Baclofen pump - bad decision?

[ScottS4732]

Hello...

I am so grateful to find this forum - I am about at the end of my rope and I am hoping someone who has been through this before can share some wisdom about my current situation.

I ruptured two disks into my spinal cord a little over three years ago - these were removed but the long term effect of the trauma to my cord was severe spasticity in my legs which causes considerable discomfort and severely impedes walking. Also some sensory changes and reduced feeling in my lower legs.

Since my injury I have worked up to 180mg/day of Baclofen, 36mg/day of Zanaflex, 150mg/day of Lyrica and 30mg/day Percoset (I am very sensitive to this) for pain. With this regimen I was reasonably comfortable but my major complaint was the side effects from the oral meds, the most troublesome of which were constant drowsiness and sexual problems. Cutting down or eliminating these oral meds was the primary factor in my decision to get the pump.

For the last year or so I have been discussing the Baclofen pump with my pain management doctor. I had two trials - the first with 50mcg, which had little effect, and the second with 100mcg which reduced my Ashworth scores to nearly normal.

After the second trial I made the decision to go ahead with the pump and it was implanted on Feb. 25, 2008.

Before the pump was implanted my pain was pretty much under control with the Oxys. Although it was uncomfortable to do so, with a cane I could get around pretty well and walk fairly long distances without too much trouble.

The pump was initially set at 250mcg/day but that had basically no effect and I continued with the full load of oral meds. Upon awakening from the surgery I was unable to sense my bladder being full and urinate without a catheter - this took several weeks to completely resolve. I also developed a large hematoma around the pump which made it look as if I had a huge tumor in my side - this gradually resolved over a month or so.

Over the last three months the pump has been gradually increased to 1050mcg/day. During that time I have noticed both positive and negative effects - unfortunately, right now I would have to say many more negatives than positives.

Up until about 500mcg I didn't notice any difference in my spasticity or pain. Once the dose was adjusted higher than that I did begin to gradually notice my legs moving in ways they hadn't been able to before. However, even though objectively I could see that my legs were loosening, rather than decreasing the pain and discomfort associated with the spasticity actually increased. It also began to take more and more effort to walk the same distances that I could fairly easily cover before.

The last adjustment was about a week and a half ago, from 900mcg to to 1050mcg.

As my muscles have begun to relax and my range of motion has improved my pain level has increased and my mobility has drastically decreased. I can move my legs in a much more normal fashion (heel strike first when stepping,etc) but my legs get tired much faster - before I could get around the mall, etc. but now I can barely get around the house because after a few steps my legs begin to burn and hurt and lose strength. My drowsiness has increased to the point that I am prescribed Ritalin to stay awake at work. I have been unable to reduce my oral medications at all because eliminating even one Baclofen or Zanaflesx results in even more painful spasticity - this doesn't make any sense to me?

I have all kinds of theories about the pain - extreme soreness after being tight for so long, etc. but I have no way of knowing what is really going on. My doctors are confused as to why this would be and I don't think they really believe me but to this point my experience with the pump has been pretty negative which is depressing because having it implanted was really my last shot at making any kind of significant improvement in my situation. Instead of feeling better I am hitting the pain meds harder than ever and have become basically immobile unless I really have to go somewhere.

To make things worse, three or four days after the last pump adjustment I again lost the ability to sense my bladder being full and have had to go back to using a catheter. Not sure whether this is a side effect from the pump or the increased pain meds. I have another doctor appointment in a few days, I'll take that issue up with hi

Does anyone here have any experience with pump-related urinary problems or increased muscle pain resulting from decreased spasticity? I thought for years that if I could just loosen up my muscles my legs would feel so much better and so far it has had just the opposite effect.

I'm trying to wrap my head around what is going on here - thanks in advance to who can help, you effort will be much appreciated.

[janjam2]

Hi Scott:
I can definitely relate to the strangeness of pain after a Baclofen Pump implantation. I can also relate to the urinary problems after implantation. I’ve been experiencing both myself.


My Baclofen Pump trial was a good indicator that it would help my spasticity. I have C6-C7, and a T7-T10 SCI, incomplete since 1987. Believe it or not, after some extensive spinal surgeries I was able to regain some of my ability to walk (with a walker on good days) and I am still stuck in a wheelchair on others. However, I have had terrible spasticity since that time. No one and I mean no one can believe the miracle of my walking on any occasion that I am able. Me, I like to think that the man upstairs just likes me.

I had my second implantation of a Baclofen Pump done in October of 2007. The first pump had to be removed a year earlier, just eight days after implantation. I developed a MRSA infection in the implantation area that spread down the catheter and into the spinal fluid and of course up into the brain. I was comatose for four months afterward. My doctors were VERY, VERY reluctant to do a second implantation due to the MRSA.

Like you, when I woke up from surgery I had a problem with my bladder. I had previously always been able to use intermittent cathing to take care of my bladder. Ever since day one of the implant I have had a Foley catheter (urethral), because my bladder has lost all tone and it can no longer hold even 10 cc of urine. It leaks constantly. My doctor explained that the reason for the new bladder problems is the fact that some spasms are considered friendly. By that I mean the bladder does maintain some tone through (minimal) spasms. Since the implant removes spasms some people will develop a flaccid bladder. I have to admit that this development really upset me. I wanted some freedom from spasticity so that I could get out of a wheelchair (for the most part), and I traded it off for a Foley catheter. I am blind as a result of an accident with a myleogram. The my;epgram dye got away from the attendant when I started having a reaction to the dye as the staff was treating me for anaphylactic shock induced by the dye. The solution was accidentally allowed to shoot up into my brain and it caused immediate and total blindness. I didn’t want to be both blind and stuck in a wheelchair (had been wheelchair bound for almost twenty years). I felt like such a prisoner. I couldn’t go anywhere because I couldn’t see where I was going. I was stuck in that damn chair only able to bump around the house. I jumped at the option to try a Bacofen Pump to reduce spasticity and to try to remain on my feet for at least a little while longer. I know it isn’t fun to have to be cathed all the time, but where does the trade off work for you? Do you want the spasticity back, or do you want to put up with a neurogenic bladder? There are worse things in life as far as I am concerned. I’ll take the Foley catheter any day over the spasms that used to throw me out of bed and contort my body into pretzel shapes that surprised and horrified me (let’s not even mention the horror that my husband would feel when he would wake up in the night and find me all bent up and stuck on the floor writhing in pain).

I, like you, also experience far more pain in my back, legs and arms since receiving my pump. I also use Zanaflex four times a day in addition to the 711 mcg of Baclofen the pump delivers daily. I also take 600 mg of Neurontin four times a day and 100 mg of Lyrica four times a day to help with the nerve pain. I also take 10 mg of Nortriptyline four times a day and finally there is the 5 mg of Methadone four times a day to help with the nerve pain. Also for pain I take 10 mg of Norco ever four hours as needed, and then I also take 4 mg of Dilaudid every four hours (on the off hours from Norco), sometimes as little as one hour after the Norco for the breakthrough pain I experience so often. As you can see, there are many drug combinations that can be tried to help with intractable pain. I suggest you talk to your doctors about trying some other combinations for intractable pain as it’s obvious that the program you’re on now certainly isn’t working very well. I’m sure there are many, many other people who can tell you of hundreds of drug combinations that are out there to assist with the pain you’re suffering with these days.

I found it interesting to hear that you take Ritalin to help you stay awake during the day. I had never heard of Ritalin being used for that purpose. I take Provigil 200 mg. twice a day to combat the medication induced narcolepsy that plagues me. I find that since my pump went up over 650 mcg., I have had terrible trouble with sleepiness. I was almost willing to have my pump turned back down and to learn to suffer with more spasticity because of the sleepiness. I had had such good results with reduction in tremors and spasms on my left side for six months. I was thrilled. Then one day in mid April I woke up in the middle of the night and my left side was again completely withered and tremoring all over again. I was devastated. I had my pump turned up weekly for the last five weeks and had my Neurontin bumped up from 300 mg four times a day to the 600 mg four times a day that I take currently. This meds change seems to have toned down my left sided tremor quite well and has again reduced the terrible pain from spasticity.

I am grateful for the Baclofen pump. I hate to hear anyone complain about the bad side of the Baclofen pump. I don’t mean to sound crappy here, but you’re extremely lucky to be on your feet at all. You’re also lucky that you still work. Your problem is pain, not spasticity anymore right? So why are you feeling so angry about the Baclofen Pump? It sounds to me like it did its job just fine. You now have to find a new way to deal with the other type of pain.

My doctor told me that the reason I feel so much more genuine good old fashioned pain now is that the pain from spasticity is no longer such a huge factor in masking the regular pain of spinal cord injury. Face it, there is no easy answer when it comes to the spinal cord and its many problems post injury. No one ever told you it was going to be easy did they? I highly doubt it, LOL. If anyone did tell you that then why not post their name and address here and I imagine we can all get together and propose a lynching on wheels so to speak, ROFL.

I can understand your frustration in trying to find a way to deal with pain. My heart and prayers go out to you. I hope you find a reasonable solution to your new level of pain. The big key is to talk with your doctors and really try to be a part of your treatment plan. If your doctors are unwilling to listen then perhaps you aren’t with the right pain management group. Search your heart and see what it is you realistically expect for management of pain and spasticity and then go for it. You are the captain of your ship. No one else is in charge of how you feel. The doctors are there to help you; all you have to do is decide to take a proactive stance and seek out what it is you need in order to make your life livable.

Take care,

Jan

[Laurie290]

Dear Jan
I was glad to come by your message! I too have had an implant surgery to control my pain in Marc 2008.I am also experiencing relatively same things as you describe.I was back to clinic last week to increase meds.May need to go bk in another week or so as still not enuf relief.You are the 1st person I have come acrosss as having a catheter computer pump implanted! My body seems to be rejecting the steel box implanted into abdomen.It is constantly swollen & painful.I did need to have fluid drained off once,but they refuse to do it again for fear of infection.Yes my bladder is also constantly weak & have had a very nasty bladder infection about 2 weeks ago.I am still takin Dilaudid for breakthru pain.This was about my5th op on my back & pretty well all of previous ones had adverse results & was on so many narcotics since my accident in "June'99"that I was given this as a last resort.The high doses of oral meds would most likely have shut down major organs within the next 5 yrs if continued with such high dosing.Am now also combating depression,leg probs,bladder probs & decreases in all aspects of quality of life.The med of choice in my implant is Morphine.So very excited to find another experiencing an implant!
Laurie