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    Baclofen pump dye test

    Hi all.
    I am on my third baclofen pump. My first pump was replaced after 10 years. I had my second one for over 6. Last November I received my current pump.

    So here's the thing I have had puffiness on top of my new pump every since I got it. At my first refill my doctor mentioned the puffiness saying it was probably just fluid.

    The next refill he mentioned it again and he used a syringe to drain quite a bit of clear fluid off of it. And that has been the routine for each refill since.

    So yesterday when I had my pump filled he again seemed unconcerned. But I pressed him on it and asked if it could be baclofen leaking out. He didn't think so but he said we could set up a dye test if I wanted.

    So has anyone here had the dye test? I'm just wondering how long it takes. I'm not thrilled about having anything medical done right now but I think I need to find out what's going on.

    Thanks for reading this. Ei

    #2
    Hi Leenyi,

    10 years was really good for your first pump. Just curious how your doctor determined you could wait that long (since the max, according to Medtronic, is 7 years)? My first pump was replaced by 6 1/2 years. My current pump's ERI (Elective Replacement Indicator) alarm date is early next year, so know my doctor will want it replaced before then (again, about 6 1/2 years).

    Medtronic recommends having it replaced 6 months before it's automatic shut off date, which is approximately 90 days after the ERI alarm goes off, to avoid any possible interruption of therapy.https://www.medtronic.com/us-en/pati...placement.html My last doctor, who left the practice, had wanted to replace my last one 6 months before the ERI date (but was able to hold it off a little longer). I'm not looking forward to the surgery, even less now because of the COVID-19 virus.

    Originally posted by Leenyi
    So here's the thing I have had puffiness on top of my new pump every since I got it. At my first refill my doctor mentioned the puffiness saying it was probably just fluid.
    It sounds like your doctor thinks you have a seroma. I had one after my pump was replaced last time. It's a fluid filled sac that develops after a surgery or certain injuries. The fluid is the same as would be found in a blister. They usually resolve in a month, but can take longer, up to a year in some cases. Having them drained is a common treatment. If you've had one, you are more likely to have it happen again.

    My doctor said my pump was difficult to remove because I'd formed a lot scar of tissue around it. I wouldn't be surprised if I have a lot again, since some people are prone to form more. I had a major flare after my surgery, so was in inpatient rehab afterward when I noticed mine. My pump doctor said he could drain it, but took a wait and see approach instead. They gave me a binder to wear around my waist. I don't know how much that helped, but mine went away in a just over a month.

    They are generally nothing to worry about, which would explain why your doctor doesn't seem concerned.

    Here's some additional info about seromas:
    https://www.medicalnewstoday.com/articles/312875

    https://draxe.com/health/seroma/

    Originally posted by Leenyi
    So yesterday when I had my pump filled he again seemed unconcerned. But I pressed him on it and asked if it could be baclofen leaking out. He didn't think so but he said we could set up a dye test if I wanted.

    So has anyone here had the dye test? I'm just wondering how long it takes. I'm not thrilled about having anything medical done right now but I think I need to find out what's going on.
    I have heard of this happening before, so might ease your mind to find out if that is the problem. I had the dye test done several years ago. Sorry I don't remember how long it took, other than the longest part was waiting awhile after the dye was injected before my fluoroscopy was done..The actual fluoroscopy didn't take long from what I remember.

    Good luck with whatever you decide to do, and hope you'll keep us informed on what happens.
    Kimba

    “When you change the way you look at things, the things you look at change.” ― Max Planck

    Comment


      #3
      Hi Kimba thank you for your reply!

      As far as your question about my first pump being 10 yrs old. I might have exaggerated a little it was 9 yrs 4 months old when he replaced it. That pump was put in in 2003 and I don't think they had automatic shut off programmed into it?
      When he put my next pump in he told me that one would have the be replaced after 6 1/2 years.

      As far as the puffiness my sister whose a doctor also thought it might be a seroma. But it's been a year and a half since the surgery shouldn't it go away?
      I'm not too worried since I'm not having spasms or other baclofen withdrawal symptoms. My main concern is the catheter is 16 1/2 years old and I thought it might be leaking some.

      Well anyway thank you you for your input. It makes me feel some better about waiting till after the corona virus before I do anything!

      Take care. Ei

      Comment


        #4
        Hi Leenyi,

        Thanks for answering my question about your first pump. That may just be the answer, since the SynchroMed II wasn't FDA approved until 2004. Someone else had mentioned they knew of someone who went longer than 7 years with their pump, but I didn't know how they could do that. There is a pump by a different company (Prometra II) that has a 10 year battery life, but it was just intoduced to the market last November and wasn't FDA approved for the use baclofen until February.

        Thought it was interesting at one time they had pumps that didn't use batteries called mechanical constant flow pumps (eg Pfizer’s Infusaid, Codman’s Model 3000 and Medtronic’s Isomed), so didn't have to be replaced due to power failure. They were intended for life long use. Wouldn't it be nice if we didn't need all these surgeries to replace them!

        As far as your swelling, I thought your pump was replaced last November, not the year before from your post. I read somewhere some seromas can take longer than a year to go away, and some can be chronic. I probably wouldn't rush out to have the done dye test right now either, since you don't have any withdrawal symptoms, and your doctor wasn't overly concerned.

        You've had it since your surgery, and it doesn't sound like it's gotten worse. But, I do understand why you'd be concerned it might be your catheter. It's encouraging to hear your catheter has lasted this long! Mine is 13 1/2 years old, and hope it continues to last for awhile.

        Rdmc had swelling due to catheter failure. but she also had withdrawal symptoms. Here is the thread were she tallks her experience: https://www.msworld.org/forum/showth...on-BobOP/page2

        Best of luck!
        Kimba

        “When you change the way you look at things, the things you look at change.” ― Max Planck

        Comment


          #5
          Hi Leenyi,

          Welcome to our group. I have had a Baclofen pump since 1999. I am on my 4th pump. I have been on 3 generations of the pump.
          I will be getting my 5th pump towards the end of the year.
          I have had the dye test done at least 4 times. They check my catheter each time the pump is replaced.

          Speaking of catheters, I had mine replaced about 2 years ago. It lasted 19 and a half years. I now have the new catheter Medtronic came out with about 5 years ago.

          I wish you the best, Bob

          Comment


            #6
            Originally posted by bobtheisen View Post
            Hi Leenyi,

            Welcome to our group. I have had a Baclofen pump since 1999. I am on my 4th pump. I have been on 3 generations of the pump.
            I will be getting my 5th pump towards the end of the year.
            I have had the dye test done at least 4 times. They check my catheter each time the pump is replaced.

            Speaking of catheters, I had mine replaced about 2 years ago. It lasted 19 and a half years. I now have the new catheter Medtronic came out with about 5 years ago.

            I wish you the best, Bob
            Hi Bob!

            Awesome to hear your catheter lasted that long! Hope the new one lasts well beyond 20 years! I assume you now have this one?
            https://www.medgadget.com/2012/09/as...d-ii-pump.html

            Good luck with your surgery later this year. Wow, 5 pumps! I'm due for my 3rd soon.
            Last edited by pennstater; 06-16-2020, 12:50 PM. Reason: Corrected url per user request
            Kimba

            “When you change the way you look at things, the things you look at change.” ― Max Planck

            Comment

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