View Full Version : To Pump or Not to Pump
I have a friend who is strongly considering getting a subcutaneous Baclofen pump put in. I welcome your comments.
Author: Nick Danger
Subject: Baclofen Pump for Pain Relief
Date: 8/4/01
A couple of weeks ago, I had my first test to see whether I would be a candidate for a baclofen pump. I suffer from tremendous amounts of pain caused by muscle tightness, which in turn, is caused by "tone," which I believe is a form of spasticity. My muscles become unbelievably tight, primarily when I'm in bed. When laying down, I am in EXCRUCIATING pain and can only get through the night by taking meds SIX TIMES during the course of my 10 hours in bed. The tight muscles compress over my sciatica nerve, and also mash my bursa on my hip. And so on... its brutal!
I have tried every MED out there, and everything has given me only a slight amount of temporary relief at best. All of the medication that it takes to get me through the night leaves me exhausted and woozy the next day. I have tried pretty much every treatment out there -- physical therapy, acupuncture, massage therapy, and everything else, and nothing put even the slightest dent in my pain. No amount of stretching has worked either. With that in mind, my doctor and I determined that the muscle tightness was due to my central nervous system, rather than my time in my chair and other factors. My body is below the waste is so tight that it feels like armor. Since I have only responded to certain types of meds, and not at all to anything else, my doctor suggested that what I may need is a baclofen pump.
It's an all-day test conducted while lying in bed. I was given a test injection of a minute amount of liquid baclofen directly into my spinal fluid. Before that, my doctor did a little range of motion check on my legs to get a baseline. Thirty minutes after my injection he did the same thing and the difference was amazing. I was loose, and my pain had been practically eliminated already. When he did the same thing an hour later, I was in no pain and we were already convinced that I responded so quickly to his test that the rest of the afternoon he only checked me one more time. It was determined that I did respond to the injection and was a candidate for the pump. My head was not woozy (like it always is from the meds), yet that tiny amount had completely loosened me up and taken away the pain. It was a fraction of how much I normally take orally and was infinitely more effective.
I should mention that, even though I am a C-4 C-5 quad, I am extremely incomplete, and am capable of standing and taking steps while holding onto somebody. It's much harder to do nowadays, though, because I'm on so much medication -- it really takes away a lot of what I call my "super" powers. I am also able to, when in bed, pull my legs up while laying on my back, which allows me to bridge my body up and scoot side to side across the bed to put me in a position to roll onto one side or the other. I have to be able to do this because I cannot last more than an hour or two without changing positions.
The injection made that impossible for me to do. In fact, several hours following the injection, when it came time to transfer back into my wheelchair, which I normally do on my own or by standing and walking with assistance, I could not come close to doing it and had to be assisted. Then when it came time to drive home, I found that I could no longer lift my legs to transfer into the driver's seat of my van.
The point of that is that for anyone like myself who does have some use of their legs and depends on it, there could be a potential problem using the pump. I should point out, however, that my doctor told me that we can adjust the level of baclofen from the pump to any amount. I believe that, at the very least, I will be able to stop taking all of my spasm medication and use the pump to a degree that cuts my pain significantly.
I am scheduled to meet with a neurosurgeon a week from Monday, August 13, at which time we will discuss surgery to implant the hockey puck sized device. I will keep you all posted as things develop. Any questions?
Nick
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Hi, Nick.
If I understand correctly how this procedure affected you, you need a certain amount of muscle tone to stand, walk, and transfer. The Baclofen that was applied to your central nervous system knocked out the tone and spasms 100%. The neurosurgeon believes that he can control the amount of the Baclofen so that you will be left with some tone so you can do your own transfers. Let me know if I am not getting this correctly? I was thinking that because your problem is mostly at night when you are trying to sleep, would it be possible to turn the pump on when you go to bed and turn it off when you wake up?
I also recall talking with a neurosurgeon regarding the Baclofen pump and he explained to me that since I use some of my tone for walking, it could be affected by the Baclofen pump. In your case, after the medication was applied to your spinal cord your legs became like wet noodles.
When I was involved in the Elan clinical trials in 1995 I was given the sustained release formula of 4-AP. It decreased my tone, spasms, and pain by 80%, and also improved my muscle function including walking. I have no idea when Acorda, or if Acorda, has any plans to release the time release 4-AP.
P.N.
mikek
08-07-2001, 06:26 AM
PN I am a t2-3 incomplete and had all the symptoms
that you describe.The extreme tightness in my hamstrings and quads that at times feel as though they are working against each other. I tried the baclofen pump in 1999 and it didn't help me with the stiffness and had it removed 6 months later. They didn't let me get up and try walking during the test. Also the test is only given with 50 mg. and then 100 mg. if needed. Getting the pump set to the perfect amount of medication it delivers is a trial and error thing until you feel good. Too much and it will have side effects. I had trouble breathing at one point. Consider taking the test again and try walking. At night I sleep on my side in a fetal position as when I do a full leg extension my leg muscles contract so strongly. However, I met others that have had great results. There are no 2 incompletes that are completely alike.
I appreciate the feedback and your experiences with the pump. Worst-case scenario for Nick, if the pump doesn't work, he can have it surgically removed in six months.
PN
mikek
08-08-2001, 06:44 AM
When I made the decision to have it removed,
I then had to go through a long process of having the baclofen pump systematically lowered for the medication it delivers until I reached ZERO.
Before having it implanted make sure that it will probably work for you.
I still have some discomfort at the site where
the pump was removed.
Mike
Chris Chappell
08-08-2001, 11:36 AM
I am not as incomplete as you guys by far but I do suffer from very similar spasms. The one thing besides baclofen (I hate meds)which seems to help is intense physical therapy. On the days where I spend 4 or 5 hrs of stretching, standing, gaiting etc. My legs, by the end of the day, are loose and comfortable. And typically I sleep like a baby.
What I'm looking for is an ex-marine physical therapist. I think that nearly everyone in the sci comunity underestimates the benefits of aggressive physical therapy.
Just an idea. May be worth a try. http://sci.rutgers.edu/forum/images/smilies/tongue.gif
Nick,
It sounds to me like you have spasticity much like mine was for many years. Mine gets much worse after laying down. I also use the spasms to pull my legs to my chest to roll and get out of bed. I do know that my spasms do help me as much as I hate them at other times. During cold weather, they can wake me from a sound sleep by arching my back, driving my head into my pillow, and the heels digging into the bed until my legs go straight out and in whatever direction they wish. This can happen several times through the night. I have dealt with it for 17 years. They are violent. Each winter, I contemplate quality of life issues with the addition of these to my already bad back, hip, armpit, foot, calf and knee. Each winter, I somehow make it through.
I do know that I personally only met one guy who had spasticity worse than mine. I was evaluated in Phoenix and again at Craig Hospital in Denver for a pump in 1991. At the Craig, the evaluator told me that he eliminated most people. He said I definitely qualified. I asked him if my spasms were the worst he had ever seen and he said that he had seen worse. I was ready to do a pump ten years ago before FDA approval. I decided against it. I just am not a believer in allopathic medicine. I have seen too much go wrong. I was also told the spasms would get better over time by an old-timer on the old Fidonet BBS (before internet days). They have settled down slightly, though winters here, even in Phoenix are brutal. The other reason I don't get it, is that it would eliminat the only relief I get for my back pain through manipulation. I found a doctor who uses very gentle techniques, which have helped my back tremendously. I think this relief of back pain would be eliminated with the pump.
I do know that I never lost the amount of sleep that you claim to due to spasticity. Or had the kind of pain you describe. I can't put myself in your shoes, only tell you my experience.
From what you say, it sounds like the Pump might be your answer. They can computer program these devices so that you can have as much or as little Baclofen as you want. IF I were to get one, I would boost my Baclofen at night and limit it during the day when I am more active. With a little trial and error, these can greatly improve your quality of life from what I hear.
ANY surgery under general anesthesia should not be taken lightly. I understand your circumstances and support you in your decision. I know you will be thorough and ask the right questions. Make sure you get somebody with alot of experience and good track record of putting these things in. Catheters can kink, placement can be wrong, and the pumps can mechanically fail no matter what you are told.
I know that feeling of no spasticity. I used to get it during my drinking days. I could not do tranfers at all once I got to a certain point. Spent alot of time on the floor after episodes of heavy drinking. Alcohol was a great temporary solution but the long term effects were going to kill me. But I did have alot of fun and have tons of absolutely unbelievable stories from my drinking days, which I consider one of my other lives within a life of many lives.
Anyway, keep me posted and get that website straightened out. I would like to participate as much as possible but it just ain't happening. I beginning to wonder if maybe I am not meant to be there.
Your buddy in tremors for now,
Keith
It sounds to me like you have spasticity much like mine was for many years. Mine gets much worse after laying down. I also use the spasms to pull my legs to my chest to roll and get out of bed. I do know that my spasms do help me as much as I hate them at other times. During cold weather, they can wake me from a sound sleep by arching my back, driving my head into my pillow, and the heels digging into the bed until my legs go straight out and in whatever direction they wish. This can happen several times through the night. I have dealt with it for 17 years. They are violent. Each winter, I contemplate quality of life issues with the addition of these to my already bad back, hip, armpit, foot, calf and knee. Each winter, I somehow make it through.
I do know that I personally only met one guy who had spasticity worse than mine. I was evaluated in Phoenix and again at Craig Hospital in Denver for a pump in 1991. At the Craig, the evaluator told me that he eliminated most people. He said I definitely qualified. I asked him if my spasms were the worst he had ever seen and he said that he had seen worse. I was ready to do a pump ten years ago before FDA approval. I decided against it. I just am not a believer in allopathic medicine. I have seen too much go wrong. I was also told the spasms would get better over time by an old-timer on the old Fidonet BBS (before internet days). They have settled down slightly, though winters here, even in Phoenix are brutal. The other reason I don't get it, is that it would eliminat the only relief I get for my back pain through manipulation. I found a doctor who uses very gentle techniques, which have helped my back tremendously. I think this relief of back pain would be eliminated with the pump.
I do know that I never lost the amount of sleep that you claim to due to spasticity. Or had the kind of pain you describe. I can't put myself in your shoes, only tell you my experience.
From what you say, it sounds like the Pump might be your answer. They can computer program these devices so that you can have as much or as little Baclofen as you want. IF I were to get one, I would boost my Baclofen at night and limit it during the day when I am more active. With a little trial and error, these can greatly improve your quality of life from what I hear.
ANY surgery under general anesthesia should not be taken lightly. I understand your circumstances and support you in your decision. I know you will be thorough and ask the right questions. Make sure you get somebody with alot of experience and good track record of putting these things in. Catheters can kink, placement can be wrong, and the pumps can mechanically fail no matter what you are told.
I know that feeling of no spasticity. I used to get it during my drinking days. I could not do tranfers at all once I got to a certain point. Spent alot of time on the floor after episodes of heavy drinking. Alcohol was a great temporary solution but the long term effects were going to kill me. But I did have alot of fun and have tons of absolutely unbelievable stories from my drinking days, which I consider one of my other lives within a life of many lives.
Anyway, keep me posted and get that website straightened out. I would like to participate as much as possible but it just ain't happening. I beginning to wonder if maybe I am not meant to be there.
Your buddy in tremors for now,
Keith
Reply 2
subject: Re: PUMP TESTIMONIALS
from: Nick Danger
date: 8/12/01
Hello Keith and everybody! I am really trying to get the bugs out of this web site. Apparently it is not so simple a task to put together a web site and have it run perfectly. But trust me, I'm on it! Keith -- how were you able to post this? Last time we spoke, you were UNABLE to post.
Now, a few points of clarification regarding my condition and my candidacy for the pump...
The form of spasticity that I suffer from that is causing me my problems is almost entirely TONE, not the type of lurching spasms or what I call "cat stretch spasms," where it is as though somebody has a little voodoo doll of you and contorts your body. What takes place with me is the tone causes certain muscles below the waste to contract and tighten (primarily those that attach to the greater trochanter on my right hip). They do so to so great a degree that they are tugging hard -- I mean REALLY hard -- on all the insertion and connection points. As they do this, they are crushing the sciatica nerve, the bursa on my hip, and God knows what else. My greatest pain is all around the greater trochanter. If you look at anatomy charts, you'll see that there's a great deal of foschia (connective tissue) in that region that is extremely tight from my tone. There are also an amazing amount of different muscles that run all throughout that area and attach to the greater trochanter. This includes some that originate or connect or something (my version of "fuzzy math" -- fuzzy anatomy) to the spinal column.
My test to determine candidacy for the baclofen pump showed that something like 50 micrograms of baclofen (a tiny amount, especially when compared to the amount of oral baclofen I take) injected into my spinal fluid completely calmed all the tone and relaxed the muscles, taking away all of my pain. However, it also took away the use of my legs. Keith, unlike you, I do not rely on spasms to lift my legs -- rather the strength and return in my legs and stomach muscles. I am extremely incomplete and am capable of doing so. So now I know that I am a candidate for the pump, and fully intend to have it implanted as soon as possible. I meet with my neurosurgeon (finally -- I've waited three weeks for this appointment after a three-week wait for the test) tomorrow to find out when I may have the surgery. The sooner the better -- my pain is worse practically every day. I don't know why. It's bad -- I mean REALLY bad.
As one of you guys mentioned, it will be trial and error to determine the proper amount to provide me with the necessary balance of pain relief and leg use. You can program the pump with about 10 different schedules throughout the day and night, and I will definitely turn the juice up at night and down during the day. However, I will start at a very very low dose, and if I still have too much pain at night I can supplement with oral medication. It's better than injecting too much liquid baclofen initially to allow me the use of my legs, which is vital to me. At least I will be able to have somebody sleepover during those first few nights or so to help turn me while I'm figuring it all out.
Finally, Keith, there's something I would like to address that you have mentioned in the past. That would be your distrust of doctors and surgeons. I understand that it was some bonehead surgeon that paralyzed you during what should have been a slam dunk standard procedure. And I guess you've had problems with the medical profession since then. While I have had a few problems with a couple of doctors or so since breaking my neck, I've got to tell you that both before and since my accident, I have had almost exclusively good results from good physicians and surgeons. I have had everything from rotator cuff surgery to spinal fusions to urological surgery, even a toenail partial extraction. Everyone of them went according to plan and significantly improved my condition and eliminated problems. I think you need to give them another chance, but of course be selective in what physicians you let advise you and work on you.
I will keep you all posted on what transpires as I proceed with my quest for pain relief.
Best wishes, Nick (Stephen L. Crowder AKA Nick Danger)
Hello everybody. This is the first opportunity I've had to get on my computer since my surgery last Friday. The operation went well, however I have had complications, the worst of which was spinal fluid leaking which has caused really bad headaches every time I try to get up in my chair. Consequently, I've been stuck in bed since returning from the hospital Saturday. So if anybody has tried to e-mail me, this will explain why I have not responded. My friend Lori and my neighbor Elaine have gotten me through all of this -- Lori has been unbelievable. She has practically not left my side the entire time. The nights have been rough -- being forced to lay on one side day and night, with a variety of pain issues. I've taken an unbelievable quantity of medications, but blessed with good genes I suppose, I've still been able to stay somewhat coherent.
Lori got me up about 10 minutes ago in an effort to try to see whether I am still experiencing as severe of headaches as I was earlier. I spoke with my surgeon this afternoon and he told me that until the site of where the tube that he inserted in my back to act as a reservoir (to provide medication to my spinal fluid) seals, I can expect to continue experiencing these headaches. Meanwhile, because the pump was set at so high a level at the time of surgery, I am unable to use my legs as I did before, and have to be completely assisted with all transfers. Worse, I cannot move my legs in bed -- not an inch -- and Lori has had to get up throughout the night, night after night, and reposition me because I can only lay in one position for so long before pain and spasms become overwhelming. As grim as all this sounds, I've been through worse and can handle it.
We're going to do everything possible to get me into my doctor tomorrow to adjust the pump implant so that I can at least use my legs and return to using more oral medications to deal with the pain. Of course, it was that pain and the constant use of oral meds that was the reason I got the pump in the first place. This will take some time and some fine-tuning I believe, before I'm able to come up with a compromise between the pump and the oral meds. So... for anyone who's written me in the past week, this explains why I have not returned any e-mails. It looks like I have about 200 of them stacked up, so when I am able to put in some wheelchair time, I'll have a little (not so) light reading ahead. I promise to keep you posted whenever I can, and please do not worry about me -- I'm in good hands and things could always be worse. I knew this would be tough (not this tough), but I also knew the only way out was through. And like I said -- it could be worse -- I could be a Padres season ticket holder.
Cheers, Steve AKA Nick
Hi PN,
My husband had a baclofen pump installed about a year and a half ago. He's C3-C4 and was able to walk. Several months before he had the pump installed, the pain had gotten so bad that he really couldn't walk anymore and was really miserable and dependent.
The pump installation went well but it took a full 2 months before they got the dosage worked out. He was even worse off pain-wise than he was before the surgery. (I think part of the problem was the way the oral baclofen was ramped down before the installation, but who knows.) It had been so long since he had walked that he was afraid it would take forever to get back to where he was. However, once he was feeling better his walking came back better than ever within a week! He now walks with a cane whereas before he walked with a crutch.
Within a few weeks of the installation, morphine was added to the mix. And about a year after installation bupivacaine (sp?) was added. There's still occassional tweaking but things are going well.
I just wanted you to know that it's not unusual for things to get worse before they get better. Don't give up on the pump yet. My husband is so much better now without all that oral pain medication. I say that the pump gave him back his personality.
Bee
Hi, Bee. I just want to clarify that this was an e-mail which was recently sent to me from my friend Nick aka Steve. I went ahead and forwarded your comments to him in an e-mail. If he responds with an update, I will post it on this forum.
Good luck.
PN