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Baclofen pump problems for long term use ?I

Reagleton1Reagleton1 Member Posts: 3
First Comment
I have heterotrophic ossification in my right hip area as result of a SCI  in Mar 09. The injury was at the C3-4 level resulting in paralysis, at and below shoulder level. I received Rehab at Craig Hospital in May-August 2009, a blessing to learning about SCI and living with a SCI.

 I presently have a dull, throbbing pain in my right flank with muscle tightness extending from the spine to across the abdomen.  I believe the tightness and pain originates from a large amount of ossification in the hip and extending into the muscle above the hip.  I have MRI X-ray that shows the HO.  A second possible cause, as expressed by other doctors, is a reaction to the pump.  I need advice on how to determine the exact cause of the pain?

Russell Eagleton
[email protected]

Comments

  • deborahvickdeborahvick Member Posts: 37
    10 Comments 5 Likes Name Dropper Photogenic
    Why would they think it's a pump? Has something changed with it? I ask because I've had a pump for several decades - not always the same one batteries have to be changed, with that said thoughonly times I've had problems with the pump have always been directly after it's been implanted that is at least in terms of pain
    Don't let today's struggles keep you from enjoying the days in yet to come!- Deborah Vick
  • Reagleton1Reagleton1 Member Posts: 3
    First Comment
    Thanks Deborah,  Two reasons have been given.  First anytime a foreign object is in the body it can be suspect.  Second, the area of signicant pain is adjacent to the pump. Where the catheter, delivering the medicine,attaches to the spine I have a knotted muscle. Releasing this knotted releases tension across the abdomen.

    Russell
  • deborahvickdeborahvick Member Posts: 37
    10 Comments 5 Likes Name Dropper Photogenic
    have you had an ultrasound to check the catheter and such? The person who filled my pump every month actually checks it with an ultrasound machine
    Don't let today's struggles keep you from enjoying the days in yet to come!- Deborah Vick
  • Reagleton1Reagleton1 Member Posts: 3
    First Comment
    I have had a KUB ultrasound, but not of the catheter as it attaches to the spine.  Will pursue thiś.

    Thanks for the hint!
    Russell
  • ambercollieambercollie Moderator Posts: 106 Moderator
    100 Comments First Anniversary 5 Likes 5 Awesomes
    @deborahvick you mentioned you've had a baclofen pumps for decades with no problems. We have considered one over the years my sons spasms are quite bad. Can you tell me anything else positive or negative about having the pump? Also do you drive? 
    @Reagleton1 keep us posted I hope you can get to the bottom of that pain.
  • BrittanyFrankBrittanyFrank Moderator Posts: 65 Moderator
    10 Comments 5 Awesomes Name Dropper 5 Likes
    Pain is so tricky with SCI and our ever differing sensation. I had a really positive experience with the baclofen trial, but decided against the pump. I know of other friends that have gotten their pumps out, but not because of a reaction. Hopefully you can figure out the source of pain and find a solution.
  • ambercollieambercollie Moderator Posts: 106 Moderator
    100 Comments First Anniversary 5 Likes 5 Awesomes
    @BrittanyFrank do you still use Baclofen? Is there other options for spasms?
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