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Thread: seeking advice about non recovery from lumbar l1-s1 decompression and l4-s1 fusion

  1. #1
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    Default seeking advice about non recovery from lumbar l1-s1 decompression and l4-s1 fusion

    Lord am a glad to find these fora alive and well!!! I first joined in the year 2000 and I see the system says my last time on was in 2006. I have been suffering with problems related to osteoarthritis for almost 25 years. First cervical discectomy in 1992. March C6 C7 fusion with plate and screws in disk (!!!) between five and six revised by Todd Albert very successfully in August 2000. Complete right hip replacement in December 2000. Lumbar laminectomy February 2000 was revised November 27, 2013. Complete left hip replacement July 2009. Diagnosed with DISH- diffuse idiopathic skeletal hyper ostosis at Utrecht University, Netherlands in March 2010.

    April 2013 lumbar MRI revealed severe compression of nerve roots at every level of the lumbar spine as well as all foramina on either right or left side and sometimes both. Had experienced gradually increasing difficulty in walking from 2010. Night times began to become stressful in that I would wake up with every muscle in my body from the neck down aching and burning. Apparently this has to do with a fairly normal tendency as one ages for the muscles to stiffen intense when sleeping and not being used. Physical therapy has shown me how to stretch when that happens.

    In 2012 I had been locally tentatively diagnosed as having an autoimmune problem affecting the ability of nerve endings to function. In January 2013 I saw the chief of neuromuscular Department of Neurology at Penn in Philly. He gave me a bunch of tests and set I had nothing autoimmune to worry about and sent me to the gym. Turned out to be good advice but when in April I showed him the DVD of an MRI of my lumbar spine that I just had, he noted the extreme compression mentioned above and urged me to seriously consider surgery warning me that I would eventually lose the ability to walk as well as control over "bodily functions". Rothman a few years earlier had said essentially the same.

    Emailed Todd Albert asking if he did lumbar decompression surgery. Dr. Albert replied “very little” and recommended two other Rothman surgeons. I wound up choosing one who sent me to a Thomas Jefferson Hospital neurosurgeon colleague. He wanted to handle the orthopedic work and have the colleague deal directly with the nerves which made a lot of sense to me but wound up at the laying the date of surgery to the day before Thanksgiving which was not good.

    Anyway on November 27, 2013 both men did an L1 through S1 decompression of the spinal column and foraminal openings on both sides. And then they did a fusion L4 L5 S1 with rods screws and cages. The surgery included the revision of the 13-year-old laminectomy removing huge amount of scar tissue as well as pieces of bone should have been trimmed but were not. The scar tissue impacted directly on the spinal cord between L4 and five. And in removing it they found an area of the cord 5 mm x 10 where there was no dura and where the scar tissue went directly down to the arachnoid layer. There was a bleb but they determined no CSF leakage and put a nylon patch over that part of the cord. The orthopod wanted to fuse the entire lumbar spine; the neurosurgeon convinced him not to and their records stated that my spine was rather rigid anyway with the remaining discs so desiccated that while I have the onset of scoliosis, the upper layers of the lumbar spine were somewhat fused anyway.

    the OR reports were quite clear that they had achieved decompression everywhere. But my recovery has been horribly difficult and a September 25, 2014 MRI much to my dismay references the existence of extreme foraminal stenosis at at least five different places. When I went to my one-year checkup in October the orthopedic surgeon took the special x-ray pronounced my spine successfully fused and generally refused to look at or discuss the MRI borrowing the disk for discussion with his neurology colleague, and eventually returning it without further comment. I emailed DR Albert about his and to my surprise he answered my mail within an hour. He has left rothman and now is chief of surgical straff hospital for special surgery n new york city. Terrific man. I tell people I have a Todd Albert revision the way some people would brag about a stradavarius violin.

    There was damage to the perineal nerve affecting my left leg and afflicting me with a left foot drop. I now wear a carbon fiber ankle foot orthotic on the left side. I have been back to see the head of neuromuscular at Penn.

    He had me come back for more EMG tests and the key results they are apparently was that they found no ongoing denervation. His conclusions: basically that he does not understand my poor recovery that I should continue going to the gym and exercising and that his general impressions are multiple lumbar sacral radiculopathy's some worse after surgery than before. He’ll see me again in six months.

    I have now some scoliosis I think it's less than 15°. I walk with a cane for protection and stability and find it virtually impossible to walk fully upright. If I try to force myself my stability goes to hell before the surgery I could walk a mile and a quarter route in about 18 minutes. Now I cannot even walk around the block.

    Needless to say under these conditions life rather sucks. I've signed up for a full year's worth of 30 minute individual trainer sessions three times a month at the local gym. Due for the second one tomorrow. Trying to figure out what the right balance between strength training, especially in my core and not exacerbating the muscles to the extent the night wind up in pain all night long. Things so far seem pretty random. Night before last was very ugly. And last night thank God was pretty good. Have purchased big rubber ball and a small set of dumbbells and total gym. The trainers for the moment are telling me not to use the total gym and not even to come to their place seven days a week. Yes walk to the extent I can - will be a long slow road. Of course it's already been 16 months after the surgery. So what to do? What are other people's experiences? These are the main reasons I am back.

    I got very helpful advice here back in 2000 2001 and having wasted too much time on a more modern web forum that I suspect is more a means of gathering data to sell the big pharma than anything else, I remembered you guys. Googled and found you and was much relieved. I found out too late yesterday that a block had been placed on my account for reason that I did not know until sysop “Mike” (thank you kind sir) responded to my rather anguished plea overnight and explained that I had listed a web domain in my profile in 2006 that I let go in 2009 and had since turned into a spam honeypot - something of which I honestly was unaware. Yesterday was the first time in 8 years I cam back. Anyway I did some more reading online yesterday and yes things have changed in the last eight years. I am now so old that I certainly don't have any medical privacy that I really care about. But I want to be alert to be sure I don't commit any inadvertent infractions in future and would welcome any advice. :-)

    I have some PDFs of Russian and Himalayan photography i'd like to share where is a good place to do that? They are URLs to enable direct downloads from my web site.

    anyway time to go...

    looking forward to more permanent return

  2. #2
    Distinguished Community Member
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    Welcome back although the reason for you coming back is a sad one that many of us know all too well. I am not doing very well this week but I wanted to say hi and let you know I will read your post and give you what ever advice I can when I am feeling better.
    1979 spinal issues, 1993 lumbar microdisectomy L3-4, 1996 360 3 level lumbar fusion L2-5, 1999 open thoractomy fusion T8-9,
    2002 C3-7 herniations and T4-7 herniations, 2004 total disability, a new limited life

  3. #3
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    First I want to say how fortunate you are to have Dr Albert to turn to. Unfortunately you may be finding yourself in the situation I am in which is this is the best it will be after years of surgeries. I am sorry that your recovery is coming along so slowly and you are still suffering quite a bit. One of the things most surgeons don't do is prepare us for less that stellar recoveries. I was fortunate that not only does my surgeon do great work but he also didn't pull any punches about my future. I hope Dr Albert can improve your recovery but be prepared to accept dealing with each day as well as you can. I have gotten used to my cane and wouldn't think of going without it now but it took a while to get to that point.
    1979 spinal issues, 1993 lumbar microdisectomy L3-4, 1996 360 3 level lumbar fusion L2-5, 1999 open thoractomy fusion T8-9,
    2002 C3-7 herniations and T4-7 herniations, 2004 total disability, a new limited life

  4. #4
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    Ewing NJ
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    Hi Mark N,

    I can see now that for me at least automatic Email isn't working. and I did check my spam filters and saw nothing in there. but I VERY MUCH appreciate this feedback. yes.Todd Albert is top-notch. did I mention he moved from Rothman to medical chief at the Hospital for Special Surgery? I'm not counting on access to him in the future and I really wish that I could find competence assessment in Mercer County New Jersey where I have lived for almost the last 40 years. Our medical system is so horribly fragmented that it is very hard to know where to turn.

    I'm just back from an exercise session at my local gym less than a mile drive from my house. did about 25 minutes and 2 miles on a seated bike and about 20 minutes on a machine that works the abduction and adduction in the thighs and am feeling relatively decent.

    I left a reply earlier this afternoon in new members especially about pelvic pain. said I was beginning to think about posture issues and what to do since I have found myself bent in a very unnatural forward position. That was one reason for the the abduction and adduction work. As I have the third of 36 paid for trainer sessions tomorrow I will try to get advice on a more regular schedule as well as the posture issues.

    another medical clue during the first six months after surgery I would fairly often get spasms of extreme pain in the sacroiliac joint on the right side. that is still where I get the most sore in my pelvic area, but those bouts of extreme pain have largely disappeared. no idea as to the cause but I am pretty sure I have never had sciatic nerve pain. and of course i am glad they are gone.

    I note that you have had issues with your thoracic spine as well. Fortunately i have no known problems there. But in the netherlands in 2010 I had a bnearly 3 hour consult with a rheumatologist at the university of utrecht teaching hospital. She diagnosed DISH and said that the xrays she had take revealed the classic osteophyte accretion on my thoracic spine that is a dish trademark.

    Philosophically you are certainly correct. I am a slavophile with my russian history doctorate. and I have been spending much spare time to the extent I have it making annotated PDFs from nine Russian visits in the 1990s and 10th in 2009. I would be happy to post a list of urls where anyone curious can click and download from my website. someone suggest where to do this please. if it should be done. I have also done annotated PDFs of treks in the Himalaya between 1998 and 2002. for anyone who likes mountains or Buddhism.

    I was fortunate to have a very good liberal arts education at Columbia University obtaining my BA in 1965. At heart I am a dissident and an unrepentant admirer of Roosevelt's new deal. I have been writing in great depth on economic and social impact of Google fiber in Kansas City and have had some feedback that my work has had some positive effect. As you properly point out when life become some what limited one needs to figure out how to adjust ones horizons. But as far as i am concerned Facebook is NOT the answer.
    Last edited by Mike Weins; 04-11-2015 at 11:52 AM. Reason: can't discuss infractions in public

  5. #5
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    Sorry to hear Dr Albert is in a new job that makes it unlikely you can continue with him. Muscle spasms you talk about are the reason I now get deep tissue massages. I have found that if I take care of the muscular issues my pain levels will stay under control. Right now I am suffering because I haven't had any massage treatments lately but I do have one scheduled for next week. It sounds like you are on the right track with the PT you are doing.

    I hope you find that the little improvements end up adding up to big improvements, hang in there.
    1979 spinal issues, 1993 lumbar microdisectomy L3-4, 1996 360 3 level lumbar fusion L2-5, 1999 open thoractomy fusion T8-9,
    2002 C3-7 herniations and T4-7 herniations, 2004 total disability, a new limited life

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