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chronic back pain
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An_257638 posted:
I am 56 and I had a Spinal Decompression/Fusion on L4-L5 S1 in 96, I used bone from my left hip for the fusion and that is where my pain is and it travels across my lower back and in my left butt cheek. I also have what feels like a big KNOTT in my butt cheek, and the area is still SORE TO THE TOUCH, hurts to touch, lay and sit with my back against something like a chair. I see a pain specialist and have been on Narcotics since my surgery, i was on Fentynal changing my patch everyday it was getting to expensive even with insurance so i am on Morphine 60 milg, every 8 hrs and Morphine 15 milg every 4 hrs as needed, plus i also am on Neurontin 400 mgs, and Relafen, and a few other meds, I would like to know if anything can be done to correct this problem, I am sitting here typing this and my left side is in pain, anyone know what could help.
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cweinbl responded:
Sorry to hear about your pain. I had the same surgery in 1991 (bilateral autologous donation fusion from L3 to S1). It was my fourth failed spine surgery. I've done a great deal of research over the past 25 years, as my condition began more than 40 years ago.


Spine surgery has a long term success rate of between 40% and 60%, with lumbar fusion being closer to the 40% success rate. Surgeons never tell you this, because they tend to have a big ego. They consider themselves artists.


Have you been through a comprehensive pain management program? There are no silver bullets - nothing to cure the pain. But some people benefit from treatments. For example, I can reduce my pain noticeably with biofeedback alone. Others claim to have help with acupuncture, kinesiotherapy or injections. It's sometimes a good way to try out a wide variety of combinations of long and short-acting medications, and I emphasize "combinations." TENS can help with neuropathic pain. If all options fail, you could ask your PM physician if you might be a candidate for the spinal cord stimulator or the intrathecal infusion pump. They are a last resort because surgery is required to implant and remove them and all surgery carries a morbidity risk.


Sadly, disc replacement for the lumbar spine is not yet perfected. Disc replacement works well with the cervical spine because it only supports the weight of your head and upper neck. And it delivers better range of motion than a bone graft, rod or cage. But the lumbar spine carries far more weight. Instrumentation is used there today, rather than grafts, including rods, pins, pedicle screws and cages. But that does not significantly improve the success rate.


Comprehensive pain management programs also offer counseling and emotional support. I was very lucky to have a wonderful spouse and children to help me when I had to retire at age 51, ten years ago. I also receive a comfortable pension from my state government. Perhaps most importantly, I was a vocational rehabilitation counselor for seven years. I worked with paraplegics, quadriplegics, people with terminal illnesses, the poor and destitute. Today, I might not be able to work or play golf. But I can sit, stand, walk, feed myself and care for my bodily needs. Millions of people will never be able to do those simple things. In other words, I'm in constant moderate to severe pain, but I'm also very lucky. Many of us have trouble adjusting to the loss of activity, friends, jobs, income, self-esteem, etc.. It's just nice to know that there are professionals if you need them. Living a happy life with a disability like ours is truly an exercise in perspective.


Good luck.
cweinbl
csw2@bex.net
 
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joelin19 replied to cweinbl's response:
Thanks for the information, my Fusion/Decompression surgery was successful fusion is healed fine it is where the bone was taken from my hip that is causing my chronic pain. I applied for Social Security Disability and was denied even though the Doctor from the State and a Vocational Counselor said Nobody would hire me if I was calling in sick more than 1 week a month. I had almost 20 years in with a National chain of drug stores and had to give up my job because I can't be on my feet, sit, stand and walk for long periods of time. I don't know of any job where you are not doing 1 form of that. After my Fusion I did have injections and a tens unit with NO RESULTS, I just don't know if there is anyway to fix the problem. The pain pills don't stop the pain it just takes off the edge. I am at a loss of what to do, the government says I can work and not work and I know I can't successfully hold down a job. That is where I am.
 
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annette030 replied to joelin19's response:
Please do not give up on SSDI, they count on folks giving up. A large percentage of folks who are turned down at first are approved at a later reconsideration date, or at the judicial review level.

Take care, Annette
 
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Anon_11253 replied to joelin19's response:
joe, you need to get copies of your medical records and read them. You need to tell your dr how your problems affect your abililty to do activities of daily living, then you need to get copies of your medical records after each visist and be sure that he wrote it down correctly. Your restrictions and limitations need to be listed. Do Not Assume that your dr knows these things or that he knows what SSA needs to find you disabled, because they don't. You need to be diagnoised with a medically determined impairment, you need the treatments tried and their outcome, meds and the side affects, diagnostic test results, ect.Your age & education are also factored in. Also don't assume if you have an attorney that they will do everything. Be sure and let your caseworker know each time you go to the dr or have tests done, then call back and verify that the caseworker has received your most recent medical records. If your case is at the hearing stage, before your hearing, call the ALJ's office and verify that they have your most recent medical records and all of your medical records since they were received at the initial phase. Even if your attorney says they have submitted the records, you still need to call and verify yourself.
 
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annette030 replied to Anon_11253's response:
I had my primary care doctor write a narrative letter to Social Security stating what had been done, and why, what had been figured out, and the diagnosis, what treatments had been tried, etc. It was only a page or two long. Otherwise, the doctor's office just sends copies of your entire records, useless, especially if it is in the doctor's handwriting and they cannot read it. I only wish I had known all this when I first applied.

Take care, Annette
 
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Anon_11253 replied to annette030's response:
Annettee, I have no idea why my reply was posted as Anon_11253. When SSA requests medical records from a treating source, what is in the medical record for the dates requested is all that is sent. If a RFC form needs to be filled out, the treating source needs to be sure what is in the medical records back up what the RFC states. If not, the treating source may have a ceditability problem with SSA. Medical records need t contain diagnosis of a medically determined impairment, diagnostic test results, treatments tried and their outcomes, meds and side effects, restrictions and limitations. You also need to tell your dr how your impairments affect your ability to do activities of daily living and get copies of thoe medical records to be sure that and there info in written correctly in your medical records. Our drs don't write down everything we say to them or everything they say to us. Drs don't know the criteria SSA uses to determine disability. Just because a dr says you can't work doesn't mean SSA will find you disabled. The narrative letter your dr did had to be backed up by what was in your medical records to carry any weight.
 
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Anon_11253 replied to Anon_11253's response:
On well, I guess WebMd gave me Anon_11253 as a second user name for some reason
 
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cweinbl responded:
From my understanding, you need a very competent attorney who specializes in labor law. I also understand that even with a profound disability, most SSDI applicants are rejected at least once or twice before making it on a third try. Sadly, many terminal individuals pass away before they can be vindicated with SSDI. Do not give up. Eventually you'll get it. But you MUST have a very experienced lawyer.


You can learn about ALL MAJOR interventions for spine-related pain here: http://www.painphysicianjournal.com/2009/july/2009;12;699-802.pdf .


You and I will likely never be free from moderate to severe chronic pain. Our best goal is to put a dent into the pain - to learn how to manage it, rather than eliminate it. I already mentioned many treatment options from the two pain management programs that I attended. No need to repeat.


However, you can put a large dent into your pain with the right combination of medications - and I emphasize COMBINATION. Each of us has our own unique body chemistry. Some of us cannot tolerate or benefit from any medications. In those cases, the SCS or IT pump are last resort options. Some of us require very high dosages, due to an innate tolerance or a tolerance from years of using an opioid. The key here is to try, with your physician, virtually every and any combination of long-acting and short acting opioids, in addition to off-label drugs like your Neurontin. I know that this can take years and a family doctor willing to try them all with you. In my experience and from what I've learned with others in chronic pain, you might have a better chance of doing this with your family doctor that knows and trusts you, rather than a pain management physician who either doesn't trust patients who request different opioids, or who fear raising a red flag for the DEA.


I would suggest as an axiom that everyone with chronic pain should be using a low dose anti-depressant. Most anti-depressants inhibit the reuptake of Serotonin (one of the body's natural pain fighting chemicals) in the bloodstream. Cymbalta. is a fairly new anti-depressant seems to have some pain-fighting qualities.


Fentanyl is now available in generic format. As it is about 80 times more powerful than morphine, many chronic pain patients find it particularly efficacious. If you cannot afford the generic Fentanyl Transdermal, contact the pharmaceutical company that makes it. They often help patients with financial issues to obtain the medication at a lower cost, or even at no cost. You have nothing to lose by asking.


In addition to your current medications, there are dozens of options today, including Tramadol (not technically an opioid), Codeine, Dilaudid, Alfenta, Sufenta, Oxycodone (Percodan), Oxymorphone (Opana), Hydrocodone (Vicoden) and the list goes on and on. There are also drugs that seem to activate opioids or make them feel more efficacious, such as diazepam (Valium) and Midazolam (Versed). Some physicians today, especially POM doctors, are recommending opioid antagonists, such as naloxone or Suboxone. Again, the concept here is to try them out, one at a time, until you learn which ones work best for your body chemistry.


Emotional adjustment is absolutely critical. We're traveling a journey that has changed drastically. We lose some people we considered friends because we can no longer keep up with them in terms of activities. We lose the self-esteem that came from our career and from being a bread-winner. We must find some way to continue to feel productive and to manage the large amounts of new unscheduled time.


Finally, you can try to become involve in clinical trials of new pain drugs currently in the FDA pipeline. Learn more about clinical trials here: http://clinicaltrials.gov/ct2/about-studies/learn .


Best of luck to you.
cweinbl
csw2@bex.net
 
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Anon_11253 replied to cweinbl's response:
The attorney needs to specialize in Social Security Law. Many people are denied because their medical records don't have the details of their ability to function. Just saying someone is in severe pain isn't enough. There also have to be a link between the diagnosis of a medically determined impairment and severe pain. When i t comes to severe pain, SSA requires much more than how much pain you say you're in.

How we evaluate symptoms, including pain-
http://www.ssa.gov/OP_Home/cfr20/404/404-1529.htm
 
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annette030 replied to Anon_11253's response:
No worries, they gave me an extra name as an anonymous person once also.

Take care, Annette
 
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blessedladyptl replied to annette030's response:
Thanks Sweetie ! It was my mistake, I was checking the Post my discussion anonymously and didn't realize it.. LOL


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