surgeries have been done and so on. If it was me in your shoes I would take the fusion all though hard on your body, it might eliminate a lot of pain. You could be stuck in a situation with work comp, of if you take the SCS they will not do surgery. While money should never be a discussion for treatment it will be. The SCS is expensive and if your back continues to decline, surgery might have to be done anyway. But you could also be in a situation that surgery will be done to stop the progression not cure the damage that has been done. Keep in mind the SCS will only mask the current issues you have, it will not cure the pain. SCS are used to treat pain while surgery is to fix structural issues, which it sounds like you have. I would talk to your surgeon and ask them what happens if you wait on surgery? My experience with work comp tells me they will not pay for a SCS if surgery is on the table. However if the surgery doesn't cure your pain then the SCS they would have to pay for, providing you pass the medical test. Either way you choose good luck, and I hope it cures your pain, but keep us posted.
  • Miss FairfaxMMiss Fairfax Posts: 1
    edited 11/12/2012 - 4:54 AM
    Why would you want to keep putting a band-aid on an issue when there is a chance you could resolve the problem? Neurostimulators are not as benign as doctors tend to make them sound. There are many possible, potentially dangerous side-effects that go along with them, and even at best, only some of the pain would be removed.

    When I saw your post, I was motivated to join this forum. I went through something similar, with a very rough first fusion (which was medically "successful) that did not resolve my pain at all. I'll spare you all the details, but after much work over a space of two years, I finally had a "revision" to my fusion. It was added on to on either end, and it was only during the surgery that the surgeon realized the extent of the damage to my facet at L3. Mine had completely worn away due to the instability at that spinal segment. I suspect something similar is going on with you, especially since you have the spondylolisthesis. This can be extremely painful as the area is unstable and this can result in nerve compression.

    Even though several lumbar nerves were severely compressed for at least six years, I am now virtually pain-free and am out living my life. I would encourage you to find the very best spine surgeon that is available to you and think about having the mechanical problems resolved before you even think about getting a neurostimulator.

    If it helps any, my revision surgery, which was a much bigger surgery than my first fusion, turned out to be much less painful and was much easier in many ways.

    I wish you all the best.
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