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Thread: Baclofen pump FAQ

  1. #111
    well update on my pump status. i went up to 295mcg and i started noticing my arms becoming weaker. i saw my rehab doctor the other day and he thinks it's because my tip of the catheter is in or around C3 or 4 i think. so they had to bump it back down to 219 and guess what my arms feel a little bit better. so guess what this means???? yup going back in and having the catheter cut down and moved down. GRRR. this wouldn't have happened if they had taken an x-ray while they were still in the OR!!! not sure what to think about this....i'll have to live with more spasms till it's fixed i guess.

  2. #112
    Senior Member rdf's Avatar
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    Well it was just what I already knew. The dye study showed a huge leakage at the connector between the new and old catheters. Very little baclofen makes it up the catheter.

    I have surgery on the 19th. I've told them to get rid of the two piece catheter, and put in the 8709 only, which is designed to be a one-piece catheter from the pump up to the intrathecal space.

    The Medtronics rep was there, and I told him to make sure the surgeon follows the steps to verify correct connection at the pump that Medtronics has issued. I can't wait, but it's great that the problem is identified.

    LeedDogg, the dye study took about 60 seconds to identify the problem. I don't know the reason your doctor wants a multi-day study done. There must be some reason, you should ask him, make sure he knows what he's doing, and has done dye studies before.

    The Medtronics rep and the pump doctor of course blamed it on me. They said I was too active, being as I broke the connector that just was repaired in Dec., that surgery needed for basically the same reason, connector problems. I said BS. They asked me if I scoot around on the floor on my back, lmao. I said yeah, it's my favorite form of indoor mobilization I told them it wasn't me, it was the rinky dink setup connector kit with pins they have to use to connect the old and new catheters. The rep said no, he's seen hundreds and it's been tested and tested and tested, with no problems.

    I'm just glad the relief is near. I wish everyone else good luck in solving their problems and getting some relief, also. God knows it's a great thing, this baclofen pump, but it can also be a nightmare at times. I had a good run there of 7 or 8 years with no problems, then bam, two in a row.

    Good luck everyone.
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  3. #113
    Senior Member rdf's Avatar
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    Quote Originally Posted by sjean423 View Post
    I guess I need to be a little more proactive here. I just looked as well, and my catheter is 8709. No SC tho. Does the SC make a difference, or does the printout just list the numerals (the SC being understood)?

    I'm not having any issues, but didn;t even realize there could be.

    Guessing I have some q's for my doc!

    Sorry you are back to having issues, and have a jerk for a doctor! Hope you get this resolved asap.
    My printout only has the numbers 8709. The SC is implicit to that catheter, I was told. It means Sutureless Catheter, but doesn't show up on the printout. I'm glad I'll only be having one catheter instead of two - the more parts, the more likelihood of failure somewhere. Hopefully I can after surgery have a good run of good luck. One can hope.
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  4. #114
    what they did yesterday is put nuclear dye in my pump. and I'm going tomorrow to have a neuro xray to see where exactly the dye (bacolefen) is going and not going in my spine. The doctor turned my pump down to 290 yesterday also. Medtronics rep????? I have never once seen a rep here in South Carolina. Just docs that put them in and just "care" for them.

    The doc that I'm currently seeing only adjust doses or refill units or does tests. He does not replace cathedar or put pumps in. The doc that put my pump is over two hours away. And right now they are disagreeing on if the cathedar needs to be replaced. One says yes, but the doc that put the pump in. Says try this and report back to your other doc. Even though the doc that "cares" for it has tried everything he knows. Its very frustrating.

    This nuero test is the only other thing he knows to try.

    Edit: rdf, I've already had two of the regular dye studies you had. And they didn't find anything.
    Last edited by Leedogg; 03-11-2009 at 04:07 PM.

  5. #115
    Senior Member rdf's Avatar
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    Quote Originally Posted by Leedogg View Post
    what they did yesterday is put nuclear dye in my pump. and I'm going tomorrow to have a neuro xray to see where exactly the dye (bacolefen) is going and not going in my spine. The doctor turned my pump down to 290 yesterday also. Medtronics rep????? I have never once seen a rep here in South Carolina. Just docs that put them in and just "care" for them.

    The doc that I'm currently seeing only adjust doses or refill units or does tests. He does not replace cathedar or put pumps in. The doc that put my pump is over two hours away. And right now they are disagreeing on if the cathedar needs to be replaced. One says yes, but the doc that put the pump in. Says try this and report back to your other doc. Even though the doc that "cares" for it has tried everything he knows. Its very frustrating.

    This nuero test is the only other thing he knows to try.
    My doc used a fluoroscope. It's like an x-ray, but you can see better and rotate around to get a 360 degree view. He withdrew a little baclofen, then injected the dye into the second pump port, the one not used for refills. He had cranked it up about half a minute before injecting the dye. We all sat there and watched the dye travel from my pump through the catheter. 60 seconds later the dye was bleeding out of the connector into my CSF at the base of my spine. Very little was getting pumped up the catheter to the distal end up at T7.

    There should always be a Medtronics rep when any surgery is done with the pump or catheters. For a dye test, I believe my doctor brought in the rep because of all the complaining and bitching I was doing about the connector problems I'd read about. The doc doesn't like me much, but he's a little afraid after I went to the hospital's Qaulity Control when he refused to test me for catheter problems.

    I could have had this done 6 weeks ago when I first went into withdrawals and told him there was a break somewhere in my catheter. He said no, it had only been 2 months since my last catheter surgery, and it had to be something else wrong with me. (He did take simple x-rays in the ER, but they didn't show any problems - which oftentimes they don't) I told him before the last surgery they'd told me I was a very healthy man, and that I didn't believe there was anything physically wrong with me that was causing the withdrawals and spasticity. I told him I felt exactly the same lying there in the ER, with full body spasms every half second, the previous 4 or 5 times in 12 years when a catheter broke or a pump battery died. He just didn't believe me, and thought I had a uti or a freakin hangnail or something similar.

    Tell your doc you want a Medtronics rep there because they're trained well and might spot something your doc might miss. Or at least he can call them and get the details on how to do a fluoroscopy dye study, which is so much quicker.

    Here's Medtronics number: 1-800-707-0933. Give them a call, choose tecnical support option.

    Good luck LeeDogg.
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  6. #116

    best place to buy a pump?

    any online vendors ?

  7. #117
    It's not something you can buy, it has to be surgically implanted by someone who knows what they're doing. Do you have a spinal cord injury? With spasm problems? it wouldn't be much use to you if you don't have that.
    C-5/6, 7-9-2000
    Scottsdale, AZ

    Make the best out of today because yesterday is gone and tomorrow may never come. Nobody knows that better than those of us that have almost died from spinal cord injury.

  8. #118
    Leedogg, where in SC do you live? Who put your cath in?
    _____________

  9. #119
    i live in Johnsonville, but went to Charleston MUSC Dr. Istvan Takacs neurosurgeon (can't spell his name he's from Germany)

  10. #120
    WOW this was a surprise today...

    the pump isn't pumping at all, the dye is still sitting in the reservoir. Its not even going up the cathedar. Going back tomorrow for another nuclear x-ray to see if the dye has moved any. The doctor was not there when they did the x-ray.

    If your wondering I'm not having any withdraw symptoms.

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