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Scoliosis chronic pain

im in need for some help!!!!! I’m in chronic pain that really affecting my daily life, getting as bad as I can’t dress myself at 28 yrs old. I’ve been in a very dark place with being a very independant person that don’t like help. I underwent surgery may 2003. They fused T1-T12 with bone graft, I have 4 different curves. The twisting and curves still around 36-41 degrees. I have extreme tingling in all my extremeities that drives me insane. I get stabbing pain that drops me right at the bottom of my fusion. Feels like it shoots up my spine. And only last at most 15- 20 minutes. I was really big into fitness until I longer could physically do it without hurting for DAYS. My surgeon had retired and I have a new quack. He doesn’t listen to any of my concerns and does the same thing I have been dealing with this for the last two years. I have tried some many times to get into I new doctor. And get in response that they feel they can’t help me much. Would love to see how people deal with this I am stuck in a dark hole with no sign of light. 

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Comments

  • hi jadams013

    first I am sorry you are dealing with so much pain. where are you from, and can you travial to another area for care. it sounds to me like you need another doctor. and I do understand the frustration of having a doctor that will not lissen, I have been there. I saw many doctors that all said I needed a higher leveal of care and was beyond what they could do. I saw two different nurosurgons who dealt with scoliosis and even they dissagreed. if you can, keep pushing for another doctor that deals with scoliosis. and even to talk to more then one of them. , and can you get into a pain doctor to help you manage the pain for now? we are here for you, to answer question and just give support. good luck, let us know how you do

  • WLLadyWLLady Ontario CanadaPosts: 1,433

    hi jadams013

    i'm so sorry you have this going on!  first the pain, and then the problems with the doctor.  also, welcome to the forum,  i hope that you find good information here.  there are certainly some wonderful people here and we try to help as much as we can!  you are not alone!!!!  know that-unfortunately many of us know exactly what you are talking about with the pain, and the loss of independence and frustration about treatment. 

    I have to agree with xrobynx.  you need another opinion-another doctor that will listen.  Keep trying to find one.....do you have a family doctor or general practitioner that can help?  do you have a pain management specialist?  do you know any health care professionals that you see that you trust and could ask for advice? 

    have you had any imaging done that might help to determine the cause of the pain?  MRI or CT or xrays?  That would be a good place to start, to see if there's any stenosis or bone spurs or if the fusion has overgrown onto the nerve roots etc....shooting pain up and down your cord sounds very worrisome that there's something pushing on the cord somewhere and a CT or MRI can help to answer that.  If you have a doctor that can order the tests....at least you can get started.  Also, have you had any physiotherapy?  If you are fused there shouldn't be a lot of movement (if any actually) and that can also make the muscles atrophy...physio has been super in helping me to learn how to move safely again so i can do things like work out and do my farm work that i do.  without physio i can honestly say i would be nowhere near where i am today.  that may also be something that you and your doctor can discuss.....see if some targetted physio can help....

    we're here to listen and help....please know you aren't alone-and you aren't stuck in a dark hole permanently-you will get out, but keep working at it, and come back here often please and let us know how you are doing!  these surgeries and recoveries and life afterwards aren't easy, and we understand that. 

    i hope you can find someone to help point you in the right direction for a new doctor.....having a good doctor is so important.  you might need to travel a bit to get to one, but keep pushing and looking for one!  living in chronic pain - especially nerve pain - should not have to happen.


    Kathy
    Spine-Health Moderator
    ---------------------------------------------------------------
    Dec '16 T10-S2 fusion with pelvic fixation. Laminectomies L2, L3, L4, L5, facet removal, cages L4-5, L5-S1, severe scoliosis, arthritis and stenosis repair. 

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  • So I currently drive to see a doctor now, and the doctor I had before was amazing, but of course he retired... I just got x-rays done and going Monday, April 30th for a MRI. I haven't ever looked into a pain doctor because I was so afraid of the medicine that they prescribe and didn't want to become dependent on something. I really just need to find a doctor I trust and listen to my concerns. I have a family doctor and I have let me know whats going on and He is trying to also help me find a new back doctor, It really can get someone down and really affecting my life. I really enjoy this site and to know that I am not the only person out there. Also the profile pic is from the last x-ray. I will keep in touch with my journey to finding that light at what seems to be a long tunnel. And thank you for you both showing concerns and helping with all this. Especially when I thought that surgery was the right answer and now I feel as if I wished I would have waited until I was older.
  • good to hear you are getting some help with finding a doctor, pain center (pain doc's) do not just give meds. they most often use injection of sterriods to relive nerve swelling which causes pain. and it never hurts to talk to them, you can allways decied for yourself if what they offer is what you want to try. I only use my pain med for really bad days. I never used mine the way they say for the same reasons as you, not wanting to be depenent on them. I all so regrated my surgrey at frist, I thought I should of waited, now I am thinking I did it at the right time. lol I still go back and forth on that one. the bottom line, if you wait too long, some of the damage can not be undone. keep posting, love to hear how your doing. here to support you in any way we can.

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