Sorry y'all this is a long post and may be boringly technical.
I have been on the Baclofen pump since June.
I got help from 75 mcgm.
Between June and Dec. they would increase the dosage, the Baclofen would start working, but within a week the rigidity would be back. Another increase, within a few days the rigidity is back, and so on.
In December, at the time for the refill, the pump had flipped over and they had to go back in re-secure it.
Since then we have increased it over 70mcgm in a week and no relief of the stiffness.
I am up to 320mcgm with total stiffness.
Now they think the catheter might have moved from the intrathecal space, so it is dumping Baclofen somewhere in my spine, but not where it's going to help me.
My questions....
1. Has anyone had this much trouble getting their dosage regulated?
2. Has anyone had this many problems with the pump (although I know it's not the pump but the installation).
3. Does anyone have any idea what all this useless Baclofen may be doing to my internal organs? (Baclofen withdrawal from the pump may cause massive organ failure).
4. My hands are stiffening up. I wonder if it has to do with the big dose of Baclofen.
5. I am ticked off at my neurosurgeon. If I had the money I would sue him, but I'm using all my money for copays and deductables.
If anyone can answer any of these questions I would appreciate it.
My neuros try to not scare me so sometimes they aren't as forward as I would like.
Thanks
I have been on the Baclofen pump since June.
I got help from 75 mcgm.
Between June and Dec. they would increase the dosage, the Baclofen would start working, but within a week the rigidity would be back. Another increase, within a few days the rigidity is back, and so on.
In December, at the time for the refill, the pump had flipped over and they had to go back in re-secure it.
Since then we have increased it over 70mcgm in a week and no relief of the stiffness.
I am up to 320mcgm with total stiffness.
Now they think the catheter might have moved from the intrathecal space, so it is dumping Baclofen somewhere in my spine, but not where it's going to help me.
My questions....
1. Has anyone had this much trouble getting their dosage regulated?
2. Has anyone had this many problems with the pump (although I know it's not the pump but the installation).
3. Does anyone have any idea what all this useless Baclofen may be doing to my internal organs? (Baclofen withdrawal from the pump may cause massive organ failure).
4. My hands are stiffening up. I wonder if it has to do with the big dose of Baclofen.
5. I am ticked off at my neurosurgeon. If I had the money I would sue him, but I'm using all my money for copays and deductables.
If anyone can answer any of these questions I would appreciate it.
My neuros try to not scare me so sometimes they aren't as forward as I would like.
Thanks
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