alansd Posted August 21, 2023 Share Posted August 21, 2023 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. Quote Link to comment Share on other sites More sharing options...
heathber Posted August 21, 2023 Share Posted August 21, 2023 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. Quote Link to comment Share on other sites More sharing options...
Madade Posted August 29, 2023 Share Posted August 29, 2023 Going to read more about this treatment. Thanks Alan. Quote Link to comment Share on other sites More sharing options...
GreenQueen Posted August 31, 2023 Share Posted August 31, 2023 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. 💚👑 Quote Link to comment Share on other sites More sharing options...
alansd Posted October 21, 2023 Author Share Posted October 21, 2023 On 8/21/2023 at 11:16 AM, heathber said: 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. I have reduce spasticity in my pec tendon, shoulder and neck, just starting at my latest dose increase, to get loosening in my super tight hamstring.My doctor says he will get my leg functioning better and my ar able to be used. i hope he's right,many pump users on the facebook forums have had theirs for 15 or 20 years and swear by them.The only negative is the thing sticks out a bit on my abdomen.It made me move up in waist size for pants.other than that,i grt a little foggy on thr day after dose is raised, but that dosnt last long. I'm at 169micro grams so not much... Quote Link to comment Share on other sites More sharing options...
alansd Posted October 21, 2023 Author Share Posted October 21, 2023 On 8/31/2023 at 3:35 AM, GreenQueen said: 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. Intrathecal baclofen is different, the pills were not good for me.read the pubmed.gov trials for ITB 💚👑 Quote Link to comment Share on other sites More sharing options...
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