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New Member with long standing pain

I have had two surgeries to this point. I have been informed that I can expect to be in a wheelchair in about 5 years. The causes are multiple; accidents while trucking; my weight and natural birth issues. My first surgery was in 2005 and I had neck fusion that was performed flawlessly. I still get some pain from this area though. 2 discs and three vertebra were included in this surgery. After a really bad injury when a truck hit my truck in 2008, I was again going through PT and every pain management technique I could lay my hands on. My lower back was affected this time. Eventually in 2009 I had to do something to try to lessen the pain after a trip of 12 hours my hip had locked and I was nearly unable to go from the car to the house. This was a trip of about 50 feet.I sat down and took NSAIDS. No luck after an hour. I had to have my 120 daughter attempt to assist me back into the car and drove the two blocks to the hospital. They gave me a shot in my hip and sent me on my way. This of course did not last. Two weeks later and three visits to the doctor I was still in pain and had no positive outcomes in sight. After various doctors and tests that more resemble torture I was told that 3 of my discs would have to be removed and possibly a fourth. I asked that only three would be removed as the chance of recovery lessened as more discs were taken out and fused. L3/4; 4/5 and 5/S1 were fused and had bars implanted. The surgery was long but 'successful' at least according to the surgeon. My perception was less as the pain persisted. I was told that this would lessen as time progressed. It actuality the opposite was true. After extensive time at a PT hospital I was released and had to journey on a bus toward home. It was 4 hours while I was still hurting. I am the only driver in my family and so I had no one to come and get me. This was the only way I could return to my family. The surgery was in Eastern Kansas and I was located in Western Kansas. My surgeon had me going to a local PT so I could get better. After several months they released me as I had fallen while in their care and had not progressed to any degree. That means my insurance stopped paying them. Now I ma left with pain in my lower back, pain in my shoulders and my mid-back is inflamed due to a curvature of my spine in the middle. I had to release my position as a special education teacher of behaviorally challenged youth due to the requirement of the need to possibly take down a student (s) who could be endangering others as demanded it. I eventually became totally disabled. I now sit at home and do little. I cannot stand or sit for periods exceeding 10 minutes; I cannot lift more than 10 pounds; I cannot walk more than 100 feet without stopping and taking a break. The pain continues and I am still on the powerful drugs that were prescribed by the surgeon in 2009. SOMA and Vicodin are not good for you in this duration. I know this, but nothing moderates the pain enough to allow me to have what little movement that I do. This account took me 2 hours to write as I had to take breaks to rest. Pain besets me and I have tried to consult with pain management doctors. The costs are beyond what I make from Social security. One procedure using the floroscope and a shot to my S1 cost nearly 4200 USD. I had to pay 20% of that. This has been done twice before I received a bill for my portion. I have asked that doctor to release me back to my Primary care doctor as I cannot afford his services. If anyone has any ideas I would welcome them. God Bless.


  • LizLiz Posts: 8,835
    edited 11/21/2013 - 1:34 AM
    Please take the time to read this post and refer to it when you have questions

    I am sure that you will find your time on Spine-Health very rewarding. This site is a powerful and integrated system that is dynamic and growing.
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    Ron DiLauro


    Liz, Spine-health Moderator

    Spinal stenosis since 1995
    Lumber decompression surgery S1 L5-L3[1996]
    Cervical stenosis, so far avoided surgery
  • First let me say welcome to spine-health. One thing I can say to you is that if your on disability then your getting SSDI? I hope my assumption is correct, which means your also getting medicare and the co-part is 20%. I want you to know that there are programs out there which will help you, get in contact with people to either cover the cost of a supplement or cover the cost of the co-pays. Call medicare and they can tell whom in your state to contact. For example i believe one of the agencies is S.h.i.p.s, however I don't know the exact one for kansas but they are there. But you do need to be in therapy, and have the injections. Preferrable you have a injection and then do therapy. Also keep in mind because someone once made you MMI, under the rules of medicare, that doesn't mean you can't go back to therapy.

    Sounds like you been at this a long time, but don't give up and accept life to be this. Additionally you need to get yourself some type of hobby, or something/. Yes many of us practice all kinds of mental things to get our minds off the pain. It sounds as if your still taking the medications the doctor prescribed post surgery, which if this is so, your body has grown used to them by now and I doubt they are working the way they once worked. We often times have to switch up medications, sometimes working around the spectrum, not necessarily upping doses, but using different medications as are bodies grow used to them. Also have you been on any nerve meds like lyrica or nuerotin those medications can also do some good. Of course the same happens with the muscle relaxers getting used to them.

    Hopefully your in a actually pain management program. Seek out a physiatrist and you might not find one the first time you see a doctor. Of course they will want to make their own diagnoses, but these doctors work with all these medications all the time and they know the combinations that work. If you read around the forums you will hear us call it the blend, and it takes time. Yes the pain does come back medications need to be changed, but you have to do something, as your not getting any better it sounds on the plan your on. Don't be afraid to call doctors and ask them do they prescribe meds, you don't just want a doctor whom does injections alone, you want one with a multi-discipline approach. But look around their are things out there to help make the payments you need to get the proper treatment, and now is the time to do it as it is open enrollment. If someone at medicare doesn't help you on the first call, hang up and call back. I am really good at phone work, sense I need to lay down so much, but I will get to the bottom of things eventually. You need to take ownership in your care and not give up or give in, and know their is a better life out there.
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