Join Date: Jun 2003
Re: chronic pain
Hi Missy, Like Brian said, If your doc doesn't do pump implant or management, he's never going to offer you a pump. Medtronics certifies docs to implant and manage and will be happy to give you a list of docs in your area that are certified.
I had my pump implanted in june of 2003 after living with the pain of 3 failed surgeries for 10 years, The last was a fusion revision of my entire lumbar spine and that failed too,, I've broken this set of hardware and failed to fuse. Every few month another screw head breaks off or another screw backs out of the whole and other than revising and lengthening the fusion again, all they can do is attempt to manage the pain.
As far as the process goes, A certied doc loking to follow the medtronics guidelines will first do a psych eval and see if your suited for a pump. Are expectations relistic, that type of thing. Pumps are just tools, They aren't miracle devices that manage pain nothing else can. I basically get the same relief as orals, I just don't have the side efects i did with orals which allowed me to be more proactive inmy own reovery and life. The benefit is less side efects for equal or better relief. No matter how much medication they pump into me, it doesn't make an unstable fusion stable, and it doesn't repair broken hardware. Where I found the biggest benfit was once the pump is put in and my head cleared from the oral fog, I was motivated enough to start exercising and after 8 months of really pushing myself harder than any PT or doc ever asked I was able to return to work part time.
Just getting out of the house and being distracted from the pain is the best medecine I ever found. Excepting that the docs are doing all they can and how you decdide to live your live is a realization eventually you have to come to. Being willing to submit to any med or any procedure isn't the same as worjking daily to improve your situation, whether it's excercise, PT or simply being productive. The excercise does wonders for depression and all the problems associated with living a sedentary lifestyle. I had a heart attack on my 36th Bday becayse I was too young to be in that much pain too. Now I'm 43, been doing the PM thing since I was 27 and had my first surgery. The meds available now didn't even exist back then. I came home from a 6 level fusion with 5 mg percs because 10 mg percs didn't exist.
It's not so much the day to day existance that's tough to deal with, but knowing your not getting better or your will continue to get worse if you don't do anything but swallow whatever the pill of the day is. No med rebuilds lost strength, endurance or muscle tone, No med makes facing a life of pain any easier. Find a good PM psychologist that works with your doc, find a Pump doc that's part of a multi faceted PM center that can offer more than just a script or an injection and doesn't try to slam every square peg through the perfect round whole all CP patients are supposed to fit into and most importantly, find what it is that you can do to iprove your own situation. As mCrazy as excercise sounds when you hurt, I still get the endorphin reliease, I feel beter if I know I have done everything I can too improve my sitiation. I'm the only person grading my own effort.
The big advantage of a pump is having a clear head and the motivation to do something about your circumstances. Although orals may makeliving with intolerable pain tlerable, They alsomake living an intolerable life tolerable. If sitting around waiting for a doc to fix you isn't the kind of person your were before, why do sso many patients have that point of veiew now. It's kind of like wanting toloose wait but thinking you don't have to diet or excercise if your doc would just prescribe some diet pills. Pills don't replace the effort neded to change ones life.
It's up to you to make the most out of what you do have. The glass is either half empty or half full. You can dwell on the pain that meds simply can't cover if your have a mechanical problem that can't be fixed. Or you can focus on all the things you still can do. I would much rather walk in pain than sit in a wheelchair numb to all pain and all pleasure.
I look at things as the doc is doing everything he posibly can as far as meds, procedures, surgeries, devices, training and educating me as far as CP, and the rest is pretty much up to me. I could crawal into bed or a wheelchair and avoid any and all things that might cause more pain, But if your going to hurt no matter what, why not try to squeeze some beneficial things like excercise, stretching, distacting yourslef by getting out of the house, etc etc. I hurt whether I workout or not but If I give up and stopped moving I would simply deteriorate faster. I was watching one of the TV docs talk about major recoveries about 2 weeks ago and he said for every day someone spends in bed following surgery or an injury, it takes 10 days to recover from that sedentary life. If you have lived a very sedentary life for the last year trying to avoid anything that might cause pain, then I gues that equates to 10 years of recovery time.
I've certainly had to work my butt off to get back in the shape I once was, but I atribute most of that to the pump clearing my head to the point where continuing to live that lifestyle was no longer exceptable. I couldn't feel good about myself if i wasn't doing everything I could, I didn't feel good about myself when I was over weight, out of shape and simply waiting for a doc to fix me. We all have a choice of sitting around and doing nothing but complain about the med out doc won't try or we can take some reponsability for our own situation. If your don't excercise, smoke, or knowing do things that aren't healthy won't improve your situation, It's muich harder to except that this is as good as it gets. My poump relieves about 50% of the pain, Im at a point wherre I simply won't except being impaired and unwilling to paticpate in anything that may cause pain.
I'm going to hurt whether I excercise or not, I'm going to hurt whether I leave the house or not and whether I work part tme or not.
It's been tough finding a balance between activity and pain control, but I do have control over how strong my core mucles that support my back are, I have control over what I eat and how much I choose to particpate in life. I also decide whether my glass is half full or half empty. The glass is flled to the same spot and yet two different peope an see thimgs entriely differently. You can focus on everything you can't ddo or you can focus on everything you can. I took my first vacation in 18 years last summer and had a blast in Cancun, Having something to look forward to like going back is also a key to learning to live with CP. Without something to look forward to or the abilty to say I'm going to at least make it back to mexico one more time is how I live with pain that can't be managed.
I refuse to live my life. sitting around doing nothing and avoidng things that that might cause more pain. Yes I pay for excersing , I pay dearly for working but i'm going to hurt mors at night, , I'm going to hurt more if I do nothing but sit on the couch all day, so I don't really see excercise as causing more pain, I would be just as miserable if I didn't but I wouldn't have any of the benfits of excercise if I stop. Simply knowing I'm doing all I can helps with the depression, having your head cleared from the opiate haze helps, and doing something that allows you to interact with other people aside fromposting about howmuch you hurt. In a 110 hour day at work I never mention how much I hiurt, I stay buisy and distarcted and don't pay for it till I sit down at he end of the day. It's amazing how much better you feel when you have something more to talk about than what you might have seen on TV for the 8th time. It's up to each of us to decide how much we allow the pain to consume our lives.
If you put your pain before all other things it's hard to see anthing but the pain. The bottomline is your still the same person you were prior to getting injured. Whether you have the abilty to think about somethng other than your own circumstane has alot to do with how happy your would be with a pump. If you expect complete and total relief with no effort on your side, most would predict you wouldn't be happy with the pump. If you see the pump as a tool to deliver meds in a more efficient way and understand the limitations of medication, whether it's the abilty to relieve pain or the trade as far as side efects, are still things you have control over. I'm not wiling to sedate the rest of my life away so the pump wa the best choice I could have made. I've worked my tail off to improve my own situation and it has paid off. I still work out every day I don't go to work. I actually feel guilty if I don't do my part and allow myself to get fat and lazy again. I don't see how it would be posible to feel good about ones self if somebody isn't making athe effort they need and simply expect the doc to keep increasing meds, prescribing meds for side efects and then meds for the side effects from the meds to treat the side efects.
Your attitude and how much effort you make determines the outcome of a pump more than twhich med they sellect a opump to deliver. Going to a pump was pretty much like startingover, It took 6 months and 15 adjustement just to get back t whthe amount of erelief I had with orals and it takes alot of trust that your doc is going to continue t work with you. For me the decsion came when I simply couldn't tolerate the side efects of orals, There were nomore non medication choices to try, I had tried every med long before anyone even considered gettng FDA aproval for antidpressants or anti convulsant to treat pain. Pain has been arond and managed loalo longer than oxycontin has been around and some of te none opiate mthods do work,. It's just a matter of combing the right modalities that worrk for you and having reasonable expectations from medication. Ater 11 years, a percocet isn't going to give you the relief you had the first time you took the med. Learning to except that meds have limits and you have a responsability when it comes to your own well being has alot to do with how satisfied you will be with a pump.
Good luck, Dave