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    Failed back surgery syndrome
    painloopy posted:
    Not sure how many folks on this community board know of this condition but I've been suffering from it for 9 years now and know most of the ends and outs of how to handle a pain flare - at least I think I do - but this time has been REALLY rough and I've run out of ideas. Right now I'm on day 12 with severe SI joint pain, shooting nerve pains down my legs, bursitus, hip joint pain, and gripping muscle spasms around my core muscles and butt. and haven't been able to do much of anything except light walking around the house. I can't drive, walk or stand for long at this point. I'm on day 6 with Prednisone but it hasn't done much except upset my stomach and make me mentally wacky. In my normal regime to keep this stuff from happening in the first place I do pool therapy which keeps my core strong but when I get into a flare like this - it hurts the joints too much to manage the pool and all I can manage is some light stretches, heating pads, ice packs, lidoderm patches, narc pain meds, muscle relaxer (methocarbamol) and rest. I can't sleep for more than an hour or two before waking with spasms - does anyone have some ideas for how to work out back/core muscle spasms when you have all these joint things going at the same time?
    bj1208 responded:
    hi - I have failed back surgery syndrome - my main problem is the chronic pain right in the area of the plate/screws that are there -

    I have tried all sorts of physical therapy treatments - anyone even trying to put a finger or try to massage the area and I scream out in pain -

    you may want to discuss this with your pain management physician and/or your spine specialist - sometimes they can do injections (pain shots -consists of pain med and numbing agent) - I had found out that I cannot have steroid injections as I now have bad reactions to them -

    there are other treatments that may help reduce the inflammation/pains you have so please check with your physician.

    let us know how you are doing - take care - Joy
    painloopy replied to bj1208's response:
    Hi - thanks for that suggestion but I've tried steroid injections previously in my facet, SI joints, and artificial disc replacement hardware and they have never worked on my back issues - though I do know several folks who it does work well with so it is definately an option for some. I don't think doctors use them for muscle spasms, plus the fact I'm taking oral steroids (prednisone) I'm sure they would not give me an injection also at this point. I'm usually able to keep my pain to a non-agonizing level by doing physical therapy so when this sort of thing happens - my muscles get SO tensed up that it causes the nerves within them to go nuts (my doctor also said this is what is happening) but I can't work out the muscle without hurting the joints. I did learn some good stretches for SI joints yesterday from a friend online and my pain management doctor increased my Riboxin dose (muscle relaxer) so I did sleep better last night. Thanks again!
    bj1208 replied to painloopy's response:
    hi again -

    i was referring to pain shots and not steroid injections -

    pain shots are a mixture of pain med and numbing agent - i will get these in my back when my joints are hurting so bad - ask your pain doc about it -

    hopefully this will also help when you have bad flare-ups my pain doc gets me in the day I call for the injections -

    take care - Joy
    painloopy replied to bj1208's response:
    Oh - ok. They usually have cortisone in the steroid shots so that is what I thought you were referring to. I didn't know they had one that just had pain med/numbing in it alone. My pain level has been going down every day but VERY slowly. I've been doing my PT stretches twice a day plan to try the pool today for just 5-10 minutes and then hot tub for 20 minutes. I have Rheumatoid arthritis also and was at my RA doctor yesterday who plans on taking some xrays of my hips to make sure I'm not having degeneration of the joint there over time which may be causing some of my problems as well.
    Thanks for the info! I will definately look into it.
    clj1954 responded:
    I haven't been able to access the other replies, but I will tell you that CranioSacral Therapy saved my life due to my failed back surgeries! Most of the symptoms you have I also had and only have occasionally now. This therapy not only relaxes you, but allows your body to release old injuries that then allow your body to heal more. Please consider this therapy as it is a Godsend. Osteopathic physician John E. Upledger is the one who developed this therapy from its roots which began with osteopath William Sutherland . There are therapist all around the country and I am one of them--this is how much I believe in this therapy! Best of luck to you!!!! Hugs!!!!
    KylieAnn responded:
    Are you seeing a Rumy?
    Talk to them about Ankylosing Spondylitis and they should refer you to pain a management.
    Going to a Pain Management doctor, give me epidurals that last 5 months
    The Rumy only has a limited type of injections drugs, some don't work on others. And medication for pain is far better from them also.
    rickie40 responded:
    Have you tried gabapentin.It works well for me. i take 200mg 3x per day.You can go higher than that if you need to.
    NormalPlease replied to painloopy's response:
    I had 2 disc replacements...they failed, so I had to have the 2 levels fused, but I was still in pain and couldn't figure out why. My awesome PT gal diagnosed it as Piriformis Syndrome. I had no idea what that was, but went to research. She was right on the money. Piriformis Syndrome is VERY hard to diagnose. And I had had it for years ALONG WITH my fractured facet joints and arthritis that resulted from the failed disc situation. If you do research, you will find that the pain is excruciating! We put my regular post-op therapy on hold for about 4 weeks to address this problem.It is much better, but it really doesn't go away. I guess it had been spasm-ing over the past years to 'protect' all the stuff going on in that part of my body. Look into the Piriformis Syndrome symptoms...that might be something that is going on with you....? Just trying to help...
    AndorraGirl52 responded:
    I also have the same problems. I get Botox shots in my back muscles every six months at the Pain Center that I attend at a famous university hospital in Philadelphia, PA. Unfortunately, insurance has not yet covered the Botox and I have had to pay for the medication and take it into the doctor. The doctor pushes and prods to find the muscles that are the tightest and that's where the shot goes. I usually 5 on each side ... right and left of the spine. While it's not a pleasant experience, I've been through worse and this is a tremendous help. I wasn't a candidate for the implant several years ago because of the amount of metal and screws in my back ... part of my spine was eaten away by infection from initial back surgery 12 years ago. Try the Botox, but ONLY from a Pain Center with a doctor who is experienced with doing these shots. It's tricky. Hope it helps.
    terbet337 responded:
    I see some good suggestions for back pain. I also have had spine fusions, 1 lumbar in 2001, cervical in 2003. Now I am dealing with the "wear and tear" above and below fusion. My pain management doctor is actually a physiatrist, who is much more qualified to treat back pain. I 've had usual injections, etc. But more recently am having those horrible cramps you are talking about. They are almost always at night. Usually begins in my calf and can spread all the way up my back and down to my feet. There seemed to be no way to stop them. They are under control now with Lyrica. Talk to your doc about it. Those charlie horses are super horrible, totally debilitating, puts me immediately in a 9-10 pain scale. Good luck to you.
    rickie40 replied to terbet337's response:
    Lyrica and gabapentin one and the same results. anyone with pre or post cevical or lumbar surgery should give it a try.I did and am very happy I did.
    painloopy replied to rickie40's response:
    Wow - a lot of great suggestions here. I am definately going to look into gabepentin. I've tried Lyrica and had a bad reaction. I've never heard of botox injections for this purpose but will ask my pain management doctor about it. I have not heard of Ankylosing Spondylitis either so I will definately look into that also. This is why I love this community - so many great resources. My pain flare finally resolved so now I'm back to "my normal" which is still painful but I'm not completely couch/bed ridden. Thanks everyone for the info!
    trs1960 replied to painloopy's response:
    Hmm, Failed Back Surgery Syndrome. I must say I have a problem with this term that is an answer before a question.

    The success rate of multiple back surgeries to eliminate pain is in the single digits...does that mean the surgeons and hence the surgeries are failures?

    I'm not arguing the pain is not real. I understand that. I have 12 levels fused and my spinal column is crushed 3.5 inches shorter than God intended it to be. I have tremendous chronic pain and by definition I too fit in this term. But I don't consider myslef a victim of failed back surgery syndrome. I consider myself the recipiant of the best medical treatments currently available and damn lucky to be breathing let alone walking.

    Again I'm not denying anyone here has real dibilitating pain, but to define yourself as a victim and sufferer of a syndrome with the term "failed" in its title leaves little room for optimism.

    Just my $.02.
    painloopy replied to trs1960's response:
    TRS1960 - I agree with you that the term can implicate the surgeon and surgeries are failures but that is not the correct way to look at this syndrome. In my case - I had an artificial disc replacement after two discectomies within 3 years. The actual surgery and surgeon did exactly what was required on all of them but ultimately I'm in as much if not more pain than I was prior to all of it. The surgeries did cause ultimately the situation I am in now even though they were done correctly.

    In an article by Better homes and gardens Charles Rosen, M.D., clinical professor of orthopedic surgery at the University of California, Irvine, School of Medicine states:. "An enormous number of back surgeries don't give patients long-term relief," he says. There's even a term for what happens when an operation doesn't improve a patient's condition — "failed back surgery syndrome," said to be the only diagnosis named for a treatment that hasn't worked.

    There is even an ICD-9 code for it that doctors use now so it is a real condition. I didn't make up the name - just using what is already been defined by the medical community. It doesn't mean that the surgeon did anything wrong. It just means what was intended to happen didn't happen or made matters worse.

    Thanks for your $.02 - that is what this community is for. Your condition sounds much worse than mine and you know what it is to be in chronic pain.

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