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Thread: One year post revision..Yay!! still some issues......

  1. #1
    Join Date
    Oct 2010
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    Houston
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    Wink One year post revision..Yay!! still some issues......

    Hi Y'all!
    I am one year post revision surgery(yay!) T10 to L5 anterior -posterior. Overall have improved a lot over the last year but not back to square one. I am just wondering from the old timers out there(Years post,not age!)what to expect. I am back to work which is somewhat physical as I am an OT (no lifting). I am surprized how much my mobility changed from extending down one level, but am getting use to that. Have hit my head quite a few times not realizing I don't bend as well as I did!! My frustration now is my left leg is weaker than it was, I still lean slightly forward, when I'm tired my upper back is painful and I feel like it is falling over the top of the rods. I can't lay flat on my back or I have terrible SI joint area pain. Never had pain lieing down before and it definetely is interfering with my sleep. Will these things continue to improve? I have had a lot of PT which helped a lot. I am heading to my 1 year appointment soon. Advice?? Comments?? I want to be prepared for my appointment with realistic expectations. Thanks so much!!!!

  2. #2
    Join Date
    Sep 2003
    Location
    Northern California
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    Quote Originally Posted by cyndiotr81 View Post
    Hi Y'all!
    I am one year post revision surgery(yay!) T10 to L5 anterior -posterior. Overall have improved a lot over the last year but not back to square one. I am just wondering from the old timers out there(Years post,not age!)what to expect. I am back to work which is somewhat physical as I am an OT (no lifting). I am surprized how much my mobility changed from extending down one level, but am getting use to that. Have hit my head quite a few times not realizing I don't bend as well as I did!! My frustration now is my left leg is weaker than it was, I still lean slightly forward, when I'm tired my upper back is painful and I feel like it is falling over the top of the rods. I can't lay flat on my back or I have terrible SI joint area pain. Never had pain lieing down before and it definetely is interfering with my sleep. Will these things continue to improve? I have had a lot of PT which helped a lot. I am heading to my 1 year appointment soon. Advice?? Comments?? I want to be prepared for my appointment with realistic expectations. Thanks so much!!!!
    Hi...

    It sounds like you have some real issues. When you go in for your postop, I would ask the doctor to measure your sagittal balance (hopefully while you're in the room). It's not uncommon for people with fusions starting at T10 to develop proximal junctional kyphosis. (It's not wrong to start fusions at T10. There are a lot of doctors working right now, trying to figure out which people whose fusions start at L10, develop PJK, and which don't.)

    I would also push for an explanation of your leg weakness and why you can't lay flat on your back. Have you tried injections for your SIJ pain?

    --Linda
    Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Dilbert
    I'm sarcastic... what's your super power? --Unknown
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    Surgery 2/10/93 A/P fusion T4-L3
    Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation
    ---------------------------------------------------------------------------------------------------------------------------------------------------
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  3. #3
    Join Date
    Jun 2011
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    South Jersey
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    Hello there fellow OT! I am too! You're questions are good ones and they need explanation by your doctor so keep a list and bring them with you. With each question, i would be as specific as possible. Explain to him what helps your pain and what makes it worse (if anything: change in position, length of time in that position, heat/cold, activity level, etc) I'm sure you'd be able to answer those off the top of your head but if he doesn't ask, i'd tell him. Also, you said that "overall you've improved alot" - in what ways?? (and be specific for him) - also list for him ways in which you still feel limited (or things that have not improved or have gotten worse) - For example, you mentioned you can't sleep at night due to pain, can't lay flat on back, upper back fatigue from leaning forward (still with flatback it sounds like) - the leg weakness and SIJ pain need to be addressed as well and if he doesn't recommend a scan or some sort (CT possibly) i'd ask for one, especially if the leg weakness is new (post-op). It just sounds like you're still dealing with alot of issues 1 yr post-op which i would have hoped would have improved at this point but i'm no expert - so i hope you get some answers to your questions and that you continue to feel better each day!!!
    1993/1995: PSF w/ Harrington rods T3-L4
    Jan. 24, 2012: ALIF of L4-L5, L5-S1 w/ cage spacer and BMP
    Jan. 31, 2012: PLIF of L1-S1 w/ pelvic anchors
    Scheduled Nov.15, 2012: Fusion T2-S1 w/ pelvic anchors to fix T12 fracture
    http://i31.photobucket.com/albums/c3...ot/myback2.jpg - BEFORE
    http://i31.photobucket.com/albums/c3...CT2342x406.jpg - AFTER
    http://i31.photobucket.com/albums/c3...CT1410x229.jpg - AFTER
    www.jerseyot.blogspot.com

  4. #4
    Join Date
    Oct 2010
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    Houston
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    PJK?Any one know where to find info on it?

    Linda and/or others,
    Do you know where I can read up on PJK? It's hard to find anything much on the internet.Your advice is much appreciated!!!
    Cyndi

  5. #5
    Join Date
    Sep 2003
    Location
    Northern California
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    Hi Cyndi...

    Unfortunately, I don't think there's anything written for patients. Here are a few links for professionals:

    http://www.spineuniverse.com/profess...s-adult-spinal
    http://www.spineuniverse.com/profess...ent-idiopathic

    Regards,
    Linda
    Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Dilbert
    I'm sarcastic... what's your super power? --Unknown
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    Surgery 2/10/93 A/P fusion T4-L3
    Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    If you've signed up and are having trouble posting, please check your spam folder. An email was sent to the email address which you subscribed. You have to follow the instructions in that email. Done that and still having trouble posting? Contact Joe O'Brien at jpobrien@scoliosis.org.

  6. #6
    Join Date
    Oct 2010
    Location
    Houston
    Posts
    14

    SI joint injections/revision surgery again

    Hi Linda and others!
    Well I am having several new opinions due to on going problem one year post revision surgery. As you suggesteed Linda, the first MD is sending me for SI joint injections. Preliminary diagnosis is my L5-S1 disc has collapsed causing me to pitch forward again! My upper back weakness and pain may be coming from the forward pitching at my lumbar spine. He also said sometimes they need to go higher up than T10. I am having a lot of upper back weakness and pain. I look like Im 90 when Im tired because I get so kyphotic. Just doing laundry or dishes for any time wears my upper back out. Still working on getting answers for my left leg weakness. I have 2 more opinions scheduled within the next 2 weeks. I am used to being active, going to the gym, outdoor activities etc. My back gets too tired to do anything much except walk, which I do, although Im still slower than Im used to.. Will having another revision, this time to the pelvis improve my quality of life? I've got a lot to do!!!!!!(I know I will lose a lot of flexibility,that is a given.) Any input appreciated!! Thanks!!!Cyndi

  7. #7
    Join Date
    May 2009
    Posts
    3,745
    hi Cyndi
    just a note about SI joint injections...
    i get them every 3 months now, have done it regularly 3 times so far...
    they have been helping my lumbar pain tremendously...and nothing else
    did....not epidural injections, nerve ablation, facet block, etc...nothing at all....
    so i was really thrilled when my first round of shots helped...but the next round
    did not give me pain relief...i started to read up about SI joint injections on internet,
    and found that the injections are supposed to be difficult to get into the SI joints...
    i complained to pain doc, and the 3rd round went well....but VERY painful....
    my left SI joint is narrower and harder to reach...it sticks out, whereas my right
    one is easy....it lays flat and isn't narrow...the difference in pain for the 2 sides
    is like i have 2 different bodies! i am just telling you this so you might know
    ahead of time that it takes some skill to get the shots right...i know from your posts,
    and since you had fusion surgery, that you are no stranger to pain...

    the other note...i need surgery T4-sacrum w/lumbar fixation...we thought maybe
    it could be T11-sacrum, but my upper spine is getting worse....the botox shots i
    get in thoracic area every 3 months are doing less and less to relieve the pain,
    and i have a "hump" on upper left side....
    anyway, i know in my gut that if/when i have surgery, to do T11 instead of T4
    would put me back in the OR within a year....

    you have all my sympathy about your problems....
    i know how much pain discs can cause....mine are bad in lower lumbar....
    and i feel badly that you went thru all this surgery, but still have these problems...
    i hope SI joint shots help you, and i hope you find the right answers to address
    the spinal problems that still cause you pain....

    Question.....your original post said a doctor recommended extending your fusion to sacrum...
    guess you decided against that when planning your revision....??

    jess
    Last edited by jrnyc; 01-27-2012 at 08:52 AM.

  8. #8
    Join Date
    May 2008
    Location
    reno,nevada
    Posts
    3,531
    Hi Cyndi,
    So sorry about all of this.... I just wanted to say that one of the locals out here had PJK and I referred her to my surgeon. He extended her up from around T10 to around T2 and she is doing fine now.

    Funny she is an old scoli, and hid her pain well, for 2 hours. After that I could see that she was in major pain, and leaning forward up high . She could barely make it to her mailbox and was giving up all hope.

    I was fused all the way down and have no problems at all down low. It’s the one area that I thought that I might have issues, it sure did turn out well.

    If you cant sleep, its hard to have a decent quality of life.....

    Jess,
    You are our “shot queen” for sure. Do you know how many shots you have had?

    It was 10 years ago this week that I triggered my sciatica with a high ski jump....wow, wow, wow, was that a painful event. And eventually led to me making a decision to have my surgeries. I was scheduled to have a shot,(in Aug 2002) but did ocean therapy and had a temporary fix. On and off for 6 years with 4 lumbar herniations.

    My quality of life was not good, and Jack Daniels does not work on nerve pain. I tried. Jack Daniels is not a great non-surgical method of pain control. I did the studies on that...... (Smiley face)
    Ed
    49 yr old male, now 58, the new 53...
    Pre surgery curves C12,T70,L70
    ALIF/PLIF T2-Pelvis 01/29/08, 01/31/08 7" pelvic anchors BMP
    Dr Brett Menmuir St Marys Hospital Reno,Nevada

    Bending and twisting pics after full fusion
    http://www.scoliosis.org/forum/showt...on.&highlight=

    My x-rays
    http://www.scoliosis.org/forum/attac...2&d=1228779214

    http://www.scoliosis.org/forum/attac...3&d=1228779258

  9. #9
    Join Date
    May 2009
    Posts
    3,745
    you are amazing, Ed....
    i cannot believe what you do on a ski slope...
    crazy....just crazy!

    i don't know how many shots i've had by now....
    i had at least 3 epidural injections, at least 2 times facet block, 2 times nerve
    ablation, 4 times SI joint injections, 3 of them recent, each 10 weeks apart....

    i was just told that my latest X ray shows increase in lumbar curve to 70 degrees...
    Dr Lonner saw 61 degrees in the X ray he did in his office April 2010...
    i know it is almost 2 years later and a different doc looking at the new X ray....
    i hope he is wrong!
    i am gonna have other surgeons check it out, and am thinking of going to
    see Lonner this spring....
    i want to ask him what he thinks about SI joints...mine in particular...
    Linda said that her surgeons told her that fusion surgery, even down to sacrum/pelvic fixation, doesn't always relieve SI joint pain, even if it relieves other pain...
    that bothers me, as my SI joints, particulary left one, are bad....
    left one "sticks out and is very narrow" per the doc who does the SI shots
    ...it hurts like heck when he does the left one, and the right one
    is a piece of cake...it is like i have 2 different bodies, the pain is so different!!

    hope you get to ski this wkend.....

    jess

  10. #10
    Join Date
    Oct 2010
    Location
    Houston
    Posts
    14

    Cool Update

    Hi everyone,
    Thanks for your responses. I'll update the questions from everyone if I can. Linda, The second surgeon I went to is sending me for a lumbar CT myelogram and a lumbar EMG. He also wants to find out why I have leg weakness. He also agrees with trying th SI joint injections so I can sleep better, as that's when I get the most pain. Ed, your friend sounds just like me. I can hide it for a while but as the day goes on I'm more and more kyphotic. MD says he thinks its because of the L5-S1 disc collapse causing the fusion mass to pitch forward. Jess, I was advised year ago to only have fusion to L5 to preserve more mobility as long as I could. The current MD told me he use to do that but it never works out so he no longer does it that way. I think I knew it wasn't right not long after my surgery a year ago. I knew I was going to have another surgery and i think at this point I'm ready to get on with it. I have always been very active and I want to get on with my life already! Lots of appointments ahead, 1 more opinion, but I am more than happy with the 2nd MD so far. I must say on top of everything else, I've worked hard all my life to stay in shape and try to stay young for my age, but this pitching forward bit is really a kicker in the vanity department! When this is over I'm defineltely going to the carribean or Hawaii for a nice long Vacation!!!(no bikinis though, still too vain for that!!)

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