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Thread: 2 year post revision pain

  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
    766
    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
    1,527
    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
    1,527
    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

  7. #7
    Join Date
    Mar 2010
    Location
    Oklahoma City, OK
    Posts
    71

    Hope I made you smile!

    Susan,
    I hope it gave you a chuckle. I try to throw in a comment or two that hopefully make people smile. Life can get pretty serious and it's so important to laugh every now and again.

    I thank you from the bottom of my heart for taking the time to read my post, because if you read, you must care. And that goes for everyone taking the time to read my posts. It's comforting to know I'm not alone!
    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

  8. #8
    Join Date
    Jan 2012
    Location
    Yacolt, WA
    Posts
    1,527
    Becky, I do care a lot. I am one of the lucky ones that may just need only one spine surgery, only have fairly minor problematic outcomes from the surgery ( except the incisional hernia, but that can happen with any abdominal incision), and have little pain and discomfort. So why did I have a good outcome? Part luck, part great surgeon. Having this major surgery is really a craps shot.

    I do feel for you, and I hope that you find some relief in the future. I know that I could easily be in your shoes.....by the way, just took my car in for tire rotation....funny, huh?

    Hugs to you, 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

  9. #9
    Join Date
    Aug 2009
    Location
    St. Louis Missouri
    Posts
    48

    Red face

    Hi Everyone:

    You can call me Karen. (If you don't like the Daily Pain name).

    Thank you to the person for the pain log idea. I will try that.

    I have picked another Otho doc to see but not to replace Dr. Lenke, just someone to go to in between my 5 year follow up with Lenke.

    Talk to you all soon and please keep the tips & tricks for pain relief coming in.

    Thanks,

    Karen

  10. #10
    Join Date
    Dec 2008
    Location
    illinois
    Posts
    766
    thanks for the laugh. it is good to do that. really made my day!!!!

  11. #11
    Join Date
    Mar 2010
    Location
    Oklahoma City, OK
    Posts
    71

    Another Question

    Well, I've heard that laughter is the best medicine! But every time I laugh really hard, it makes my back hurt more. I'm such a freak.

    Here's another question for anyone that might come across this thread. Can anyone give me clues as to what might be the cause of this ridiculous pain and what the solutions might be? As I said earlier in this thread, my surgeon has said exploratory surgery is the next step so he can get a look at everything. Has anyone out there ever been in this position? I really don't think there's any broken hardware because the pain has been pretty consistent and relatively the same type of pain. Is there a possibility I'm allergic to the titanium? Could my body just not like having the foreign stuff in there and this is it's way of saying "Get this crap outta here!"? I'm just grasping at straws. My appointment with the surgeon is a week from this Wednesday, and I'm getting really impatient. So, bugging you guys seemed like a good way to pass the time!

    Looking forward to hearing from anyone!
    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

  12. #12
    Join Date
    May 2009
    Posts
    3,745
    to Becky and dailypain...
    i am so sorry you are in pain...
    there is a syndrome i noticed with some doctors...
    when patients do not get better...from an illness, or surgery, or whatever
    they are being treated for, these doctors blame the patients...
    they get to the point where, either from disappointment or frustration,
    they cannot accept that their tx hasn't worked, and they develop a
    negative attitude towards those patients...

    you have the right to expect better from your doctors...even the most
    brilliant surgeon has no right to minimize or refuse to accept what a patient
    tells them...all patients deserve better!
    i hope you each can find the medical help that you need...

    maybe you can ask if removing the hardware might help lessen or elminate the
    pain...????

    jess...and Sparky

  13. #13
    Join Date
    Apr 2013
    Location
    Arizona
    Posts
    40
    Can you apply for FMLA through work? It would help so you are not using up all your sick leave and vacation time.
    *Jen
    Fusion surgery with Dr. Chang May 7, 2013
    Pre-T:50 L:48
    Post-T:20 L:0
    Degenerative disk disease through spine and neck with bulging disks as well. Spinal cord deformity in the area of C5-6.
    {On the road to a lifetime of forever with a back not holding me down!! Vacations, playtime with the kids, adult excursions! Life is moving forward not holding me back }

  14. #14
    Join Date
    Mar 2010
    Location
    Oklahoma City, OK
    Posts
    71
    Good afternoon all,
    I was able to see my surgeon last Friday instead of tomorrow so my constant calling his office for cancellations paid off! Bless their hearts, the office staff is very patient with me.

    The x-rays look exactly like they did last September and no broken hardware is showing up. The plan is to go in at the top of the fusion with a short incision and remove the top 2 or 4 screws and cut the rods shorter. These screws are very close to the surface and the hope is to release the pressure on the muscles over the screw heads and (fingers crossed) aleviate a major part of the pain. He will also be looking for areas of non-fusion. If the fusion looks good he will close me up and the surgery should be around 2 hours. However, if he sees areas of non-fusion, he will extend the incision down until he is satisfied the remainder is solidly fused. That would increase the length of surgery but we will just have to wait and see how that goes.

    In addition to the usual pre-op procedures (blood work, EKG, etc), I will have a psychological evaluation to make sure the pain I am experiencing is physical and not psychosomatic. Apparently a lot of insurance companies are now requiring this evaluation for anyone dealing with chronic back pain following multiple surgeries. Ok, fine, I'll jump through whatever hoops I need to but I really want to get this show on the road! I see a little light at the end of the tunnel and I'm ready to, metaphorically speaking, RUN TO THE LIGHT!

    back2life, FMLA is not an option due to my financial situation. I will be eligable for leave-share at work so hopefully, I won't have to miss any income.

    Thank you everyone for being supportive. I love this group of people!
    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

  15. #15
    Join Date
    May 2008
    Posts
    169
    Alleycat, your posts are my posts. Believe it or not our problems are just so much the same. They wanted to take the top off my rods as that was the only bit they could get to but could not promise that I would not still be in pain. For goodness sake do not think that will happen to you as both our cases are different but our symptoms are the same, this will work for you I just know it will. I sympathise like you would not believe and as far as it being in our heads that is ridiculous, who wants to imagine pain all the time. My Xrays were exactly like yours, honestly so strange. It helps to know that you are not alone so please keep in touch and let me know how you go, just think how wonderful it will be to have that relief. The others who have commented, we are all certainly in a little club of our own aren't we.



    Lorraine.
    Operated on in 1966, harrington rods inserted from T4 to L3, here in Australia. Fusion of the said vertebrae as well. Problems for the last 14 years with pain.
    Something I feel deeply,"Life is like money,you can spend it anyway you wish, but can only spend it once.

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