Hey Jainee, I've been through 3 progrmas in the last 15 years, all were very similar to what you described. Some people do get relief and learn how to cope with the pain they have without being dependent on opiates. The thing is, you won't ever know if you don't try. There was a very simple explanation for those that stayed in patient and those that went home at the end of the 8 hour day. They kept Headache patients in patient because Iv infusions were part of their treatment plan. It's more likely whether you stay has more to do with your pain generator than your degree of pain or personality or whatever concerns you about staying in patient.
I could have written the exact same post 1 year post op from my last failed 6 level fusion. The fact that I am where I am today is a combination of things that I have learned from every PM doc, clinic or treatment probgram. I may not use every tool, method or technique they tought, but I took what worked for me and moved on to the next. I gaurentee I use a tool from every program at least once a week. You take what works for you, and if you still can't manage, forget the rest and move on to try something else.
No matter how large the facility I gaurentee you they don't offer everything that is available. Even if you do end op on opiates it's nice to have other methods to fall back on when meds just aren't enough.
Those meds will still be around after you complete this kind of program so it's not like you can never try opitaes if you try an alternative. What will hurt you is if you quit a program once you start because You don't get instant relief. You can't undue the damage to muscles from surgery and the damage living a sedentary life does to your mind and body in a matter of days. You can't change the way you think, process pain or cope with pain in a couple days. Most of these clinics believe that if someone is in enough pain they should be willing to try anything, not just a med they read about or one they know will gaurentee some imediate relief like opiates. CP means a lifetime of dealing with something, and opiates don't address every aspect of PM you will encounter during your life.
I don't know any surgeon that keeps patients on pain meds indefinitely. It's not their job once they have corrected the problem that lead to surgery,. When it comes to fusions, Their looking at stability. If your spine is stable, In the docs eyes, His surgery was a success and it's time to discharge the patient.
Fortunately their are programs to rehab not just your body but your mind and teach you new coping sklls to deal with the changes that come from going from functuonal to disabled in the blink of an eye.. A DX from the surgeon saying that one of the 12 or 16 screws we used is broken or that one of the 18 sights we tried to fuse didn't take really doesn't change anything when it comes to how docs manages pain. It's easy to rattle of diagnosis that are no more than discriptions. "failed back surgery syndrome" That is a legitimate DX but all it says it that for some reason your still in pain despite stability being addressed or a nerve being decompressed. So they use a descriptive DX for billing purposes, but that doesn't change the treatment you get from docs that believe their methods work.
Despite having gone to a dozen PM docs and three 8 hour a day, month long programs, I wasn't able to find a combination of alternatives that would allow me to function that didn't include opiates.
In the last 15 years I have seen attitudes change in the medical community from opiates are only used on the dying in the early 90's to opiates are for anyone that shops enough and has a scar or DX. There are plenty of diagnosis that would cover reasons for pain after spinal surgery. I can't help but chuckle about a doc sayng that you back looks perfectly fine and there is nothing wrong with it. Aside from about 1/3 of the length of your spine being fused?
Hello!!! He never told you you might have pain the rest of your life from a bucket of hardware and fusing that much of your spine? Unfortnately being completely mislead isn't cause for malpractice and there is a penalty for taking a basball bat to your docs lower back.
Finding out why is a form of vindication, but it really doesn't change the philosphy of any PM doc as far as what they believe is the best way to manage your pain. 1 year post fusion, my DX was FBSS, The next year the hardware started snapping as it became more appareant the last fuson revision had failed again. It was vindicating to say I knew my fusion was never stable, But other than jumping back on the OR table for another revision with even worse odds of success, Knowing how many screws are broken really doesn't bring the comfort you would expect from knowing what's worng if it can't be fixed. How may fusion sights failed, How far the screws pull out of my sacrum and how many pieces of hardware have snapped really doesn't change a thing as far as my treatment plan and only gives me more to worry about, so I stopped wanting to get Xrays every year to see what was new and how bad things were progressing. I wouldn't have surgery again unless I rod shot out of my back or I lost neuro function at some point.
Pain meds are a simple answer, of course they relieve pain, That's what their designed for, However with so many POV when it comes to the benefit of opiates versus the negative aspects, not everyone uses the same methodlology.
What your describing would have been called work hardening back in the days prior to Oxycontin. OxyC was invented in 96. Prior to that, very few docs used pain meds to treat non malignant pain and those that did, you read about the DEA shutting down like DR Horrowitz in DC.
Work hardening sounds painful, but you have to do something to rebuild the strength, muscle , endurance you have lost in the lastyear. I've never had a PT push me harder than I push myself. It took over a decade, 3 failed surgeries, 3 PM Programs and about 12 different docs that all had different philosphies to get to where times had changed and opiates were available and i could combine everything that worked and I had learned over the years.
From long acting oral pain meds combined with other modalities I had found worked for me, I went to an implanted pump that delivers minute doses of opiates to where you have the most receptors. They can also add meds like marcaine, baclofen for spasticity, clonodine as a potentiator of opiates, but the small doses needed with a pump cleared my head enough to realize I wasn't going to spend another year in bed and a pump wasn't a cure, it was simply a way to allow me to function better and make a greater effort at improving my own condition. I had to accept the docs were doing everything they could to keep me walking with a junkyard of broken hardware and no bone growth from the last fusion attempt, to wear I felt I had to do my part too.
I actually feel guilty if I slack off. I'm going to hurt whether I spend the day doing nothing on the couch or I spend 6 hours at work or go to the gym for a couple hours. The pain doesn't go way, but you can distract yourself with things to the point it's no longer the only thing on your mind. When that's all someone ever thinks about, How they feel, How can it not be depressing and hard to look ahead or even consider their may be a light at the end of the tunnel if you follow it far enough.
Sittng around on the couch or in bed is a sedentary lifestyle that's so unhealthy, I had a heart atack on my 36th B day, 6 years ago. A life spent avoiding anything that might cause an increase in pain, watching yourself physically deteriorating isn't much of a life. Once it sunk in I was going to hurt just as much regardless of how I spent my day I started doing something about it. So I basicaly rebuilt myslef as best as I could using a combination of excercises, core stabilizing techniques, relaxation and distraction techniques I had learned from all the different programs I have been exposed too.
This allowed me to return to work part time, which is a huge help in dealng with the depression of going from workaholic to can't take a shower without a stool at the age of 36. I had the pump implanted in june of 04, it took 6 months to get the dose and med right and another year of excercise that no PT would have ever pushed me to do to rebuild what years of living only to avoid something that might cause an increase in pain had done to my body. I lost 40lbs, I got stronger although my back is just as much a mess as it was 5 years ago. I may bend over tomorrow and snap another screw. However using everything I have learned over the years, having a great doc that realizes you don't have to be dying to benefit from pain meds and the effort I made to change my life allowed me to Fly to Cancun back in June for my 20th anniversary and have the best week of my life.
I do think we have a responsablty to do everything we can to improve our own situation. Programs like this will teach you things you don't know and can't be fixed with a pill or stronger pain med. The first program I went to went something like this. Morning and afternnon PT, they feed you and you met with a nutritionist and learn it's role in health and treating CP. We had a PhD pharmacologist that explained the way meds worked. You see PM psychologist both in group and privately, you learn relaxation techniques like biofeedback, self hypnosis and guided imagry. There was art therapy, Ocupational therapy, all things designed just to keep moving from one point to the next and distract you from the pain. When your laying in bed, there isn't much to distract you so all you have is time to think about how much you hurt. When that time is occupied, you don't think about it as much.
Surprisingly, I only saw two people quit these types of programs and in the docs mind it was because they weren't given the meds they felt they needed or deserved. Not because they were asked to do more than they could. They pretty much keep you moving from one activity to the next whether it's PT, art therapy, an educational meeting or a relaxation technique. You meet with your doc, the shrink, some educators and somehow you get through 8 hours. If you have been in bed for a year spending 8 jours at a PM clinic would be a huge acomplishment and you need to get moving despite what meds a doc is willing to provide.
You would only be hurting yourself by remainng sedentary untill you find a doc that offers what you believe you need, whether it's opiates or more surgery or to be put in a medically induced coma. Ive been there too.
Programs like these basically shows you that despite what you say about being bed wridden, not being able to function, etc etc. You can somehow make it through that 8 hour day. Which is better than how you may be spending your days now. I spent alot of time laying on gym mats at these programs but that was OK, I was out of the house, out of bed and moving from one class or program to the next. The programs got me out of the house daily, had me excercising daily, I basically jumped through any and every hoop that might possibly give me some relief. They didn't have DI's screaming to push harder or suck it up, they simply showed you that you could do more than you thought. The benefit of getting out of the house alone is worth more than you may be able to see right now because of the pain.
You can look for another PM doc outside this group but just because a doc prescribes pain meds, doesn't mean that you getting all you could from a multi facated program that adresses more issues than doseing of opiates.
In the end I had to make that decsion to trade physical dependence on opiates for some quality of life. For me that was much easier to accept knowing I had tried everything and anything ever asked. Sorry to be long winded, But I was right where you were 8 years ago. Last June I was in cancun having the time of my life which I never could have imagined at 1 year post op or at two years when we discovered new broken hardware and lack of any bone growth.. Nope, I couldn't golf or water ski or do the things I would have done when I was 25 in Cancun, but I still had the time of my life. Having to change your lifestyle and accept you can no longer do everything you used too doesn't mean you can't still find pleasure in life.
When it's too hard to think about living another 10 years like this, focus on getting through the day and when tommorow comes commit to doing everything in your power to improve your own situation. Right now that may mean going through this program or finding another PM doc but I really don't see how going through a PM program is going to harm you in any way. The surgeon has done all he can do at this point. The rest is up to you and your PM docs and what your can take away from each experience whether you feel it's what you need or not. At the very least, your jumping through the hops and crossing off all the alterantives before getting to a place where your last resort is to be dependent on pain meds the rest of your life.
Just because they are available and some docs use them, doesn't make them the preferred method of managing pain when there are other methods and techniques to try.
There is hope despite how bad things may look now. There are lots of things to try that may offer some relief and when your bed wriden by pain, it doesn't make sense not to try anything and everything that may offer the slightest bit off relief. Pain meds will always be there and if you look hard enough there is always some doc willing to prescribe. Is it your only ioption, It's hard to say if you haven't exhausted every other avenue.
Take care, Dave