intrathecal baclofen


alansd

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after being in a clinical study at Emory University,i learned about the intrathecal baclofen pump. I visited a renown local neurologist who highly recommended it for  me.It took many months to find a surgeon  skilled  in  this area. Then i had to get a trial of the drug, by having a spinal injection of a microdose, to determine  effectiveness for me.It worked very well, and we scheduled surgery for the pump implant.I got this in March.It remains to find the appropriate dose, staring at 50 mcgs daily.Now after a number of dose adjustments I am seeing results at 129mcgs,My shoulder tendons are  relaxed ,my neck is less tight.My pec tendon was super tight and no amount of stretching helped, but it is now not a problem.

My leg is slightly looser, but the calf and ankle not yet.I will continue dose adjustments at 10% per visit, until the leg is improved.The pump is good for up to 7 years, then will need replacement,It will be refilled as needed, in 2024. This is the only relief for spasticity I have found. facebook has an active pump user group which is very informative.

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Interesting to hear this Alan I have avoided Baclofen as it is a systemic treatment that will relax all muscles not just the spastic ones. Are you finding any issues with over relaxation of non spastic muscles? I’m still using periodic botox injections for my worst affected muscles, and finding that very effective. Each treatment lasts 3-6 months but I usually wait 12 - 18 months before getting it redone.as it takes another 6 months after it wears off for the spacticity to become painful and/or unmanageable.

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  • 2 weeks later...

I stopped using baclofen as the relaxing of my bladder and bowel muscles was much worse than having spasms in my legs.

 

Would be interested to know if this treatment would/wouldn't do that.

 

💚👑

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