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Old 10-03-2008, 09:44 AM   #1
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Unhappy Chronic Pain Rehab Program??

I had a spinal fusion of the T9-L5 one year ago. There were also other things done as well. If you have read any of my posts, you will know that this surgery has increased my pain ten-fold and have gone from a person who functioned relatively well with help (pre-surgery) to an invalid (post-surgery) who can hardly do anything. Even self care is exteremly painful. I'm unable to drive(even car rides are difficult). Cannot participate in any events with the kids. My surgeon says he can't find anything wrong. He said my PM isn't doing a good job, and maybe I need to be on stonger meds. He referred me to a PM doc (within the same medical system), but closer to me. I went there and he talked about this program that exists where my surgeon practices called, "Chronic Pain Rehabilitation Program". Has anyone heard of this? At first, I thought it might be a good idea. When I came home and read the brochure, it says things like;attempt to be consistent in responding to healthy behaviors, and in not responding to pain behaviors, and become free of addicting drugs, also, med.management to provide non-addicting treatments for pain,insomnia and depression and monitored weaning of narcotics, tranquilizers and sedatives. What is all this about?? It sounds more like a drug detox program to me! The dr. did not explain it to me this way @ all! I'm on Vicodin 10 4 -5 times a day, and have NEVER abused my meds. Why couldn't my surgeon tell me about this program in the first place? Why send me to another doc to tell me about a program that has a clinic in the very same area the surgeon practices?? I'm devastated. My surgeon told me pre-op that after surgery I would be able to "do anything short of competitive sports". Now I am wheelchair bound! At least before surgery I could walk without help, and drive short distances, and do more with the kids. One of the reasons I had the surgey was to not have to take pain meds. Now I take one more a day than I use to-and am still in agony. Someone please help me sort this out--Janiee

 
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Old 10-03-2008, 10:06 PM   #2
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Re: Chronic Pain Rehab Program??

Bless you heart - this is horrible and I do not know of anything to do except for getting medical advice elsewhere - maybe if you contacted your insurance company - I had a problem with a surgical mistake that cost me my career - adsolutely awful - all my friends wanted to talk about was sueing - well, you may get some money out of that but it does not give you your life or well being back - I was more interested in finding out who could help me
well, believe it or not, my insurace set up an appointment with a doctor in Houston Tx - they helped with getting big discounts on plane and hotel room, waived my deductable - I gues they figured it would be cheaper in the long run to find out what was going on??????
So turn over every rock - I know it is difficult when you do not have the energy to turn your pillow over to the cool side but we will be with you and this board has giving me more support than is imagineable
Good Luck huggs Aver

 
Old 10-04-2008, 05:46 AM   #3
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Re: Chronic Pain Rehab Program??

Hi Janiee,

I am another fellow spiney as well and as much as I am saddened to have you join our group - because you are suffering the wrath of chronic pain - I am happy to see another individual who can understand what it is like to suffer with this daily.

Personally, I would go to the first couple of appts and see exactly what it is. I would keep an open mind but that is just me. They may offer alternative medicine which is not necessarily a bad thing in my book. I think anyway to reduce my pain even if it is just a tiny bit without the use of pain medication is a good thing. Alternative medicine can include: accupuncture, massage, relaxation tapes, biofeedback, counseling, etc.

As far as the reducing meds thing - if any of this stuff reduces the medication that is wonderful but it is more important that you pain be managed which lets face it -- many times as a spinal patient it is not. I would highly encourage you to find a pm doctor who will take care of your pain meds and will not let you suffer. I sat for many months - year - without adequate pain control and now that I have it life is so much better not only for me but for my family.

Good luck, post often, and I am here for you. Welcome!!

 
Old 10-04-2008, 01:36 PM   #4
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Re: Chronic Pain Rehab Program??

Hi Janiee:

I just want to caution you a bit about this. Make sure you don't sever any ties with your current PM doc if you go to this program. My surgeon referred me to a doctor who had this type of philosophy and it was horrible. I felt traumatized by the experienced, and he told me that the pain was all in my head and that I needed to get over it. It is true that people with chronic pain need to learn to practice behaviors that help rather than hurt. This part is good. What you posted, though, sounds to me like a doctor who "doesn't believe in pain meds," when a medication regimen is the only thing that works for many of us. I think these doctors are not willing to consider ALL types of treatment that may help patients live a better life.

If I had stayed with the doctor who didn't believe in pain meds, I would not be well enough to be typing this message right now. I was lucky and was able to go back to my other doctor, and because I was able to establish a medication regimen that works for me, I am doing laundry, cleaning the house, and all sorts of things that I could not do before. Most of us here do not abuse our meds.

I don't want to tell you which treatment is best for you, but I just wanted to give my opinion and ask that you proceed with caution. I hope this helps.

 
Old 10-05-2008, 09:39 AM   #5
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Re: Chronic Pain Rehab Program??

Thank You to all who replied to my post. It's nice to know that someone out there cares! To Toones, a very special thank you!! I don't think this is a good program. Did I tell you that it lasts 3-5 weeks, and some pts are outpatients and go everyday,M-F. Others, have to stay there that length of time. Also, the doctor that suggested this to me is part of the same health care system that my surgeon is in. They are not going to admit if something is wrong. One of the members of this site suggested that maybe I need a LA med, or I was thinking, maybe the fentynel patch with occasional meds for BT. She suggested a dr., but again, he is also in this same medical system. So, tommorrow I am going to start looking for a PM person outside of this system-should have done it long ago. (My current PM is not doing a good job). Also, have an appt. in three weeks with another Ortho-again, not connected with this system where I've had no luck. Again thanks so much guys! I really do appreciate it. Hope everyone here is having a pain-free Sunday. Will keep you posted-janiee in Cleveland

 
Old 10-05-2008, 11:08 AM   #6
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Re: Chronic Pain Rehab Program??

Hi Janiee,

I went through a similiar program at Lake Hospital Systems long before I started seeing a real PM. At the time they were not as strict as what you are mentioning above. That program was to teach you some gentle exercises to keep moving, emotional support to cope, learning how or when to stop doing things that make your pain worse etc.
They did not take anyone off medications.

This program scares me. yes some folks can live without pain medication using holistic measures but the way it seems to be emphasized it's like saying we are nothing but addicts or something.

I'll be honest, I'd see a new PM if you can. I have seen many in our area and find Dr. Demangone (has offices on east side and west) to be the most realistic and sympathetic. Maybe a second opinion with a new PM would be better suited for you? Not sure whom you saw, but certainly doesn't sound like something I'd ever do!

Long acting medications may be better suited for you as a whole and of course better on your liver.

Just because it was suggested you go through this doesn't mean you have to. Is this the only treatment this PM is offering you?

Kissa
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Old 10-06-2008, 09:40 AM   #7
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Re: Chronic Pain Rehab Program??

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

Last edited by Shoreline; 10-07-2008 at 08:10 AM.

 
Old 10-26-2008, 08:46 AM   #8
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Re: Chronic Pain Rehab Program??

As soon as you said, "Chronic Pain Rehab Program" I said to myself...this person is from Cleveland. LOL! It was suggested once upon a time (by my surgeos) that I attend this program but luckily I got in with a fabulous Chronic Pain Doc at the CCF Main Campus. He is amazing, thoughtful, caring and highly qualified. I have heard that it does wonders for people but it just wasn't for me. They try a variety of treatments from medicine trials to physical therapy to psychological treatments. If you are in the horrible pain you speak of I would highly suggest going to this program.

Good luck with your endeavors!!!
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Old 10-26-2008, 10:12 AM   #9
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Re: Chronic Pain Rehab Program??

Mcgirl-This program was not for me either. I finally found a great PM Doc in the MetroHealth Care Systems. In fact,he is the Director of PM @ Metro. He came here a few years ago from Arizona. He diagnosed me with Failed Back Surgery Syndrome. I will never go to CCF again. Now, I have hope....janiee

 
Old 10-26-2008, 04:19 PM   #10
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Re: Chronic Pain Rehab Program??

I am sorry you did not find what you needed at the CCF like I did but am happy you finally found a great doc. We are fortunate here in NE Oho to have so many fantabulous docs and hospital systems. I can't think of another place in the county that I would rather be for CP treatment!

Good luck with your doc. My prayers are with you an all other CP patients!!!
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Old 10-26-2008, 07:38 PM   #11
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Re: Chronic Pain Rehab Program??

Dave - Hope I'm not highjacking this thread but: I've heard you speak of the reahabs you've gone to for years on this board and I'm very, very interested in finding a program like the one you described. Can you give me the name of the rehab? I know you are in the Tidewater Virginia area, I'm in Central Maryland but am willing to travel. Can you name names? Thanks - Memere (KathyMac)

 
Old 10-27-2008, 11:00 AM   #12
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Re: Chronic Pain Rehab Program??

The Cleveland Clinic has one similar to the one he described. Check out their website (ccf.org) and go to the pain management section. It is specifically called the "Chronic Pain Rehabilitation Program."
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Old 03-09-2010, 09:08 AM   #13
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Re: Chronic Pain Rehab Program??

I too would like to know a good program or doctor. I am in Northern, VA. I have DDD, spondyliolisthesis grade 1, scoliosis, disc dessecation, Chiari 1 malformation, reversal of the cervical lordosis, carpal tunnel, and fibromyalgia. I'm in pain on a daily basis, some days more than other. My PCP is wonderful, but not doing quite enough, or I guess not listening as well as I need him to... Thanks!

 
Old 03-09-2010, 12:21 PM   #14
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Re: Chronic Pain Rehab Program??

I have a great PM he is Dr. Thomas Nguyen of the Virginia Spine Institute. Check them out at SpineMD.com. I was able to make it to Japan to see our son in the Navy and our new granddaughter because of his help..

 
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