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Chronic pain years after scoliosis surgery

rhuckerrrhucker Posts: 1
edited 01/27/2016 - 7:12 AM in Chronic Pain

I had spinal fusion surgery to correct scoliosis when I was 14. For years, I was fine until two years ago. I started to feel pain in my back, especially the middle and lower parts of my back. This would occur when I stood for an extended period of time (usually around 20 minutes, but sometimes it takes even less time for the pain in my back to start). The pain is not sharp - rather a constant, chronic pain that is all over my back and leaves me feeling tired and fatigued. Because of the pain, I have trouble doing everyday activities that require me to stand for long periods of time, such as standing by a scanner or standing on a bus when there are no seats available. There are even some days when I cannot get out of bed or off my couch because of the pain in my back.

I've been to multiple doctors in DC and in Austin to try and find out what's wrong. These doctors have said that the hardware in my back is fine, but cannot pinpoint a specific cause for my chronic back pain and a treatment option to stop the pain that doesn't require drugs, which I am trying to avoid so that I don't become addicted or affect other parts of my body. I suspect that the pain might be a muscle or nerve problem. I do have Turner's Syndrome and one symptom of Turner's Syndrome that I have is low muscle tone. However, I'm not exactly sure if the low muscle tone would have anything to do with the chronic back pain that I suffer everyday.

Has anyone ever had chronic back pain years after having scoliosis surgery? Are there any doctors in the Houston area (I've decided to go to Houston since I've heard Houston has world-class doctors) who are experienced with scoliosis and chronic back pain? I am helpless right now and am tired of this chronic back pain affecting my life. Any advice, information, suggestions on doctors, etc. would be greatly appreciated. Thank you.


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  • LizLiz Posts: 7,832
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    Liz, Spine-health Moderator

    Liz, Spine-health Moderator

    Spinal stenosis since 1995
    Lumber decompression surgery S1 L5-L3[1996]
    Cervical stenosis, so far avoided surgery
  • I am so sorry you are going thru this. I hope they find out whats causing the pain.
  • Hi. I had Scoliosis surgery and was fused from T3-L1 in 1991 when I was 13 years old. I didn't really have any problems for the most part until I was about 25. I wanted to do everything I could as well without having to start pain medication. I went to physical therapy, weekly injections at a chronic pain specialist, monthly injections, the heating pad. Whatever I could.
    I had a desk job and my pain started with a pinched nerve in my lower spine. So my pain made it difficult for me to sit if I was in a lot of pain. Of course over time standing long periods become very difficult to do as well. I am from the Washington DC Metro Area. I had my surgery in that area and saw multiple specialists at multiple facilities trying to get answers. I had every test imaginable. Anyway eventually nothing worked anymore and there was nothing left but pain medication. Being in chronic pain and trying to "tough it out" is no way to live. I started taking something on an "as needed" basis, then it was once a day usually towards evening, then twice, then three and so on. It then became obvious it was much better for me to take a time released pain medication. Anyway to make a long story short I am now 38 years old and have been on pain medication since I was 26-ish. When I was 31 I had to move to Scottsdale, AZ because the cold wet weather became to difficult to bear.

    What they don't tell you before spine surgery is when you have such a large fusion over time you can start to have degeneration above and below the fusion. And these unfused areas are much weaker than the fused area of your spine.
    I also was diagnosed with Osteoporosis when I was only 31, Fibromyalgia when I was 33, and I haven't had a period since I was 30 years old. And finally when I was 31 or 32 they determined I was in early menopause. So my choice about whether or not I ever wanted to have children was taken away from me.
    I'm also a former federal government employee, was hired as a physically disabled person, had medical documentation on file stating very clearly my limitations, as well as I was quite vocal about them. But apparently my managers thought they knew more than actual spine surgeons, neurosurgeons, and chronic pain doctors. Even the federal government physician they have to review such limitations agreed with my doctors. Anyway I was asked to perform tasks I should not have been doing and to make a long story short I tore 3 discs in my neck and I tore 2 discs in my lumbar spine. Of course this is only fixable by another fusion surgery and even then they can't guarantee I won't be in pain anymore.
    So I live in chronic pain on a daily basis and have for the last 13 years. It affects everything. It's been very difficult for me to accept. It's everyday, day in and day out. It has effected every facet of my life. It is beyond a frustrating situation. I feel for you. Anything you want to know specifics on, you can send me a private message.

  • SavageSavage United StatesPosts: 5,427
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  • dilaurodilauro ConnecticutPosts: 9,846
    beaschgooer said:

    hen you have such a large fusion over time you can start to have degeneration above and below the fusion. And these unfused areas are much weaker than the fused area of your spine.
    That your doctor did not discuss this with you. I would how ever change some of your wording in the above quote. The unfused ares CAN be weaker (not much weaker) and CAN be a potential area for additional problems. Every doctor I have discussed fusion and non-fusion surgery stress the importance of post surgical recovery procedures to ensure that the adjoining disc areas around the fusion do not become too weak.

    This same concept applies to lumbar and cervical patients. You are open to potential problems in the thoracic area. That was my situation. 4 Lumbar (none of them fused, but after 20+ years of scar tissue, it was almost like fused) and 2 ACDFs, my thoracic area started to take the strain. Eventually, I had 4 herniated Tdiscs. I probably could have avoided or at least minimized that situation if I did more to strengthen the Tdisc, Rib and stomach areas.
    Ron DiLauro Spine-Health System Administrator
    I am not a medical professional. I comment on personal experiences
    You can email me at: rdilauro@veritashealth.com
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