Hey all. I work as a care aid to 3 quad roommates. One of the guys I work with has a backofen pump, and has been experiencing loads of issues. Long story short, he almost died when he had his pump replaced last month, spent 11 days in icu.
Anyways, this morning he went to emergency with spasms again, and now he's being air lifted to the big hospital in the lower mainland. He's been having varying degrees of spasms at night for a few weeks now. Some good nights, some bad. He's been taking small amounts of additional backofen orally (ok'ed by Dr)
Does anyone have any experience with a backofen pump having issues? Had anything similar happened to anyone? I'm just sick with worry that he's going through this again.
I don’t have experience with the baclofen pump, sarahm, but the doctors gave me baclofen (as a pill) in the hospital and for (time runs together) maybe a year after my accident. I got off of it when I researched and saw how harmful it is for us. But I also read that one must slowly quit taking it, as going off of it ‘cold turkey’ is dangerous. When they replaced the baclofen pump of the man you mention, did they, for a short time, abruptly stop his dosage of baclofen? Maybe an abrupt cessation of the drug, when they changed his pump, put him in the ICU.
Spasms are indeed annoying. I have clonus,...that is to say, the stump of my amputated leg kicks up and down without my consent. A gentle, legal herb called Kratom gives me a lot of relief. However, a doctor can’t prescribe Kratom. My guess is that some (medically approved) marijuana would be the right thing for the patient’s spasm,...and much less harmful than the baclofen. But, alas, suggesting this to your patient’s doctor would probably put you in the proverbial “doghouse”.
Yeah apparently there was issues with the pump they replaced with, so not getting any backofen for that bit of time caused severe issues. He's had this pump for about a month or so (they put a second one in and that's how he pulled through)
He's actually been on Nabilone before (basically synthetic marijuana) and didn't do well on it. Just recently he's been trying CBD oil, but stopped after a couple tries because he spasmed a lot on itm. We were hoping that was the cause of his "bad nights", but it was just coincidence since they continued even after he stopped taking it.
I will definitely look into that herb though, he takes lots of natural suppliments so definitely wouldn't be opposed to one that might help!
the one thing I dread is a failed baclofen pump. I'm on my fourth pump now with no problems — no failures. If a baclofen pump suddenly fails it can put you in a life-threatening situation. The spasms come back with a vengeance. You're likely to get autonomic dysreflexia, too. If you can avoid having a baclofen pump then do so. I wished I had never had one fitted.
You’re in Canada, sarahm. Kratom is such a wonderful, safe herb. It helps me with pain, spasms, and stress. The relief only lasts about three hours, but sometimes just that much relief is enough to help me through a rough spot. Sadly, the news doesn’t look good for Canadians getting the herb legally. Here’s a recent article on Kratom’s status. bestkratomcanada.ca/is-kratom-legal-in-canada/
I know there are a ton of potential risks that go with having a backofen pump, however my guy had had one for like twenty years and never had any issues with the pump. He's always been fairly spastic even with it though, so I couldn't imagine how he'd be without it. He says before he got it, he'd almost spasm himself off of his bed 😲b I'm glad to hear you've never had any issues with yours mikeq, and hope that continues!
Thank you for the link, vintage! What interesting info. He's still sedated in hospital with no word, hopefully they will find the cause asap so he can be released and I can tell him about it!
I have had issues with my pump and it’s not fun. Before I finished reading your post I knew it sounded like a bad case of baclofen withdrawal. It can kill. I’ve had a pump less than a year and it was perfect for about 5 months then spasticity stayed to return with a vengeance. Also started with headache, low blood pressure and dysreflexia (it was horrible). It took a little while to figure out what was causing it but we finally did. When they opened me up they seen that the sutures holding the pump in place had torn free and the pump flipped so many times that it knotted up the catheter. That was a few months back and I’m still trying to optimize my dosage and get it right. A pump ain’t nothing to play with