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Thread: Baclofen pump trial monday

  1. #1
    Senior Member McDuff's Avatar
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    Baclofen pump trial monday

    I am setup to go in for the test/surgery on monday 8/16/04. If the monday shot test shows improvement I stay in the hospital and get the pump implanted on tuesday morning.

    My spasticity has been on a long slow buildup ever since the wreck. When I got out of rehab in december, I could push my legs around fairly well just tightness in the adductors(sp) keeping my legs together a bit. As of now I can't even get them out of bed by myself. Can't bend them by myself, hell can't do anything with them.

    At first no spaz meds at all. Now built up to/tried Tyzanidine,valium,baclofen,4AP and for pain is hydrocodone and tramadol. Just barely keeping my sanity as I sleep in 2hour chunks only after a med dose.

    Kept thinking we had found the cause of spasms/spaz all along the way, uti's, big toenail infection, bladder stone removal all to no avail. I keep pinning my hopes on the "next" fix. I am just about "out" of fixes, I sure hope this does it.

    I have searched and read all the past posts on pumps and like what I read. I also saw Dr. Wise's facts, including the one saying all this fails to help people 15% of the time. Man I hope that ain't me...

    Does anyone have anything new to say about the pump, good, bad or indifferent?

    Haven't gotten a lot of info from Doc about what to expect as far as recovery time. I will be hitting him up, just wondered what the real world experience is.

    Any and all info appreciated as I am still a little leery of having this inserted but if it works, hell yeah.

    Thanks, McD

    "Rather be ridin' than rollin'"

  2. #2
    I hope this works for you. The surgery is not too difficult, but it may take some time after the implant to find the right pump adjustments for your needs. Don't give up, and continue to work closely with your team to get the adjustments right.

    It is very helpful to keep a detailed journal (times and activities and spasticity during those times) so you can use this with your team in making adjustments.

    (KLD)

  3. #3
    Have you gotten up on the Medtronic website? They have tons of useful info there.

    My son has had wonderful success with his pump; it's been about 4 years now, and haven't had any problems at all with it.

    _____________
    If we have no peace, it is because we have forgotten that we belong to each other. - Mother Teresa

  4. #4
    Senior Member McDuff's Avatar
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    KLD - thanks for the kind words. Hadn't thought of a journal, good idea. Might reduce the amount of adjustments.

    Marmalady - I have not gone to their website, I will now. Glad to hear it working for your son. Question: how often does he go in for a refill?

    McD

    "Rather be ridin' than rollin'"

  5. #5
    Refills will depend both on the drug concentration used and the actual daily dosage you get. It is difficult to determine refill frequency until you get on a stable dose. It can range between every 3 weeks to every 3 months.

    (KLD)

  6. #6
    I remember spasms. Stuff was brutal kid. I was on a grip of orals. One that began with a "D" worked sorta. It was hardcore though. I got the pump and was straight as hell. My catheter broke and it was hell, but they put a new cath. in with a different technique and I'm straight. Mines gets changed every 120 days. I'm on the very lowest dose, but my legs were wild before...



    My phat site (Not SCI related)

  7. #7
    Senior Member rdf's Avatar
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    McDuff, I hope this works for you. It literally saved my life. My spasticity was so bad I couldn't do anything.

    Transfers were always a huge undertaking, with me landing on my butt more often than not due to spasms. Had to bungie cord my feet down on my foot rests, etc. Major pain.

    I got the baclofen bolus test shot, and it was unbelievable. I almost fell out of my wheelchair after the test shot, not because of spasms, but because of NO spasms, lol. I wasn't used to not having them, my legs and stomach were spasm free, and I had to adjust myself in my seat to find a new center of gravity.

    I've had the pump now for 5 or 6 years, had a catheter break twice, and the pump stopped working once. But now they make them better and longer lasting, and I hope it works for ya.

    I was out of the hospital the same day for all four operations (they were in the early morning), the original, and the three "repairs." Although it was AMA, I saw no reason to sit in a hospital bed all night.

    ps. I've stayed on the same dosage all these years...matter of fact, I just got a refill today. I go in every 3 months for a refill, takes about 10 minutes. I asked the doc about building a tolerance, but he says some people don't, some do.

    Good luck McD

    -peace

    "I believe this is America. Whatever happened to 'I don't agree with you, but I'll defend to the death your right to say it'?""
    ~Judge Shirley Rowe Trkula

    -peace

  8. #8
    Senior Member TD's Avatar
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    I am probably the "old man" of the pump since I have had it nearly 9 years now. I topped off on 160 mg of oral baclofen before my PMR suggested the pump and I have never regretted a day. A few suggestions:

    1) Develop and maintain a close relationship with the doctor that takes care of you. Be sure he/she tells you everything they know about potential problems.

    2) Don't be afraid to ask questions, both here and of your MD. The only stupid question is one that is not asked. The only thing I have found more stupid is letting a question go unanswered.

    3) Learn and be aware of the beeping sound your pump makes when it is low on baclofen. I recently suffered a bout of baclofen withdrawals when my pump broke. Believe me, if you start to get bad spasms and you start sweating profusely run to your nearest emergency room. They were pushing 4 to 5 liters of saline into me before they got my problem under control enough to replace the pump.

    4) You, not your nurse, doctor, or caretaker, know how you feel so pay attention. Do not be afraid to call you MD if you feel something does not feel "right" about your pump or medication. Be a squeaky wheel until someone addresses your concerns.

    It took a while but my new neurosurgeon now understands that he has to listen to me when I say that something is wrong. The turning point was my sudden appearance at the emergency room sweating.

    "And so it begins."

  9. #9
    Senior Member McDuff's Avatar
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    Howdy All,

    I'm a member of the pumpmasters now. (gotta be a joke in there somewhere...)

    Thanks for the replies and ideas. It's good to hear positives with a dose of what to watch for.

    I went in early monday, got checked in and things progressed well. The therapist came in and did the range check, starting with the right leg. Well it was acting nicely that day and she was commenting on how I wasn't toooo bad. Then she hit the left, had to chuckle when she worked up a sweat in about a minute. She got down to biz and worked up the form. Got mostly 2's(1-4,4bad) in the right, mostly 3's in the left. I had to tell her that I really felt bad for the people with 4's, don't know how they dealt. She said she would be back for a 2,4,6 hour check after shot. Said don't expect much at 2 hours, most wait til 4.

    Doc gave me shot at 10am. I didn't really feel it but he had a hard time "finding the way in". Gave me the same timeline as the p.t.

    P.t. came 2hr post, ran thru it, no improvment. Ok, fine. Then came the 4hr, no !@#$% improvement at ALL. She starts talking about the percentage of people who this doesn't work for. I am laying there thinking WTF is next? This is real close to the end of the line. Doc and she get together and come talk to me. Here's what we want to do, cancel surgery(it's sch for 7:15am next day) then come back with a double dosage shot the next day to see if that works. Razafrazzin... ok. In the meantime the surgical nurse comes down to do orientation, told her it was called off never mind. Oh well nice meeting you she says.

    I guess for shits&grins, the p.t. comes back for the 6hour test. Waallaa, loose as the proverbial goose. Man, she was wagglin' them left/right/up/down... I was watching with a flycatcher mouth. She goes tearin' off to page the doc, he flies back down and checks me out. He looks at me and says "Just once couldn't you do ONE damn thing normally?". I like this doc alot, gives as good as he takes. He had scrambled to cancel the surg, now was gonna try and get it on again. After him calling in a couple of favors, I'm on again. Yeehah, especially since the next date was a month out.

    Got razzed by the whole operating team, "'bout time you got down here. Finally made up your mind huh?" Good way to start...

    Woke up in reovery and looked down, my legs were laying flat and were separated by about 4 inches. They have not done this in over 4-5 months, noway nohow.

    Came home wed pm., the car ride took a toll, was in bed til this morning. Kindofa bitch, make the lower half happy, the top half hurts to all getout, where's the justice. But this will heal quickly.

    didn't realize how much I was using the spasticity to do things, rolling is a real bear when the legs really are dead weight. After things settle down I might have them tweek it back a little to get some tone back.

    Well I have rambled on enough, but I am already happy that I went thru with this.

    Later, McD

    "Rather be ridin' than rollin'"

  10. #10
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    I am wondering what people know about the intrathecal baclofen pump? I have a friend, C5-6, (injured at nine years of age, now sixteen) who is about to get this procedure done. He is walking but the hamstring & adductors on one leg is so tight that it does not allow him to walk correctly. If anyone has any input or any advice, (as to long term affects, health, success rate) I would greatly appreciate it!


    Posts: 13 | From: San Marcos, CA USA | Registered: 01-15-03



    Karchie
    Member
    posted 08-20-04 08:16 PM
    Dr Wise Young and McDuff,
    Thank you thank you thank you! There was a lot of info there and it gave me a better understanding of what is about to be done. A couple of questions if you don't mind.

    This boy does not have the common spasm. It is more of an intense tightness. It does not jerk his body around it's just tight at all times. He is a gaiter, (SCI who walks)so what I gather from your info is that this pump can be modified to anyone's needs. Essentially, he can adjust this pump to allow his hamstrings and adductors to work at a "normal" level....right?

    My second question is, do you know of anything negative long term? He is only 16 and already has had so much trauma to the body. I read that some do and some don't get hooked. How about anything else? I am going to take a look at the Medtronic, (as advised) to see if I can gather more info.

    All in all, everyone seems to agree that it eliminated, to some extent, the discomfort. That alone is a huge plus, right?!

    Thanks again for all of your help!

    Laura


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