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Thread: Revision after a revision???

  1. #1
    Join Date
    Mar 2010
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    Oklahoma City, OK
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    Revision after a revision???

    Hello everyone! I haven't posted in quite a while, but I lurk around to check on everybody from time to time. I need a little input, if you don't mind.

    I had revision surgery June 27, 2011, and I just can't seem to get where I should be. I saw my surgeon in July for my 12 month post op appointment, and the x-rays taken at that time looked good. My problem is my pain levels are increasing instead of decreasing. I'm still on Fentanyl, Oxycontin and Lyrica for pain, and that only takes the edge off enough so I can continue to work full time. I'm exhausted all the time from fighting the pain, and I have to take Restoryl and melatonin at night so I can sleep past the pain and the waking effects of the pain meds. I have made an appointment to go back to see my surgeon in a couple of weeks because I just do not feel "right", if that makes sense to anyone.

    I become physically sick when I think about the prospect of a third surgery. In fact the first 72 hours post-op of the revision surgery last year were so bad, I've begun having nightmares again just thinking about the possibility. I would appreciate any information/ideas/sympathy anyone is willing to offer.

    Thanks so much!
    Becky
    51 years old
    Married 28 years
    3 kids ages 23, 21 and 17
    Fused T-10 through L-5 June, 2008
    Developed junctional kyphosis, flat-back and sagittal imbalance
    Revision Surgery June 27, 2011
    Fused T-4 thru S-1 with pelvic anchor screws
    Take 2 revision October 15, 2013 to locate source of continued pain
    Pseudoarthrosis at L-3, 2 screws removed

  2. #2
    Join Date
    Jan 2009
    Location
    Ames, Iowa
    Posts
    1,250
    Becky--
    I'm sorry you are having so much difficulty. It all sounds awful especially with that much medication. Did the same doctor do both surgeries? I was originally scheduled for surgery at Baylor in 08 with the surgeon that died a couple years ago. His name has suddenly escaped me. I chickened out and ended up with Dr. Lenke in March 09 which was a good thing. I sure hope your surgeon has some answers for you. Janet
    Janet

    61 years old--57 for surgery

    Diagnosed in 1965 at age of 13--no brace
    Thoracic Curve: 96 degrees to 35 degrees
    Lumbar Curve: 63 degrees to 5 degrees
    Surgery with Dr. Lenke in St. Louis--March 30, 2009
    T-2 to Pelvis, and hopefully all posterior procedure.

    All was posterior along with 2 cages and 6 osteotomies.

  3. #3
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    Jan 2012
    Location
    Yacolt, WA
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    1,525
    Becky, So sorry about your continued pain.That is one of the outcomes that worries me. As the woman who posted above said, maybe get another opinion for a well qualified spinal surgeon? I'm not saying that your MD was not quaified, but another opinion might shed some light on your problem. I applaud you for fighting through the pain and going to work. That must be exhausting. You are one brave woman! Susan
    Last edited by susancook; 09-09-2012 at 01:54 AM.
    Adult Onset Degenerative Scoliosis @65, 25* T & 36* L w/ 11.2 cm coronal balance; T kyphosis 90*; Severe disc degen T & L stenosis

    2013: T3- S1 Fusion w/ ALIF L4-S1/XLIF L2-4, PSF T4-S1 in 2 surgeries
    2014: Hernia @ ALIF repaired; Emergency screw removal surgery for Spinal Cord Injury at T4,5 sec to PJK
    2015: Revision Broken Bil T & L rods and no fusion: 2 revision surgeries; hardware P. Acnes infection
    2016: Ant/Lat Lumbar diskectomy w/ 4 cages + BMP + harvested bone + prayer

  4. #4
    Join Date
    May 2010
    Posts
    345

    Thumbs up I know your pain!! 3rd REVISION soon!!

    Quote Originally Posted by allycat View Post
    Hello everyone! I haven't posted in quite a while, but I lurk around to check on everybody from time to time. I need a little input, if you don't mind.

    I had revision surgery June 27, 2011, and I just can't seem to get where I should be. I saw my surgeon in July for my 12 month post op appointment, and the x-rays taken at that time looked good. My problem is my pain levels are increasing instead of decreasing. I'm still on Fentanyl, Oxycontin and Lyrica for pain, and that only takes the edge off enough so I can continue to work full time. I'm exhausted all the time from fighting the pain, and I have to take Restoryl and melatonin at night so I can sleep past the pain and the waking effects of the pain meds. I have made an appointment to go back to see my surgeon in a couple of weeks because I just do not feel "right", if that makes sense to anyone.

    I become physically sick when I think about the prospect of a third surgery. In fact the first 72 hours post-op of the revision surgery last year were so bad, I've begun having nightmares again just thinking about the possibility. I would appreciate any information/ideas/sympathy anyone is willing to offer.

    Thanks so much!
    Hi, Oh do I know how you feel. You have my deepest heartfelt sympathy for what you are facing! But you must go forward,as you are way too young to live like that. And you have so much to look forward to. You deserve a better quality of life and start to enjoy that great family you have. I had two revision surgeries that didn't work. They were trying to fix flatback surgery brought on by a L3/4 L4/5 fusion with instrumentation. (2006) The revisions were with different surgeons in my home state of So. Dak., in July&Oct. Of 2010. Now, the surgeon I am going to is Dr. Lenke in St Louis Mo. Yes, 12 hours from where I live. But I'm hoping every mile is worth it. I am bent over very bad and have terrible pain every day. But my children are grown, so I don't have that to worry about that so much. However, this isn't anyway to live. So Oct. 29 th is my Surgery date! I picked a world renown surgeon that uses some different procedures that sound like will work much better with my situation. Anyway, I am very confident he can do this. Keep us posted and I will stay in touch. God Bless You as you go forward with finding the right surgeon and medical team to give you back your life. Linda
    Linda Brozik~~60 yrs. old at time of Lenke's first surgery. 62 now!
    Surgery 2006 L3/4 L4/5 double fusion/ instumentation/ With 2 cages
    This started adult onset scoliosis
    July 1st, 2010/ surgery ~~fused T10 to pelvis (long rods/ screws)
    Oct.20th 2010, extended rods to T4 / did osteotomy at L3
    Oct. 29th 2012 Dr. Lenke St. Louis Mo. T4 to sacrum osteotomy anterior cage L3/4 titanium rods
    May 30th 2013 revision
    May 8th cervicle surgery 2016
    May 31st Dr. Gupta revision 2017

  5. #5
    Join Date
    Sep 2003
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    Northern California
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    Quote Originally Posted by allycat View Post
    Hello everyone! I haven't posted in quite a while, but I lurk around to check on everybody from time to time. I need a little input, if you don't mind.

    I had revision surgery June 27, 2011, and I just can't seem to get where I should be. I saw my surgeon in July for my 12 month post op appointment, and the x-rays taken at that time looked good. My problem is my pain levels are increasing instead of decreasing. I'm still on Fentanyl, Oxycontin and Lyrica for pain, and that only takes the edge off enough so I can continue to work full time. I'm exhausted all the time from fighting the pain, and I have to take Restoryl and melatonin at night so I can sleep past the pain and the waking effects of the pain meds. I have made an appointment to go back to see my surgeon in a couple of weeks because I just do not feel "right", if that makes sense to anyone.

    I become physically sick when I think about the prospect of a third surgery. In fact the first 72 hours post-op of the revision surgery last year were so bad, I've begun having nightmares again just thinking about the possibility. I would appreciate any information/ideas/sympathy anyone is willing to offer.

    Thanks so much!
    Hi Becky...

    Unfortunately, a small percentage of people need more than 2 surgeries. It may or may not have anything to do with a surgeon's expertise. There are doctors around the country who specialize In revision surgery. If there's any way you can see one of thaes specialists, I would encourage you to do so. The doctor closest to you is probably Mike LaGrone in Amarillo.

    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
    Mar 2010
    Location
    Oklahoma City, OK
    Posts
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    Thank you everyone!

    Thank you to all for your replies. It's amazing what a kind word or a little sympathy will do for my disposition!

    Janet, you are thinking of Dr. Shelokov from Baylor. Apparently he was an amazing surgeon and a very nice man. My surgeries were done by 2 different scoliosis specialists, the first located in Oklahoma City. I do have complete faith in Dr. Hostin and believe he will have answers for me. Thank you for your well wishes.

    Susan, after my first surgery in 2008, by the 12 month post-op mark I knew something was wrong, but my surgeon at that time kept telling me everything was fine.
    By 18 months post op I finally got enough courage to get other opinions, and my suspicions were confirmed. That being said, I am not nearly as niave as I was then and I will search until I am satisfied I have the answers I need. Thank you for your encouragement!

    Linda (babyboomer16), thank you for sharing your experience with me. I am very interested in following your story and to see your outcome. I will send healthy healing thoughts your way!

    Linda Racine, I have actually been a member on the forum since 2007, but I was inactive for so long I had to reregister in 2010. As long as I have been around here, I have looked to you for valuable, reliable and solid information. I appreciate so much your input. I am familiar with Dr. LaGrone's name and will keep him at the top of my list of options.

    Again, thank you all for your replies. It's definitely nice to know I'm not alone!
    Last edited by allycat; 09-10-2012 at 12:49 PM.
    Becky
    51 years old
    Married 28 years
    3 kids ages 23, 21 and 17
    Fused T-10 through L-5 June, 2008
    Developed junctional kyphosis, flat-back and sagittal imbalance
    Revision Surgery June 27, 2011
    Fused T-4 thru S-1 with pelvic anchor screws
    Take 2 revision October 15, 2013 to locate source of continued pain
    Pseudoarthrosis at L-3, 2 screws removed

  7. #7
    Join Date
    Jan 2012
    Location
    Yacolt, WA
    Posts
    1,525
    Go get 'em Becky! You have taken the steps to finally get the strong back that you deserve. We are all naive and learn from our experiences. I stayed with the same pain management doctor for 7 months and had no progress. I changed doctors and now have 3 procedures scheduled in a week! I, like you am learning to speak up more and trust my instinct and my body. I look forward to following your story and hearing the conclusion of success and much less pain. Keep us posted. Susan
    Adult Onset Degenerative Scoliosis @65, 25* T & 36* L w/ 11.2 cm coronal balance; T kyphosis 90*; Severe disc degen T & L stenosis

    2013: T3- S1 Fusion w/ ALIF L4-S1/XLIF L2-4, PSF T4-S1 in 2 surgeries
    2014: Hernia @ ALIF repaired; Emergency screw removal surgery for Spinal Cord Injury at T4,5 sec to PJK
    2015: Revision Broken Bil T & L rods and no fusion: 2 revision surgeries; hardware P. Acnes infection
    2016: Ant/Lat Lumbar diskectomy w/ 4 cages + BMP + harvested bone + prayer

  8. #8
    Join Date
    Mar 2010
    Location
    Oklahoma City, OK
    Posts
    71

    Thanks!

    Thanks, Susan. I've heard of numerous people needing 3 ,4 or even 5 surgeries to get to where they need to be, I just never imagined I would be one of those people. My life has been quite odinary and my health has always been good other than the scoliosis so to fall into the minority catagory of anything is a bit shocking! When I had my first surgery in June of 2008, I went into it with the thought I would have the surgery, do the physical therapy, take time to recover and get back to my life. Now here I am, 2 surgeries into this, and based on my instinct, something is wrong, again. I have no medical proof that something is wrong and contrary to what others might think, I'm not looking to borrow trouble. I just know. So again, thank you, Susan, for encouraging me to trust myself and ask the tough questions.
    Becky
    51 years old
    Married 28 years
    3 kids ages 23, 21 and 17
    Fused T-10 through L-5 June, 2008
    Developed junctional kyphosis, flat-back and sagittal imbalance
    Revision Surgery June 27, 2011
    Fused T-4 thru S-1 with pelvic anchor screws
    Take 2 revision October 15, 2013 to locate source of continued pain
    Pseudoarthrosis at L-3, 2 screws removed

  9. #9
    Join Date
    Mar 2010
    Location
    Oklahoma City, OK
    Posts
    71
    Having idle time on my hands is such a bad thing! It gives me time to think and ponder, ponder and think, then I just flat worry.

    In reading other threads regarding problems after a revision, it seems a lot of the time, broken rods in the lumbar area are the problem. The pain I am experiencing is primarily in (I think) the T-8 or T-9 area. I am fused from T-4 to S-1. Since the thoracic spine does not bend even in an unfused spine, logic tells me the odds are against my issue being a broken rod. If that is the case, what are the other possible causes of significant pain in this area 14 months after a revision surgery? That may be an impossible question to answer with any accuracy, but I'm open to a stab in the dark at this point. Like I said, too much time to think!

    Thank you in advance for your "stabs in the dark"!
    Becky
    51 years old
    Married 28 years
    3 kids ages 23, 21 and 17
    Fused T-10 through L-5 June, 2008
    Developed junctional kyphosis, flat-back and sagittal imbalance
    Revision Surgery June 27, 2011
    Fused T-4 thru S-1 with pelvic anchor screws
    Take 2 revision October 15, 2013 to locate source of continued pain
    Pseudoarthrosis at L-3, 2 screws removed

  10. #10
    Join Date
    Aug 2008
    Location
    Indianapolis, IN
    Posts
    416

    Wink my 2 cents

    Becky,
    I apologize , I just started to read your thread, after I responded to your PM...Oh well.
    I am so sorry you have had such a hard time. I really can relate when you say that you are just an ordinary person and never expected any problems. Same here...I live under the radar most of the time but when it comes to my back, I have gotten all of the rare complications. I am going in next week to have yet another follow up xray because I am having some squeaking and grinding in my back which makes me think maybe there might be a loose screw...?

    Have you had follow up visits with your surgeon to evaluate the possible cause of your increased pain? Have you had a CT scan to evaluate for possible pseudoarthrosis? I hope your doctor can help. It's frustrating to go through this kind of surgery and not get the results you expected.

    Hugs across the miles...
    May 2008 Fusion T4 - S1, Pre-op Curves T45, L70 (age 48). Unsuccessful surgery.

    March 18, 2010 (age 50). Revision with L3 Osteotomy, Replacement of hardware T11 - S1 , addition of bilateral pelvic fixation. Correction of sagittal imbalance and kyphosis.

    January 24, 2012 (age 52) Revision to repair pseudoarthrosis and 2 broken rods at L3/L4.

  11. #11
    Join Date
    Jan 2012
    Location
    Yacolt, WA
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    Quote Originally Posted by allycat View Post
    Thanks, Susan. I've heard of numerous people needing 3 ,4 or even 5 surgeries to get to where they need to be, I just never imagined I would be one of those people. My life has been quite odinary and my health has always been good other than the scoliosis so to fall into the minority catagory of anything is a bit shocking! When I had my first surgery in June of 2008, I went into it with the thought I would have the surgery, do the physical therapy, take time to recover and get back to my life. Now here I am, 2 surgeries into this, and based on my instinct, something is wrong, again. I have no medical proof that something is wrong and contrary to what others might think, I'm not looking to borrow trouble. I just know. So again, thank you, Susan, for encouraging me to trust myself and ask the tough questions.
    I hear you! I was happy in retirement and was diagnosed with scoliosis! We all dream of having a healthy life and of being in the 80% in the case of scoliosis surgical w/ good outcomes, but like Linda says, "If you are among the people that have a problem, the statistics mean nothing." It took me 7 months to get a medial branch block scheduled on my back after having the SAME symptoms the entire time! The more that I read, the more certain I was that some of my pain was from arthritis. Finally, I had the procedure and am so much better. I am very angry at my first pain MD for not scheduling it in January, but I need to let go of the anger as it serves no purpose but to spin me up.

    It seems that you have had more than your share of bad luck, but keep plugging and I hope that you get some help from another spine specialist who can sort it out. It sounds like you are determined, so I hope that you will get the help that you need with persistence.

    Nobody ever "borrows trouble". If you have the pain, you have the pain. I would suggest keeping a diary of the exact pain when, where, and description. I went into my neurologist with magic marker lines all over my hip last time having outlined my strange pain, and a pain diary. It helped her to make a diagnosis and a treatment plan.

    Sending good thoughts your way. Susan
    Adult Onset Degenerative Scoliosis @65, 25* T & 36* L w/ 11.2 cm coronal balance; T kyphosis 90*; Severe disc degen T & L stenosis

    2013: T3- S1 Fusion w/ ALIF L4-S1/XLIF L2-4, PSF T4-S1 in 2 surgeries
    2014: Hernia @ ALIF repaired; Emergency screw removal surgery for Spinal Cord Injury at T4,5 sec to PJK
    2015: Revision Broken Bil T & L rods and no fusion: 2 revision surgeries; hardware P. Acnes infection
    2016: Ant/Lat Lumbar diskectomy w/ 4 cages + BMP + harvested bone + prayer

  12. #12
    Join Date
    Mar 2010
    Location
    Oklahoma City, OK
    Posts
    71

    Hardware Removal?

    Hello all--
    Since I last posted, I have had a CT scan done on my thoracic and lumbar spine, hoping to find the cause of all the pain I still have. It's your basic good news/bad news situation. The good news is there is no evidence of broken hardware (rods or screws) and there appears to be good fusion. The bad news is, well, nothing showed up in the scans that would be causing the pain. It's good to know here is bone growth and no metal is broken, but now I'm back to square one trying to figure this whole mess out.

    I'm beginning to wonder if the hardware itself is what is causing the pain and if having it removed would be the solution. Can anyone tell me your experience regarding hardware removal, why it was necessary to have it removed, what was your surgical experience, etc.? I'm grasping at straws and hoping to get any information that might be helpful.

    As always, I appreciate everyone on this forum so very much and value your information/experience. Thank you in advance for anything you are willing to share!
    Becky
    51 years old
    Married 28 years
    3 kids ages 23, 21 and 17
    Fused T-10 through L-5 June, 2008
    Developed junctional kyphosis, flat-back and sagittal imbalance
    Revision Surgery June 27, 2011
    Fused T-4 thru S-1 with pelvic anchor screws
    Take 2 revision October 15, 2013 to locate source of continued pain
    Pseudoarthrosis at L-3, 2 screws removed

  13. #13
    Join Date
    Jan 2008
    Location
    Oregon
    Posts
    1,160
    Hi Becky,

    I am really sorry to hear that you are having so much trouble.

    I am one who had broken rods in the lumbar area. However, it is possible to have a broken rod anywhere there is a pseudoarthrosis. And the thoracic spine does bend, just not nearly so much as the lumbar. So it would be possible to have a broken rod there, especially since you had junctional kyphosis correction done.

    I had two series of x-rays plus a nuclear medicine scan after the first loud, painful pop in my back, all of which showed nothing. A month later, when I had the second loud pop, both rods were visabley broken on the x-rays. I had a CT scan to check for pseudoarthrosis, and they couldn't really tell if there was a pseudoarthrosis or not. Apparently there was plenty of bone growth in the fusion area. Turned out in surgery they were able to find two levels had pseudoarthroses, which is what caused the rods to break. The reason I am sharing all this is sometimes it is not possible to see what is going wrong inside until you are in surgery.

    I hope you will seek another opinion and find some relief. You have been through the wringer, that is for sure.
    Gayle, age 49
    Oct 2010 fusion T8-sacrum w/ pelvic fixation
    Feb 2012 lumbar revision for broken rods @ L2-3-4
    Sept 2015 major lumbar A/P revision for broken rods @ L5-S1


    mom of Leah, 15 y/o, Diagnosed '08 with 26* T JIS (age 6)
    5/10 VBS Dr Luhmann Shriners St Louis
    5/16 6 yrs post-op, 24*T/ 22* L, mild increase in curves, watching

    also mom of Torrey, 12 y/o son, 16* T, stable

  14. #14
    Join Date
    May 2010
    Location
    Indianapolis area
    Posts
    966
    Becky,

    Good to hear your fusion looks good. You asked for stabs in the dark, so here goes. Could it be an infection? Could it be something --scar tissue, BMP, bone -- hitting a nerve? Could it just be that your muscles haven't be enough time to get strong again? What about non-spine related problems that might cause pain in the same area?

    What does your surgeon recommend? I am wondering if it is something encroaching on a nerve, if it could (hopefully) be a smaller procedure?

    Also, about hardware removal. I don't know about that, but you migh want to PM Nanlo. She had a fusion without instrumentation, if I remember correctly. And I believe she said the fused spine, because it wasn't instrumented, continued to curve over time. Check with her.

    Best wishes. You are smart to follow your instincts and seek resolution. I hope you find answers soon.

    Evelyn
    age 44
    80* thoracolumbar; 40* thoracic
    Reduced to ~16* thoracolumbar; ~0* thoracic
    Surgery 3/14/12 with Dr. Lenke, T4 to S1 with pelvic fixation
    Not "confused" anymore, but don't know how to change my username.

  15. #15
    Join Date
    May 2009
    Posts
    3,745
    i believe there is a big difference between a spine that was fused
    without rods, and one where the fusion was done with rods, and the
    hardware is removed AFTER the spine has fused, a year or more after
    the surgery....i am sure Linda Racine could verify that...

    hope you find a doctor/surgeon who can help find the right answer for you,
    and i am so sorry that your pain is getting worse...

    jess
    Last edited by jrnyc; 10-15-2012 at 11:30 PM.

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