My spasticity has gotten worse in my legs. I did a baclofen pump trial about 20 years ago. Made my legs too weak. Now I have much tone, especially my right leg. I don't think much had changed. I am still ambulatory, some days use nothing, trekking pole(s) or a rolator, depending on distance. They don't know why I am flexible despite the spasticity and/or winter rigidity . So I wonder what has been other folks experience with baclofen pump, especially where they place the device to fill up the pump every 3 months. Is it bulky around the waist? How long did take to recover from surgery? Any details I should know. I have done a baclofen pump trial before.
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TonyiaR7
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I was worried that a hockey puck size device would be noticeable. My doctor said it would be. However, I don't think it's noticeable at all. Unless your stomach is very flat, I think you will be okay with the appearance.
I went home the day after the surgery, and it only took about two weeks to heal, and I wasn't in a lot of pain.
The pump works very well for legs. For arms, neck, etc., not so much.
It may not get rid of all pain, but you will like not having to take any (or not as much) oral baclofen, as you will feel less sedated and more alert. To me this was the best aspect of it.
Pump refills are a breeze. They take five minutes and are basically painless. Whenever you get an MRI, your pump will stop from all the magnets. When the MRI is over, it will usually start up again on it's own, but someone needs to verify that so you don't have withdrawal if it stops. I just go to my doctor's office when I'm done, but some MRI places are trained to do that.
The amount of baclofen you get can be adjusted up or down to the tiniest amount, so it's really customizable for you. Sometimes they can even give you a device to give yourself a bolus dose if you need it due to a spasm.
It's easy to remove if you don't need it anymore. Also, the battery is only good for seven years, so the pump will have to be replaced at that time. The catheter part, I'm told, lasts forever.
I’ve had my pump for 12 years. It’s been replaced once and it was not a complicated procedure. The catheter is the original. The pump refill procedure takes just a few minutes. The original surgery was an out patient procedure and healing was quick. I don’t notice the pump except when I bend over I can feel it sometimes. It was placed below my waist on the left side of my abdomen.
The reason it’s placed on your left side- doesn’t interfere with your major organs…I’ll be getting a pain pump on 5-2 added with baclofen. Its all new to me.
hi Sweethearttonvday they have discussed using both baclofen and pain medication. I was on a fentanyl patch for a long time and in the last 2 years, I was weaned off it. But I am in much pain. My muscle spasms are worse with colder weather and I finding that I need pain medicine still. Sometimes i don't think realize pain I am in. Gabapentin is not working for me. I have been dealing with muscle spasms since my second relapse back in 1993; after my second child. I was like a quadriplegic with thar relapse; but I recovered within 2 years. But over the years I've gone from RRMS to SPMS and my spasms can be very bad sometimes. . Thanks for the encouragement.
Hi TonyaR7 I have taken Baclofen for several years now 10 mg tablets. I have not had any experience with a baclofen pump. Because of MS I get really bad cramps in my feet & legs some times they run up & down my spine. I can take a Baclofen 10 mg tablet & in a few minutes I feel the spasm slowly melt away. I was recently in hospital for 'community' pneumonia I had to beg for them to give me 1 baclofen as spasms were running all over my back. I am suppose to get 1 baclofen 3 times a day with a floater for if necessary. I have heard the medical people had changed & didn't believe it. After this stay I believe they went to hell in a hand basket.
I have been on oral baclofen for 20+ years. I have had MS since 1998. I am on 20 mg x 5 a day. I am glad you can use the tablets Nc you use them as needed. I have muscle spasms since the birth of second son. After. the birth of my first son I had mild symptoms and recovered completely.
Good morning, I am on my second pain pump and due for third one now. I have absolutely loved mine it is in my right front just above belt line and is great hardly noticeable at all. Mine is morphine not baclofen, but it is available and can be mixed. Takes a little bit to get amount released but well worth the effort. Also have a remote for bolus which is great. Good luck 👍🏼 🙏😉
Hi, TonyiaR7, I don't know if you are familiar with Dr. Aaron Boster, an MS specialist who has a YouTube channel. When I first heard about him, I thought maybe he was some weirdo claiming to cure MS with herbs or something just because I don't associate YouTube with reliable medical content. Happily, I was wrong. Dr. Boster is a real MS doctor with a gift for explaining things in a way tha you can understand them. I watched this baclofen pump video last night, and I thought you might find it interesting. I learned some things, particularly about alternating physical therapy with increases in dosage, which my doctor did not do, and which I think I could still benefit from. While searching for the video today, I saw that Dr. Boster has authored papers about best practices for baclofen pumps. It's only about 13 minutes long. I hope you find it helpful!
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