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Thread: In need of questions for a Baclofen pump consult

  1. #1

    In need of questions for a Baclofen pump consult

    Hi Everyone,

    I am having a consultation on February 9 for a Baclofen pump @ Barrow Neurology in Phoenix. I had a consult with a Dr. Lieberman and he examined me, reviewed my records from my original hospital when my SCI took place and thought a Baclofen pump might be a good fit.

    My question is:

    What questions should I write down to ask Dr. Shetter? (Dr. Lieberman referred me to a neurosurgeon who specializes in Baclofen pumps) I have read a bit of some of the threads on this subject but I just want to be sure I have covered everything. I am also wondering, IF, after the consultation, the Baclofen pump IS NOT a good fit, what else may be considered???

    Thanks in advance for your feedback!

    Mike

  2. #2
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    I wish I could have gotten through the experimental trial with a baclofen pump, but my doctor made me get a psychological evaluation, and said that I was too depressed for it. I am in the process of trying to find another doctor. I tried explaining to the doctor that the pain is what depresses me, but he did not want to hear it.

    Did you have to get a psychological evaluationalso, did you go through the trial phase? If so, did it help yes, now or somewhat?

    Best of luck!

  3. #3
    I would ask whether you would/ could be re-admitted to inpatient rehab in order to deal with the possible change in abilities to perform ADLs and functional mobility independently. Of course there are a lot of factors related to admission, but in your case the baclofen could change your current level of functioin so much that you could possibly benefit from a brief rehab stay.
    I would also want to know how often the possibility of changing the dosage is anticipated. Do they change doses incrementally taking potentially months to 1-2 years to find the optimal level for you? I have seen people tighten up and develop contractures as a result of lack of close monitoring of dosing.
    What are the alternatives to the pump, and what if the pump clearly decreases abilities......
    This is not a decision to take lightly, and while I have for the most part had people benefit greatly, I have had patients not closely monitored and actually develop MAJOR contractures, and on the other extreme they could barely keep their eyes open due to overmedication.
    Another consideration is whether you are involved with an exercise recovery program where some do not allow use of anti-spasticity medications as a condition of participation. I believe they allow entry into these programs, but the expectation is that you wean off of them in order to continue. Please correct me if I am wrong, but that is my understanding from patients I work with or have worked with in the past. This is not meant to be a judgment against ERP, in fact I wish funding would allow more to participate- they just operate with some alternative philosophies-contradicting the use of anti-spasticity meds.
    It is life saving and life altering for most.
    Good Luck,
    Pam OTR/L

  4. #4
    Senior Member rdf's Avatar
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    Quote Originally Posted by michael5462 View Post
    Hi Everyone,

    I am having a consultation on February 9 for a Baclofen pump @ Barrow Neurology in Phoenix. I had a consult with a Dr. Lieberman and he examined me, reviewed my records from my original hospital when my SCI took place and thought a Baclofen pump might be a good fit.

    My question is:

    What questions should I write down to ask Dr. Shetter? (Dr. Lieberman referred me to a neurosurgeon who specializes in Baclofen pumps) I have read a bit of some of the threads on this subject but I just want to be sure I have covered everything. I am also wondering, IF, after the consultation, the Baclofen pump IS NOT a good fit, what else may be considered???

    Thanks in advance for your feedback!

    Mike
    You won't know if it's a good fit until you get the test bolus. They shoot some baclofen into your spinal canal and monitor the effects. I woke up after the test shot and fell out of the hospital bed trying to transfer into my chair. I was so accustomed to spasticity, I overdid it. But I was so happy and so much more capable of living life after the test shot, I and the docs said a pump was the way to go.

    For me, it changed my life. Before, I was suffering constant spasticity 24/7, I was lucky to make it an hour or two without flopping back out of my chair or kicking someone with extended legs spasms...and I'm T5 complete.

    If the test bolus doesn't work (test shot), then you don't get the pump installed. If the test works, and you get the pump, more than likely it'll work out great. I came out of the hospital after the pump implantation and didn't change my dosage for 12 years. 'Lo and behold about 11 months ago, I had a catheter come lose, and after they replaced the defective link of the catheter, they lowered the dosage because I'd been without the baclofen for sometime, and now I'm on around 65% of my previous dosage. All is well once again, even with the lower dosage. The docs surmised that my catheter had been leaking for years...but don't let that scare you, it's not a common occurrence.

    If you get the pump surgery, which is pretty much outpatient (23 hours), and it doesn't work well, it's just another outpatient surgery to remove it.

    But believe me, as someone who took oral Baclofen in insane amounts to alleviate the spasms, the intrathecal baclofen will work wonders for most people. Good luck friend.
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  5. #5
    Senior Member darrel's Avatar
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    it was the best thing for me, before the pump it looked like I had terrettes syndrom. the pump was put in a year ago and it has been wonderfull to get out and be socitable again.
    take your trial dosage to find out if it will work for you, you will feel the difference right a way (20 min.?)
    I am a walking quad and now that I don't have all the spastisty I can walk about 200 yards with the assistance of a quad cane.
    It is wonderfull it opened up the world back to me.

  6. #6
    Quote Originally Posted by Larsen View Post
    I wish I could have gotten through the experimental trial with a baclofen pump, but my doctor made me get a psychological evaluation, and said that I was too depressed for it. I am in the process of trying to find another doctor. I tried explaining to the doctor that the pain is what depresses me, but he did not want to hear it.

    Did you have to get a psychological evaluationalso, did you go through the trial phase? If so, did it help yes, now or somewhat?

    Best of luck!
    Sounds like an old member who left the boards Either way, yes getting a baclofen pump requires a psych eval. They are placing a catheter to deliver drugs directly to your spinal cord, you can do some real damage to yourself if your depressed and or a drug seeker.
    Dave
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  7. #7
    Senior Member rdf's Avatar
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    Quote Originally Posted by dgrotz View Post
    Sounds like an old member who left the boards Either way, yes getting a baclofen pump requires a psych eval. They are placing a catheter to deliver drugs directly to your spinal cord, you can do some real damage to yourself if your depressed and or a drug seeker.
    That isn't true, unless my situation was unique. I never was required to have a psych eval. The intrathecal baclofen has no effect on mood or mind....besides a better quality of life due to decreased spasticity,

    My spasticity was so horrible, my doctor set up the test shot due solely to his observations of my hyper-spastic condition, which began 3 days after my injury. I fought it for about a decade, and the spasticity finally ruled my every moment.

    I've never heard of a psych evaluation for a baclofen pump.
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  8. #8
    Senior Member McDuff's Avatar
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    No psych eval for me either. 'Course my Doc was the head of spinal side of neurology and was my Doc from day one, so he knew me and my temperament intimately. He was also the one who did the test shot, but had a surgeon do the install.
    "a T10, who'd Rather be ridin'; than rollin'"

  9. #9
    Quote Originally Posted by rdf View Post
    That isn't true, unless my situation was unique. I never was required to have a psych eval. The intrathecal baclofen has no effect on mood or mind....besides a better quality of life due to decreased spasticity,

    My spasticity was so horrible, my doctor set up the test shot due solely to his observations of my hyper-spastic condition, which began 3 days after my injury. I fought it for about a decade, and the spasticity finally ruled my every moment.

    I've never heard of a psych evaluation for a baclofen pump.
    Some hospitals including mine do require them, if anything I'm less depressed now, that's not the point they are making sure your not drug seeking, remember you can put opiates in these to. A psych eval is not a bad idea for younger patients, btw I passed mine with flying colors.
    Last edited by dgrotz; 01-10-2009 at 02:56 PM.
    Dave
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  10. #10
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    No psych eval for me either. I guess it depends on the doctor?

    Quote Originally Posted by SCIOT View Post
    I would ask whether you would/ could be re-admitted to inpatient rehab in order to deal with the possible change in abilities to perform ADLs and functional mobility independently. Of course there are a lot of factors related to admission, but in your case the baclofen could change your current level of functioin so much that you could possibly benefit from a brief rehab stay.
    I would also want to know how often the possibility of changing the dosage is anticipated. Do they change doses incrementally taking potentially months to 1-2 years to find the optimal level for you?
    Two good points. I was transferred from the hospital that did the surgery, to my rehab hospital. The surgery was considered outpatient, but then I went in for 2 days of rehab. It made a big difference in my transfers (I didn;t realize that I was actually using the spasticity). Being inpatient allowed them to adjust the dose more frequently for a day or 2. But since then mine has been adjusted several times ..... 10% at a time, and it took almost a year to get it set "just right". I was concerned at first ..... it seemed like I kept getting used to it, and it would be increased. I envisioned that continuing indefinitely. But it is normal to take a while.

    Now I have it set so that there is some spasticity. As I said, I do use it for transfers. Too floppy isn;t good either.
    T7-8 since Feb 2005

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