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Still not doing well after 2 years

xMARxxMAR Posts: 125
edited 06/11/2012 - 8:57 AM in Back Surgery and Neck Surgery
I haven't been on this site for a while and thought i'd write and see if any one else has this problem. I had a four level anterior/posterior lumbar fusion with hardware from l2-s1. I had constant pain since the surgery and was referred to another well known surgeon who diagnosed me with bilateral si joint dysfunction. I had my left si joint fused in January of 2010 after many many injections with little help. I had my right si joint fused in July of 2011. I still have many problems especially with standing and sitting for even 30 minutes. Laying down is ok, but morning is very sore trying to get up and moving. Don't get me wrong. I walk and try hard to walk but only can walk maybe 50 yards before my buttocks, then thighs, then feet begin to feel like they lock up. I don't know what else to do. I've been through physical therapy, injections, and yes even chiropractor who won't even touch me. Any one else out there going through this. I was let go from my job, which i enjoyed very much and was told by my SI fusion surgeon that I was done and can't do any gainful employment anymore. I've filed for ssd but you all know how long of a process that is. I'm not one to give up, but Iv'e been trying very hard to deal with this. I've also had 5 surgeries on my shoulders back in 2002-2004.


  • Wow I thought I had problems,4 levels fused!
    I'm only dealing with one soon to be redone in Dec.

    Like you I'm not one to give up,I was also let go from my job that I tried very hard to keep but it wasn't meant to be it was just to much.

    I'm also waiting on ssd,I'm still in the mind set that it's only going to be a temporary situation I just have to get my back situation straighted out first then I can get back to living a productive life.

    I hope you and all of us here can find a solution/compromise on all of the problems we deal with.

  • I don't think it matters how much fusion is done. Anytime they work on your back it's a tough going. How long ago was your first fusion if you don't mind me asking. What level? Did your fusion not take the first time? How long have you been waiting for a decision from your ssd application? I filed the end of June. I know it's too early and probably will get turned down the first time, but I have no choice but to wait it out. I hope you will do much better after your fusion again in Dec. This is a good site to talk to one another and we can all relate to each others problems.
  • I had mine done in October of 09 L4/L5, I used a bgs unit after the one year mark and several surgeons later,thats a whole other story.My fusion never did take.

    I've been waiting on ssd for 16 months now,I was turned down the first time as expected,I didn't even want to file for it the first time,that was a sign of defeat for me in my mind but I had no choice due to my ltd insurance rules.

    There is a post on this site that lists the average time it takes for ssd to be approved per state as well as judges and their percentage rating of approvals/denials

    Your right this is a great site for those of us lucky enough to be afflicted with these problems to come together and talk compare and learn/lean on each other. Should you ever need to talk you can pm me any time.

  • When I read your post it reminded me of someone, me. For 15 months after my 5 level fusion, I was like you, in pain and able to do very little. Standing or walking caused spasms and pain. Once I found out that there was no more that could be done for me, I decided to start walking. It was slow to start, and painful. I'd have to stop often and bend and stretch to get through the spasms. It took me many weeks and months to build up my distance and pace. Today, 4 and a half years later, I walk 5 miles a day at a brisk pace. I also play golf and can pretty much do anything I want. Standing, like in line, still bothers me but its something I can live with.

    Emergency surgery in March of 2006 for spinal infection of L 2 and L 3. During surgery, discovered I had Cauda Equina Syndrome. Spine became unstable after surgery and had 360 fusion with 10 pedicle screws, plates and rods in April of 2007.
  • I hope like in Dick's case you will get stronger daily since you just had your last surgery in July. Perhaps using a cane or a walker with a seat will help you with walking and strengthening? Take care. Charry
    DDD of lumbar spine with sciatica to left hip,leg and foot. L4-L5 posterior disc bulge with prominent facets, L5-S1 prominent facets with a posterior osteocartilaginous bar. Mild bilateral foraminal narrowing c-spine c4-c7 RN
  • Thanks Dick and Charry for the promising outlook that you wrote. Wow, 5 levels. That's incredibel that you can walk that distance and especially play golf. I do walk all the time, and living on the second floor apartment I always take the stairs instead of the elevator. I definitley feel better that if you can accomplish what you have, then I will try even harder. It's really nice when there is a forum like this that everyone knows how depressing it can be sometimes. Thanks so much for the comment to my posting. Kevin

    P.S. my screen name stands for former marine. If I did well in the Corps, I know I can beat this!!
  • All I can say to you Kevin is give it your best shot. After being told that there was no more they could do for me, my spine was rock solid and fused but I was still in so much pain because of permanant nerve damage, I figured I had nothing to lose. Walking gave me my life back. I walk outside five days a week, rain, snow or shine. I have clothes for any weather. I walk at a 15 minute mile pace which is moving. It certainly didn't happen overnight.

    I really hope you can find success walking, running, heck crawling, as long as its something. The rush I get when pushing myself is better than any pain medication on the market. Good luck.

    Emergency surgery in March of 2006 for spinal infection of L 2 and L 3. During surgery, discovered I had Cauda Equina Syndrome. Spine became unstable after surgery and had 360 fusion with 10 pedicle screws, plates and rods in April of 2007.
  • Dave I have been giving it my best, I thought, but I'm really not. When you mentioned the rush and feeling you get from walking sparked a nerve for me. I am only 53 years old and I was an avid runner for many years. I ran my last 26 mile marathon in 1998 and let my self go after that. Looking back I can really relate with you on how good you feel the rush you get and a positive attitude about everything. Your walking pace is very fast. I averaged 8 minute miles and that was running! I too have permanent nerve damage and a lot of being plainly de conditioned. There's no more they can do for me either. I thank you so much for the inspiration and will REALLY try harder no matter how much it hurts or aches. Thanks friend, Kevin
  • I understand your remarks were directed to Kevin and his concerns but your comments also helped me. I have been making remarkable progress from severe nerve damage in surgery (2009) and a 4 level 360 fusion (2010). My surgeon, my family physician,and my physical therapist were all impressed at the strength I have developed, my ability to be free of pain meds, my improved mobility (though I am still dependent upon a cane) and my overall sense of well being in spite of the handicap that severely limits my ability to walk. As you know, this didn't happen without lots of hard work. Suddenly in August (2011) a screw loosened and sent me in a downward skid. I just had the screw removed and while it is wonderful to be without all the pain, I'm having to start almost completely over, like from the beginning, to develop strength in my weak leg. So I, too, benefited from your words of encouragement and your model of perseverance and determination. Thanks for helping me get back on board.
  • Your kind words give me more motivation. I have also had a few setbacks over the last 4.5 years. I've had several hand surgeries and hernia surgery this past summer. I have found that when you are laid up, you loose strength in your legs so fast. I'm sure part of it is my age, soon to be 63, but I also believe my nerve damage causes the strength to sap faster then normal legs. My GP doctor told me a few years ago that I somehow tricked my nerves into allowing me to walk and build back strength. I know I didn't trick anything, all I did was fight through the pain and push myself a little further every day. Each morning when I begin my walk, I am in pain. I have a constant pressure in my lower back, my CES pain, that lessens by mile 1. It was that first mile that scared me early in recovery but I was lucky enough to fight through it.

    Keep fighting, you'll get your strength back.

    Emergency surgery in March of 2006 for spinal infection of L 2 and L 3. During surgery, discovered I had Cauda Equina Syndrome. Spine became unstable after surgery and had 360 fusion with 10 pedicle screws, plates and rods in April of 2007.
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