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Thread: daily pain

  1. #1
    Join Date
    May 2005
    Posts
    3

    daily pain

    I'm 56 years old and having a lot of pain with my scolosis. I was operated on when I was 26 and had a rod put in but it had to be removed because of staph infection. My curves are now 95 degrees lumbar and 67 degrees thorac. The orthopedic doctor I have been to doesn't want me to take pain medicine because he said of the danger of addiction,so I take 1800 mg of ibuprophen each day. This doesn't help very much at all. I work full time as a teaching assistant in special ed. and I'm careful not to lift anyone heavy. The most pain is between my shoulders and a burning pain on my left side at the hip where the curve is so bad. I have to lie down in the evening around 7pm because my back is so tired from the curves. My husband of 27 years is the best! He helps me a lot. I have been to physical therapy and done yoga exercises but they don't really help. One orthopedic doctor told me that people with my type of scolosis have excruciating pain as they age. Is there any help? I need to continue to work as we have a son in college and I love my job. Sorry this is so long. I have read the forums a long time but never wrote before.

  2. #2
    Join Date
    Dec 2005
    Location
    new jersey
    Posts
    850
    Kaye,
    I have 60/60 curves & 95 thoraculumbar & 85 kyphosis. I thought there was nothing that could be done for me. Thank god, I found a Surgeon who says he can help me and that I have full confidence in! I'm younger(46) than you but I would think if you get checked, there could be help for you rather than the pain you are enduring. I also have pain mostly at night & must retire by 7-8pm. keep in touch...Lynne

  3. #3
    Join Date
    Jun 2004
    Posts
    55
    Many doctors (and patients) are afraid of pain meds because of their reputation for addiction. The thing is, if it is treating real pain, it is not like what most people think of as addiction. My son's orthopod detested the idea of Sean having anything more than regular strength tylenol for pain, but it was truly debilitating for him. He laid on the floor reading books instead of playing with his brothers. I spent months expressing my concern for the pain, we finally got an appt (thanks to our pediatrician... I love the man!) with a pain specialist. The orthopod sent the pain doc a note saying he did NOT want him on narcotics, the ped said help this boy with pain.

    Pain doc prescribed a small dose of methadone and naproxen, and literally, within 24 hours, my son was able to run circles around his father when we picked him up at the airport. The only reason we have had to go up in dosage over the last 5 yrs that he has been on it was due to further surgeries or injury. And he still is on a fairly low dose, only 2x per day. We did have to switch the Naproxen to neurontin as he had a gut bleed, but truly, I am EVER so thankful for the ability to control my son's pain so he can have decent quality of life. Funny thing... the orthopod actually took the credit for sending my son to the pain doc... I didnt correct him, but OH boy was I laughing later on at home! Sheesh!

    Pain can and SHOULD be treated. There are so many good drugs out there these days, and other ways to treat pain that it saddens me terribly when docs like yours are out there not really helping their patients with pain. I would HIGHLY reccomend getting in to a pain specialist. There might be a bit of a wait, but it is worth it, at least it was for my son.

    Heidi
    Heidi (mom to 3 boys, Sean is 9 and has LCDH, SBS, is TPN, O2, and Bipap dependent, has SVC stenosis/stent x4, severe malignant scoliosis fused twice from T1-L2, halo traction for 2 months, severe restrictive lung disease, a CVL and GT, Fundo x2, and is one of my heroes.)

  4. #4
    Join Date
    May 2005
    Posts
    3

    regarding pain

    Thank you so much for replying (the two ladies that wrote back on the same day ). I really appreciate you taking the time to get back to me. I will make an appointment tomorrow with my orthopedic doctor and let you know what he says. Here in Knoxville,Tn there are only two scoliosis doctors that I know of and I have been to both but I'll go back because both of you have given me hope that something can be done. I have been hesitant to write to this site before because I don't want a young person to get discouraged by reading my story. All cases are different and some people have wonderful results with their fusion. The pain has only gotten really bad these last two years and I have lived with scoliosis since age 13. God bless you and have a wonderful day! kaye

  5. #5
    Join Date
    Mar 2005
    Location
    NJ across from NYC
    Posts
    329
    Kaye, I sent you a PM. Lynn
    1981 Surgery with Harrington Rod; fused from T2 to L3 - Dr.Keim (at 26 years old)
    2000 Partial Rod Removal
    2001 Right Scapular Resection
    12/07/2010 Surgical stabilization L3 through sacrum with revision harrington rod instrumentation, interbody fusion and pre-sacral fusion L5-S1 - Dr. Boachie (at 56 years old)
    06/11/14 - Posterior cervical fusion C3 - T3 (Mountaineer System) due to severely arthritic joints - Dr. Patrick O'Leary (at age 59)

  6. #6
    Join Date
    Dec 2005
    Posts
    18
    hi .. SWIMM and it willease u i hope

  7. #7
    Join Date
    May 2005
    Posts
    3

    pain

    I wrote last month and everyone was so kind and informative about my severe scoliosis. I went to the spine specialist here and he said I needed surgery because having the rod taken out back in the 1970s gave no support to my spine and it has continued to curve. He said some of it may be fused but he couldn't tell from the x-rays and also he thinks it has progressed about 10 degrees more in the thorac region. Hence the pain. He gave me hydrocodone and wrote a prescription also for Mobic but my insurance will not pay for Mobic. At this point in my life I don't won't to go through with another surgery and I don't know how experienced he is in working on older patients. I just want to be able to continue working for another couple years and not be hurting so bad I have to go to bed at 6:00 and not go to church and be able to sit for a couple of hours. I go back to see him April 4 so I'm going to ask for a referral to the pain clinic. I have two questions, what kind of bra can I wear that doesn't add more pain to my back? Is it possible for my curve to increase 10 degrees more since last summer?

  8. #8
    Join Date
    Sep 2003
    Location
    NJ
    Posts
    1,291
    Unfortunately, it is possible for these darn curves to increase the rest of our lives. You history is similar to mine except I NEVER had rods to begin with and lost correction.

    I sent you a private message.
    Original scoliosis surgery 1956 T-4 to L-2 ~100 degree thoracic (triple)curves at age 14. NO hardware-lost correction.
    Anterior/posterior revision T-4 to Sacrum in 2002, age 60, by Dr. Boachie-Adjei @Hospital for Special Surgery, NY = 50% correction

  9. #9
    Join Date
    Mar 2006
    Location
    England
    Posts
    56
    I have pain all the time and it's so uncomfortable and frustrating. My curves are 31 and 26 but were originally 29 when I was first diagnosed. I've now been getting extreme pain which has been going on for over a month and is physically and mentally draining me
    Adolescent Idiopathic Thoracic Lumbar Scoliosis

    Back Pain started in October 2001
    Diagnosed - June 2003

    Thoracic and Lumbar curves- 37 degrees
    Started Hospital examination - June 2003
    Discharged from hospital - November 2006

  10. #10
    Join Date
    Nov 2005
    Posts
    96
    Mobic doesnt work
    ~Wanda~
    Age: 18
    40TL curve pre op
    Posterior Spinal Fusion with Dr. Pablo Marrero
    San Jorge Children's Hospital in Puerto Rico
    June 7, 2006
    post op curve: 16

  11. #11
    Join Date
    Dec 2006
    Location
    Jersey Shore
    Posts
    8
    Mobic helped me alittle.But that I was using for arthitis in my fingers.Im falling apart.

  12. #12
    Join Date
    Jan 2006
    Location
    Tasmania
    Posts
    259
    Gailee, what degree are your curves?
    I know what you are going through believe me. My doctor has got me a strong meds but only a small dose. The attitude of all the doctors I have seen is that no one should have to suffer pain so that it interferes with their quality of life.

    Have you been to see an orthopaedic specialist?

    God bless,
    Macky
    Operation 1966, Fused from T4 to L3, had Harrington rods inserted. Originally had an 85 degree Thoracic curve with lumbar scoliosis as well but had a good correction.
    Perfectly normal life till 1997 but now in a lot of pain daily. Consider myself very fortunate though.

  13. #13
    Join Date
    Mar 2006
    Posts
    14
    pain meds all the way.... once your pain is controlled you can exercise which will also help you live a normal existance. i'm hoping to go up from dihydrocodeine to oxy contin or fentanyl. my appointment is this thursday and it will be the differance in weather i live out my days in terrible pain, constantly uncomfortable and extremely unhappy and unmotivated or happy because i can go through a day without wishing i was dead able to live my life going to the gym and socialising whenever i feel like it.
    the pain i get from scholiosis is my prison and oxy contin is the key to the world out there waiting for me.

  14. #14
    Join Date
    Sep 2003
    Location
    NJ
    Posts
    1,291

    Exclamation pain management

    Quote Originally Posted by purecain
    pain meds all the way.... once your pain is controlled you can exercise which will also help you live a normal existance. i'm hoping to go up from dihydrocodeine to oxy contin or fentanyl. my appointment is this thursday and it will be the differance in weather i live out my days in terrible pain, constantly uncomfortable and extremely unhappy and unmotivated or happy because i can go through a day without wishing i was dead able to live my life going to the gym and socialising whenever i feel like it.
    the pain i get from scholiosis is my prison and oxy contin is the key to the world out there waiting for me.
    This is a nice short-term solution; the problem is, unless the cause is addressed, the pain will continue, the curves will increase and narcotics stop working after awhile--despite higher and higher doses.

    I was using fentanyl patch and hydromorphone while recovering from scoliosis revision surgery for 3 months. I was under the care of a pain management specialist who also used other methods, along with those, to enable me to get around, do PT etc. After 3 months we started to taper off those narcotics.
    The withdrawal was terrible and fortunately my pain doc recognized it and used short-term antidepressents to taper off. The antidepressents also helped pain. Gradually, I healed and I am now totally pain free.

    I hate to think of what type of life I would have had if I just resorted to pain-killers and did not address the cause of my pain.
    Original scoliosis surgery 1956 T-4 to L-2 ~100 degree thoracic (triple)curves at age 14. NO hardware-lost correction.
    Anterior/posterior revision T-4 to Sacrum in 2002, age 60, by Dr. Boachie-Adjei @Hospital for Special Surgery, NY = 50% correction

  15. #15
    Join Date
    Jan 2006
    Location
    Tasmania
    Posts
    259
    Pain meds are fine short term as Karen said. They are definately not a cure. Purecain, it worries me that they are putting you on really strong medication that I have read are really, really hard to get off,

    OK I am on strong pain killers, only 40 milligram a day and they do not kill the pain. In fact the pain breaks through all the time. But there is absolutely no way that I would take more because as Karen said your body just gets used to the ones you are on and then wants more and more to control the pain and it is a never ending cycle.,
    Just be careful, honestly I do know what I am talking about and I can read that you are hurting from the pain and missing your daughter as you said.
    I have been in pain for 10 years and truly it is horrible, but you learn to deal with it.

    God bless,
    Macky
    Last edited by macky; 01-22-2007 at 07:32 PM.
    Operation 1966, Fused from T4 to L3, had Harrington rods inserted. Originally had an 85 degree Thoracic curve with lumbar scoliosis as well but had a good correction.
    Perfectly normal life till 1997 but now in a lot of pain daily. Consider myself very fortunate though.

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