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Baclofen pump FAQ

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  • dewie27
    replied
    I went and looked at a pump last week. It’s the syncomed 2 model. Is it a good pump or are there any different ones out there? I’m a T2 para and have a syrinx on the right side, so my right arm has INSNANE nerve pain and takes a fentanyl patch to control it. But I change the patch every 48 hours and my pain is up and down depending when my patch is getting due to change. So they want to do morpheme and bachlofen in the pump. So my question is does anyone get the optional remote for when you want a extra shot of meds? And with morpheme does your body always need to increase the level like all other oral opiates?? I’ve increase my fentanyl patch a little bit every year. Just curious if it’s the same with a pump. And after the trail and if it’s a success where do they place the port to refill the meds? Is it right above the pump in the belly? Thanks for the help. Hope this helps me.

    Leave a comment:


  • SCI-Nurse
    replied
    Baclofen primarily works on striated muscle such as that in your trunk, legs, and (to a lesser degree) arms. Bladder Botox is targeted for use on smooth muscle such as you see in internal organs such as the bladder, gut, etc. It is unlikely that having a baclofen pump would replace the use of either anticholenergics medications or Botox for high pressures and instability of the bladder.

    (KLD)

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  • fireguy149
    replied
    Thinking of getting a baclofen pump due to tone. Does this mean that Botox injections would no longer be needed, or will it depend on how well the pump works??

    thanks in advance

    Leave a comment:


  • catlikekg
    replied
    Do Baclofen pumps work for people who have a syrinx above the level of injury? ty

    Leave a comment:


  • zagam
    replied
    Defective cyborgs

    Originally posted by Lazlo View Post
    Question on the Codman pump: How is the dose adjusted? It sounds like it has no electronics at all.
    Strength and viscosity of the solution.

    It is a constant rate, but does not rely on dodgey software or batteries. There is a bypass bolus port in it accessed with a different needle so they have to use the correct needles, strength, etc.

    The FDA, TGA, etc. do not have deep experience with engineering and design of things that are to be fit for purpose. So do not have the same standards as aerospace even though I would regard the application as safety critical. They rely of "proof" of qualitative hypotheses with statistics so the device only need save a few more than it kills. (Normally in science qualitative demands an unequivocal result and quantitative passes through all the error bars.)

    SCADA and automotive software has also always been at or reached rock bottom.

    You need an airgap. However, this means they need to cut for physical access to make adjustments. UUCP email is not an air gap as I have seen Internet Protocol transport that used UUCP email between networks. Validating proxies between VMs is not an airgap as proxies can be tricked with escape artistry. A careful person retyping by hand info that they have verified between un-trusted PeeCee and real terminal on a secure system may be an air gap.

    Karen Sandler, cyborg lawyer
    https://blogs.gnome.org/gnomg/category/medicaldevices/
    https://www.youtube.com/watch?v=qW1h1s_ojpM
    https://www.youtube.com/watch?v=5XDTQLa3NjE

    The modern day assassin is armed with a laptop equipped with WiFi and BlueTooth. If they can't crash you they can crash your car with you in it.
    https://nakedsecurity.sophos.com/201...hwart-hacking/
    Last edited by zagam; 30 Aug 2016, 4:21 AM. Reason: Added Karen Sandler, cyborg lawyer links

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  • taziar
    replied
    Originally posted by bollefen View Post
    I have posts on the pain board as well, but this is best here. How much do you get billed for a baclofen pump refill and how does your insurance comapny cover it? % wise, Max payment per year wise? and finally if you each your max out of pocket do you still have a drug co-pay?

    I can't live without it and the costs are staggering, trying to sort through this with my insurance company and it was recently complicated by adding Prialt to the mix.

    I just got a bill for $2255.54 (after the insurance benefit) and assumed it was the Prialt blah blah anyway I misread the bill and that was for the refill before they added Prialt so that is a straight baclofen refill.

    this is getting very scary $$$$ wise. Can't live without and can't afford to pay for it?? How are you paying for it.

    I'd like a bit more info before I call the insurance company again but already have my next refill scheduled.

    help

    ket
    I just got a pump implanted last week, so I don't know exactly how the billing will shake itself out. However, I did deal a bit with the pharmacy involved when I had the ITB test done. For that bolus dose, my insurance company got a claim from the pharmacy like $300 total. The insurance company covered 60%, but the pharmacy forgave the entire patient balance. I talked to them directly and they indicated without stating it directly, that they worked very hard to make sure they made profit off the insurance company and then tried not to go after the patient for anything. I don't know what I'll do if they try to screw me, but with the pump working now for just over 1 week, there's no way I'm letting them take it away. It's an absolute game changer for my quality of life.

    Good luck!

    Leave a comment:


  • bollefen
    replied
    PLEASE HELP Cost of Baclofen pump refill 2013

    I have posts on the pain board as well, but this is best here. How much do you get billed for a baclofen pump refill and how does your insurance comapny cover it? % wise, Max payment per year wise? and finally if you each your max out of pocket do you still have a drug co-pay?

    I can't live without it and the costs are staggering, trying to sort through this with my insurance company and it was recently complicated by adding Prialt to the mix.

    I just got a bill for $2255.54 (after the insurance benefit) and assumed it was the Prialt blah blah anyway I misread the bill and that was for the refill before they added Prialt so that is a straight baclofen refill.

    this is getting very scary $$$$ wise. Can't live without and can't afford to pay for it?? How are you paying for it.

    I'd like a bit more info before I call the insurance company again but already have my next refill scheduled.

    help

    ket
    Last edited by bollefen; 8 Apr 2013, 1:43 PM. Reason: can't type

    Leave a comment:


  • new dimension
    replied
    pump installed

    Yesterday was the day...had some what I think are typical hiccups, delays, some AD after from bladder fullness as it was relieved quickly with cathing. Tough night in the hospital fighting, over heating and the.chills from one moment to the next. The relief from spasms is unbelievable...they are gone from the lower torso. Very hard to believe after 5 years of spasms that I had to fight with all my.might as a care taker making even. daily tasks a challenge and dangerous. So far no spinal headache thank God! Praying.for life changing results....although we tried to use the spasms in positive ways towards recovery we were truely beaten down. Praying the benefits outway the risks!

    Leave a comment:


  • SCI-Nurse
    replied
    The restrictions after implantation are no lifing, bending, twisting for 6 weeks, especially the first three weeks. Get help with transfers and care so you don't have to do this. If you do this then your pump and tubing will be fine. Increases (titrating) can be done every other day or every day till you get to eh right dose and then you can have adjustments specifcs to your needs i.e. if you need more during the night etc...
    You will be given refill apointments before the reservoir gets low and the pump alarms.
    CWO

    Leave a comment:


  • rybread
    replied
    Those of you wondering if it improves your quality of life, I couldn't live without it. My spasms before I got it or so bad that whenever I would hit a bump my body would straighten out and outside down in my chair. If I got rubbed in my legs or just moved just right my legs would kick up out of the chair. Sometimes lifting my arms to push would even cause spasms. They would hit my obliques (muscles on the sides of my abdomen) and pull me over to the point where I couldn't get back up. Six years ago, after a replacement, the replacement site got infected and I had to have the pump removed for a month. My spasms were so bad I physically couldn't get out of bed without spasming so hard it would knock me out of my sling or I would hurt a caregiver. I stayed in the hospital after it was removed because of that plus the withdrawal from baclofen, which gave me crazy hallucinations. If you're taking over 80 mg of baclofen a day you're taking too much. Another great thing about the pump I've noticed is I get a little bibucaine put in it to help bring down my central pain. I notice a big difference whenever I lower my dosage. I posted pictures on here of what it looks like. They typically put it on the side of your abdomen and it sticks out about an inch. Don't let that discourage you from getting it. Trust me, it's worth It If you can't get your spasms or pain to a safe level. Have them do a test dosage to see how you like it. It's fully adjustable and can be set up did you boluses at certain times of the day when you're spasms are the worst. I get most of my dosage through boluses and I also have a continuous stream being pumped.

    Leave a comment:


  • Axle
    replied
    Originally posted by Kevin Giblin View Post
    I really reached a point where I thought I just could not go on. The pump dramatically changed all that for me.
    What dosage and how long did it take to find the right dosage? Turning it up too much too quickly leaves me sleepy for weeks.

    Leave a comment:


  • zagam
    replied
    Defective cyborg

    They need to be monitored as though it provides relief you develop both resistance and dependence. If it fails to deliver for any reason then this can be a medical emergency (hyperthermia and rhabdomyolysis). Delivering it to where its needed though is better tolerated.

    http://blogs.gnome.org/gnomg/2012/01/
    http://www.youtube.com/watch?v=5XDTQLa3NjE
    (Sorry can only find youtube which I can't play.)
    http://www.techrepublic.com/blog/aus...nds-source/577
    http://media.cnetnetworks.com.au/aud...012-ep3-01.mp3
    (Audio content is in a plain URL.)

    I get funny spaz that's painful so I manage with painkillers. Some times I go beetroot colour or blotchy and sweat including headache, etc. Some times removing clothing and ice, water or both is enough. Painkillers work, but they take time.

    Low SCI should not get AD, so bad elsewhere, something else or am I a defective cyborg too?

    I was on all sorts of nasties for pain from pain specialist. Now opioid does it and need has not increased.
    Last edited by zagam; 27 Feb 2013, 11:57 AM. Reason: bad link

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  • Kevin Giblin
    replied
    Bacelfin pump...is it right for you?

    I think the pump implant is sort of like a knee or hip replacement. Nobody really wants to have it done unless ones condition becomes so unbearable that you can't live with out it. For me, my muscle spasms got so intense that it was affecting many areas of my quality of life. For example, I couldn't allow my body to fully extend - like laying flat in bed, because my back & leg muscle would contract so intensely that it would cause serious AD--autonomic dysreflexia, so always had to keep in fetal position. Had to devise all kinds of restraint systems & had exceeded safe limits on oral spasm medication. I really reached a point where I thought I just could not go on. The pump dramatically changed all that for me. I am now 7 years post implant & am a few months away from having another replacement pump installed since my battery life is about up on my 1st unit. Yes, there is the possibility that something can go wrong with the pump so you have to look at the present data including the best places to get it done. My was installed at Stanford Medical by Jamie Henderson & I would have it refilled every 6 months....

    Leave a comment:


  • vjls
    replied
    Originally posted by new dimension View Post
    Looking for those you have a pump and their thoughts on if it has been worth it? How has it improved your quality of life? How it actually looks under the skin? Who have had problems with procedure and/or after? How long have you had the pump and what level of injury do you have?
    Scheduled for March 5th and as always worried?
    some like it i did to for awhile then it got a kink in catherea but they did not find for 3 yrs
    it almost killed me

    if if it had stayed working heaven yes but now i am to scared but it was great

    if that makes sense

    Leave a comment:


  • PN
    replied
    I am moving this thread to our Care Forum. I decided against getting the pump because I was concerned about potential malfunctions.

    Leave a comment:

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