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  1. #1
    Join Date
    Mar 2010
    Location
    Oklahoma City, OK
    Posts
    71

    2 year post revision pain

    Hello all,
    I haven't posted in quite a while, but I check in often. I'm searching for anyone that may have had a similar experience to what I'm dealing with. I'm 2 years post revision surgery. I followed all the surgeons instructions, wore my brace and used the bone stimulator just like I was supposed to. I've been dealing with a lot of pain since my surgery and over the last year, it has gotten quite bad. I am under the care of a very good pain management doctor and if were not for the fentanyl, oxycodone and lyrica, I would not be able to function. I am about to use up all my sick leave and vacation leave at work because of the really really bad days I can't get out of bed. I don't sleep well even though I take temezapam (Restoril) and a muscle relaxer at night. The pain meds and pain make sleep difficult.

    I would love to hear from anyone that might have even a smidgin of information or similar experience. Thank you in advance for taking the time to read.
    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
    Aug 2009
    Location
    St. Louis Missouri
    Posts
    48

    Cool We Need All Tips & Pain Relief Suggestions

    Hello:

    I had my revision surgery in 2006. Fused now T3-Sacrum.

    I was out of work for 6 months. When I returned, I had pain but not extreme. However, Few months later, after I stopped narcotic pain meds and water therapy, the pain grew worse each month.

    I missed a lot of work for the next 4 years until I finally had to take an early retirement at age 55. I also had to file for disability mainly for the Medicare Insurance which I just came eligible. I didn't like doing the disability because I have had Scoliosis since age 6 and pain since I can remember. Just learned to accept it.

    But now, my pain, I am assuming due to degeneration, is extremely painful all the time except when I am in bed. (With pillow under my knees, etc.).

    I tried pain management,but they can no longer due injections in my spine due to fusion that they cannot get through. My Spine surgeon, Dr. Lenke, who is supposed to be the best, sort of dismissed me and my pain during my last appointment at which I waited 5 hours 15 mins for Dr. Lenke. He talked more about his pain with a herniated disc. Sort of left me very depressed. I know he probably didn't mean it. I know Orthopedic Doctors are known for their "coldness". I've been seeing Orthopedic Doctors since age 9 so I know their about their "bedside manners".

    Nevertheless, I am not giving up, I keep researching my pain symptoms, etc, and continue with different types of doctors. I am recently looking into SI Joint pain and still my Iliac screws which I think may have contributed to my pain with sitting, standing, and walking since after my 2006 surgery.

    It seems like we have to be our own Medical Advocates with our painful disability that we unfortunately have to live with for the rest of our life.

    I like this Forum because I feel like only people living with Scoliosis can really understand our pain and also we can help each other with treatments or helpful information that we can share with each other.

    So anyone reading this please share any tips or suggestions that you have tried that have worked or failed. Hopefully, we can all one day have relief from our daily pain and be able to enjoy life with our loved ones. We know we can't be totally without pain. It just would be nice to have occasional relief.

    Sincerely,

    Your Scoliosis Friend.

  3. #3
    Join Date
    Dec 2008
    Location
    illinois
    Posts
    758
    Pain is so hard on the body and can't be measured well. If it bothers you daily and has an effect on resting,working or just being --it is big{pain scale 10}. I never understand that as pain is different for all of us.I do not have any magic--but when I was in difficult pain--it was from a missed fracture that took a while to show up on xray.Then the Dr sort of told me he was sorry for not understanding why I was in pain.
    I would say keep looking as something may not be right. You know your body and will also know when things are right.
    I too am on disability for the insurance. I have not been able to find work that I can do--but i will keep trying.

  4. #4
    Join Date
    Jan 2012
    Location
    Yacolt, WA
    Posts
    1,525
    Daily pain, I hate to call you that as it describes your pain and not you! Suggestion: keep a diary with as much detail as you can. If you need to copy those body pictures like they give us at appointments to mark on, that would be great. Write down the quality of pain and what makes it better/worse, what time it started, etc. the more daily detail, the better.

    Good luck! Hope that there is some relief out there.
    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

  5. #5
    Join Date
    Mar 2010
    Location
    Oklahoma City, OK
    Posts
    71

    Thanks!

    Thank you for the responses. It's so incredibly comforting to know I'm not alone (even though I hate like crazy that others are in pain!) and someone understands.

    I too love and appreciate this forum. I have a really wonderful family and friend support system, and they are all sympathetic. But this type of pain, like most any specific condition related pain, is difficult if not impossible to understand unless you experience it yourself. And sometimes I just need to vent to people that "get it". We aren't always looking for answers, sometimes we just need a shoulder.

    Dailypain, it sounds like I had a similar situation with my first spine surgeon that you had with Dr. Lenke. Dr. X (as I will call him) started out very attentive, concerned and interested. Everything was good all the way through surgery up to about 18 months post op. At that point I was still having lots of pain and had begun having issues with posture. I was definitely leaning forward but Dr. X suddenly became distant and dismissive. I finally realized I was not going to get the care I needed from him so I began getting other opinions. Long story short, I found a wonderful surgeon in Texas and had revision surgery in June 2011. I am so sorry you've had to deal with so much pain and frustration. This truly can become a very depressing life and it's a 24/7/365 struggle to keep going. But we do, because we are strong people and we have each other to lean on. I'm glad you are not giving up. Answers are out there for you, just like my answers are out there for me, somewhere. We just have to keep getting out of bed in the morning, very carefully, and put one foot in front of the other!

    jackieg412, I saw my surgeon last June for my one year post op and again in September to try to determine the cause of the pain. The x-rays showed no problems both times. I had CT scans done in September also and according to my doc, they looked good. BUT, I know my body and I know something isn't right. Before I started having bad pain, maybe before 2008, I never sat! I didn't watch TV, I didn't surf the web, none of that. I was always moving. And I rarely felt bad. But since I hit menopause and the curves began progressing quickly, it's all been downhill. I'm on waaaaay more medication than I've ever been on. I was told by my surgeon if physical therapy didn't help, and it did not, the next step is to do basically exploratory surgery so he can actually look around and try to find the problem. It's my understanding when he goes in, if he finds no problems and the fusion is good and solid, he will remove the hardware and hope that will correct the issue. If he gets in there and there's a problem with the fusion, he will re-fuse, change the oil and rotate the tires and hope that helps. That is what I was told last year. I have an appointment to see him August 28 so hopefully I'll get some answers then. I live 4 hours away from his office (I'm in Oklahoma City and he's in Plano, Texas) but I've told his schedule person if he gets a cancellation, all I need is 4 hours notice and I'll be there! I'm so very ready to get this train moving!
    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

  6. #6
    Join Date
    Jan 2012
    Location
    Yacolt, WA
    Posts
    1,525
    Becky: changing tires must hurt! Sorry about that comment, but I was engrossed with reading your comments and came to that part and for a second thought, "why would they do that?" You got me.

    I hope that your visit at the end of the month gives you some information or at least a plan.

    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

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