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Thread: Anyone Else with Osteoarthritis Resulting From Fusion/Anyone Else Quite So Tired!

  1. #1
    Join Date
    Aug 2010
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    Rio Rancho, NM
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    6

    Anyone Else with Osteoarthritis Resulting From Fusion/Anyone Else Quite So Tired!

    I am 44. I am fused from T4 to L2, at age 10. The surgeon told my mother that someday I would have terrible back pain and also develop Osteoarthritis as a result of the fusion. My old internist (since moved to a new state) discovered severe Osteoarthritis in 2004 in my shoulders and neck (my neck is now curved in the opposite direction that it should be). At that time the pain in these areas was chronic but mild, more an annoyance. A year or so later I had a bad fall on my hip and after that I developed chronic hip pain (this is also my longer leg due to the fusion). After that fall I started falling more regularly. I would be walking and just BAM go down without warning. The same internist did x-rays. No break. He figured the pain was from my Sacroiliac joint in my hip and started giving me cortisone injections. They helped and I stopped falling.

    Long story short: I moved out of state in 2006 after my divorce. My insurance ended in 2007. I did work for about 4 months in 2007 but had to quit from the pain. I haven't had insurance since. I can't work at all now, sometimes can barely do housework. Last September I applied for SSI. I was denied but hired an attorney to do an appeal. He says I have an 85-90% chance of getting approved but said to expect it to take at least another 18 months.

    What I want to know: does anyone else have this problem with the Osteoarthritis? I go to a free clinic and the doctor there says there is absolutely nothing she can do for me. She says I obviously need an orthopedist, x-rays, MRI, etc. I can't afford any of these things so I am just sitting and suffering while waiting for the SSI. Meantime, my activities are now about 75% more limited than they were. I have recently discovered that I can't go to more than 2 appointments a week for various things. I can only walk or stand in any combination for about 3 hours a day because of the pain.

    My right hip is constantly swollen and I can't lie on that side. My right leg gets severe sharp pains in my knee and foot. My lower back goes into such terrible spasms that sometimes I can't even sit because it pulls my lower back too much. My neck hurts so much that I can't stay in one position for more than 20 minutes or so. Once recently I met a friend at a coffee shop and we stayed for 2 hours. I was so stiff that I could barely drive home afterward and when I got home I collapsed on my bed in tears. Does anyone else have similar problems? Is anyone else in this much pain? My clinic doctor says the pain will probably get worse! How is that even possible? I can't imagine that. Ugh. Anyway, is it normal to be SO exhausted from all this pain? There are days, like today, where I sleep 12 or more hours because I am so tired just from moving my body around the day before to do normal things like cook and clean. I feel like such a freak of nature!

  2. #2
    Join Date
    Sep 2003
    Location
    Northern California
    Posts
    6,958
    Quote Originally Posted by uscitizen1966 View Post
    I am 44. I am fused from T4 to L2, at age 10. The surgeon told my mother that someday I would have terrible back pain and also develop Osteoarthritis as a result of the fusion. My old internist (since moved to a new state) discovered severe Osteoarthritis in 2004 in my shoulders and neck (my neck is now curved in the opposite direction that it should be). At that time the pain in these areas was chronic but mild, more an annoyance. A year or so later I had a bad fall on my hip and after that I developed chronic hip pain (this is also my longer leg due to the fusion). After that fall I started falling more regularly. I would be walking and just BAM go down without warning. The same internist did x-rays. No break. He figured the pain was from my Sacroiliac joint in my hip and started giving me cortisone injections. They helped and I stopped falling.

    Long story short: I moved out of state in 2006 after my divorce. My insurance ended in 2007. I did work for about 4 months in 2007 but had to quit from the pain. I haven't had insurance since. I can't work at all now, sometimes can barely do housework. Last September I applied for SSI. I was denied but hired an attorney to do an appeal. He says I have an 85-90% chance of getting approved but said to expect it to take at least another 18 months.

    What I want to know: does anyone else have this problem with the Osteoarthritis? I go to a free clinic and the doctor there says there is absolutely nothing she can do for me. She says I obviously need an orthopedist, x-rays, MRI, etc. I can't afford any of these things so I am just sitting and suffering while waiting for the SSI. Meantime, my activities are now about 75% more limited than they were. I have recently discovered that I can't go to more than 2 appointments a week for various things. I can only walk or stand in any combination for about 3 hours a day because of the pain.

    My right hip is constantly swollen and I can't lie on that side. My right leg gets severe sharp pains in my knee and foot. My lower back goes into such terrible spasms that sometimes I can't even sit because it pulls my lower back too much. My neck hurts so much that I can't stay in one position for more than 20 minutes or so. Once recently I met a friend at a coffee shop and we stayed for 2 hours. I was so stiff that I could barely drive home afterward and when I got home I collapsed on my bed in tears. Does anyone else have similar problems? Is anyone else in this much pain? My clinic doctor says the pain will probably get worse! How is that even possible? I can't imagine that. Ugh. Anyway, is it normal to be SO exhausted from all this pain? There are days, like today, where I sleep 12 or more hours because I am so tired just from moving my body around the day before to do normal things like cook and clean. I feel like such a freak of nature!
    You probably have degeneration below your fusion. That's fairly common in people with long scoliosis fusions, as they age. There are things that can help (physical therapy, injections, revision surgery). Unfortunately, with SSI, you probably won't qualify for PT or injections. Once SSI kicks in, you should find a specialist who treats patients with prior fusions. If you post where you're located, you may get some recommendations.

    Regards,
    Linds
    Last edited by LindaRacine; 05-24-2011 at 11:51 PM.
    Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Twain
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    Surgery 2/10/93 A/P fusion T4-L3
    Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation

  3. #3
    Join Date
    Aug 2010
    Location
    Rio Rancho, NM
    Posts
    6
    Thank you! I am in Rio Rancho, NM, close to Albuquerque. I don't understand, why would SSI not cover everything I need?

  4. #4
    Join Date
    Sep 2003
    Location
    Northern California
    Posts
    6,958
    Hi...

    I'm not an expert in the field, but I think the insurance you get with SSI is Medicaid, which is not accepted by a LOT of providers. I do know that a friend of mine, who had scoliosis revision surgery in January, and who is on SSI, could not get approved for physical therapy.

    I don't know any specialists near Albuquerque, but Mike LaGrone in Amarillo, is considered to be one of the best. He's in private practice, however, so I'm not sure he accepts Medicaid patients.

    Hopefully, others know of physicians close to you.

    Regards,
    Linda
    Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Twain
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    Surgery 2/10/93 A/P fusion T4-L3
    Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation

  5. #5
    Join Date
    Aug 2010
    Location
    Rio Rancho, NM
    Posts
    6
    Thank you again Linda. I am surprised. It almost feels like SSI is not really the answer I thought it would be, nor really the answer anyone thinks it will be. Maddening. I very much appreciate your response. Thank you.

  6. #6
    Join Date
    Sep 2003
    Location
    NJ
    Posts
    1,294

    Lightbulb possibility

    This might work. Is there any teaching hospital near you with an orthopedic clinic? They might take someone with your insurance/medical situation.
    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

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