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  • 13m post-ALIF, not the success story i hoped to share

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    Old 09-14-2012, 09:09 AM   #1
    cheryl1213
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    13m post-ALIF, not the success story i hoped to share

    Once upon a time, I made myself a promise. I knew that the tendency is to only go online about negative results....whether it is bad service at dinner, a purchase that never worked as promised, or a failed surgical experience. SO I was going to be different. My surgery WOULD work....every indication was very positive....and I WOULD come back and talk about it. Because people do NEED to see the good stories and know that there's a selection bias in posting towards the bad tales. When surgery works, people go live their lives. WHen it doesn't, they stay in posting land.

    But, alas, I don't have that story to tell...

    I was a regular here for a while. I have an L5/S1 anterior lumbar fusion w/ BMP and titanium cages on 8/8/11. I'd tried epidurals and PT and other such thing with no result. The discogram confirmed the suspected level was an issue. And so did the surgery....the doc said it as one of the worst discs he'd seen in years and he does fusions like dentists fill cavities (okay...maybe more like root canals). I trusted this verdict even more b/c Dr Dad is a partnet in the practice so I got pretty clear statements all along.

    I had good indicators for success. I'm 34 now, 33 at operation. I'm 5'4" and hover in the 120s so not overweight. At the time of surgery, I had solid muscle tone so even more "good weight" than average. I do not smoke. I cannot use anti-inflamm for other reasons.

    According to Surgeon (neurosurgeon w/ heavy emphasis on low back, kinda a "Fusion King" regionally), most people progress well for 6m, have a blip that plateaus or slides a bit, but then take off in the right direction. I did okay for the first 6m...indications said I was fusing (incl x-rays...kinda lost on how that changed) and I worked hard in PT. I was let go from PT to keep working myself and weaned off the last meds (I have a VERY high painkiller tolerance but a LOT of withdrawal trouble). And then it went downhill....and kept going....

    By late Feb, I was spending close to 23h/day in bed and I haven't reversed that trend. Worked with Pain Docs, one jerk, one nice, with no help. Recently some bigger side-issues from med switches and just running down too much plus sleep troubles (a couple months waking up at most REM cycles). Started a new physiatrist who did suggest trying my post-op brace a few hours a day....which did help. Paused further ideas while dealing with the new side issues...

    Back to Surgeon this week....13m post-op. Saw the pic myself and it was all too clear. I saw the cages. And only the cages. Not a single bit of bone. Surgeon said that only about 2% have no growth at all with BMP (and that it was on-label use...BF saw ads about off-label suits for the cages/BMP but not relevant to me). None of the factors that increase the risk of being in the 2% apply. As I said to Surgeon, I dont want to be special here.

    So....well, a bit of a backpedal first....I had insurance through the Ex. He got remarried. It was cancelled WITHOUT notice....in fact, when I called, I'd been uninsured for two weeks and they hadn't sent anything. That IS being fixed...I'll have to do at least two months on crazy COBRA rates. But it is slow to get it back in the system...sent the paperwork back (that they only sent AFTER i called) but not processed yet so a bit o Pause.

    The plan --- Surgeon's locale (about 3h from my home, again went far to go to trusted practice...and helped limit bills too) offers a new procedure mixing bone scan and CT that can be more definitive (though really pretty clear I didn't fuse at all). Surgeon wants to do the test then prob plan surgery2, posterior w/ more solid hardware, screws, graft (may be marrow or bone itself). I'm not feeling right with this doc but my inclination is to do the test and then go elsewhere for a 2nd opinion....will also be out of town b/c there are limited options here (could stay w/ family for some of treatment). I am 95% on the 2d operation train....I cannot live like this for 50 more years.

    So....yeah....not the update I planned, but the one I got. Freakin' 2% total lack of growth.

    Positives (trying!!) -- There IS a reason I never dip below a 6 and often hit an 8 or 9 on the pain scale. The pain IS totally vindicated and VERY real. There ARE things to look at (after a long haul being told that I was FINE and KNOWING I wasn't....that's the only place I get really ****** at the docs). I am developing a PLAN and have some HOPE.

    Still, I need a bit of wallow time....

     
    The following 2 users give hugs of support to: cheryl1213
    Cymrudenver (09-27-2012),Phoenix (09-27-2012)
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    Old 09-14-2012, 10:37 AM   #2
    teteri66
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    Re: 13m post-ALIF, not the success story i hoped to share

    Oh boy...I posted on the other post and asked how you were doing...I should have kept going down the lists of posts and would have seen yours.

    I am so sorry you are having all these issues....I'm sure it is made worse by the fact that the surgeon is your dad's partner, etc.

    It is so frustrating when YOU know something is amiss but doctors keep telling you things look good, you are fusing, etc. My friend's problem with non fusion was found with a bone scan...probably the test your are referring to. Half the doctors in the state of Michigan had told her she was fused...and eventually, that the pain was all in her head. I kept repeating my experiences to her and encouraging her to keep hunting for answers...and finally she found one orthopedic surgeon who primarily dfoes revisions, who took one look at her MRI and sent her for the bone scan/CT thing. And it turned out one screw was piercing the L4 nerve, she was very slightly fused on one corner and everything else was a non fusion, and unstable.

    My recollection is that you were having issues that you thought were RSD or arachnoiditis. Did that ever get proven one way or the other, or resolved?

    I'm so sorry you are still in so much pain and are spending your life, at the moment, in bed. I hope your BF is still being supportive.

    Please keep in touch. I would suggest looking for an orthopedic spine surgeon that deals alot with revisions for a second opinion...in addition to whoever else you see.

     
    Old 09-26-2012, 05:32 PM   #3
    Cymrudenver
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    Re: 13m post-ALIF, not the success story i hoped to share

    Oh my darlin, just came to find your story....this is so darn unfair! You had all the odds in your favor and had done so much homework to make the best decision you could.

    What's the latest? How are you feeling emotionally? xx
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    Last edited by Administrator; 09-26-2012 at 07:11 PM.

     
    Old 09-27-2012, 04:26 AM   #4
    Phoenix
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    Re: 13m post-ALIF, not the success story i hoped to share

    Quote:
    Originally Posted by cheryl1213 View Post
    Positives (trying!!) -- There IS a reason I never dip below a 6 and often hit an 8 or 9 on the pain scale. The pain IS totally vindicated and VERY real. There ARE things to look at (after a long haul being told that I was FINE and KNOWING I wasn't....that's the only place I get really ****** at the docs). I am developing a PLAN and have some HOPE.

    Still, I need a bit of wallow time....
    Cheryl.

    It's times like this that we must try to search foras many positives as possible.

    I had a lumbar fusion,which was partly successful.
    I could've stated the negative scenarios that followed but this isn't the forum for this particular thread.

    Don't want to sound cliche;knowthat I feel your pain and can definitely relate.

    Dwelling on the negatives is psychologically draining in and of itself and has the potential to affect the body also(mind/body connection).

    Looking at the bright side of things isn't always easy but where there's hope,there's the possibility of better things to come.

    Respectfully
    Phoenix
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