Trying to get input pro cons for baclofin pump

[Bobby72]

I'm going in September for a trial for a baclofin pump and they will do an injection into my back. I'm not sure what to expect. So I'm asking for any advice or input. What was it like what to expect. Also what do I need to watch out for. I live close to 2 hours away from the appointment and outpatient treatment center. I'm kinda really scared to go through with this right now but my spasticity has gotten out of hand. I'm scared because my spasticity has affected my left side of my body from my sternum front to my spine in back and I believe that is affecting my respiratory as well but last time I had surgery I had a staff infection in my artificial hip area and I really thought I was going to die a few times back then. But I really also have had it with the spasms. I wrote when I first started talking about my issues in 2014 that I was having spasms so bad that I had fallen out of bed a few times a month then they would come and go then I had even stopped driving because of them safest thing I did for the safety of others as well as myself. I didn't want to end up hurting anyone or myself. I had to pull over and wait for the spasms to settle down before I could finish driving home on short trips even . So I'm glad for instacart. And then I order other things online from Wal-Mart. But I don't go anywhere else really other than my doctors and labs because it hurts to much. Anyway please let me know if you had any issues.

[Kimba22]

Hi Bobby,

Sounds like you've been dealing with this far too long, and sure hope this helps relieve your spasticity! It's been more than 14 years since I had my baclofen pump trial, so don't remember all the details about it. I understand your concerns, but I hope it changes your life for the better. I've also had some bad infections in connection to surgeries, but none with my pump (knock on wood, I never will).

Each place does things a little bit differently, but here is a detailed explanation from University of Washington https://healthonline.washington.edu/...nd-what-expect

I've also dealt with severe back pain, and that's what finally led to my diagnosis, after having symptoms that my PCP kept blowing off for years. My initial attack was misdiagnosed by an ER doctor as something else. During a family vacation about 6 months prior to my diagnosis, my mom made a comment that I walked like a tin soldier. I know that certainly didn't help my back!

The general neuros I'd seen finally said they didn't know what to do to help me anymore. I was on oral baclofen, zanaflex (tizanidine), and valium for my spasticity. I was also taking gabapentin. I should've been a zombie with all the meds I was taking! I went for physical therapy multiple times. My spasticity just kept getting worse.

The first MS Specialist I was referred to told me there was no pain in MS, and that it was all psychological. I remember asking if he ever had a charlie horse? He never answered. Just insisted I see one of his colleagues, a psychologist, for counseling. I tried that for several months. Didn't help. (Found out later pain hadn't been "officially" recognized as a MS symptom until a few years earlier.)

I finally found a different MS Specialist, who acknowledged pain did exist with MS. He also sent me to physiatrist who specialized in spasticity. By then, I'd been diagnosed with MS more than six years. After a few visits with him, he suggested the baclofen pump trial.

I had a positive response to it. They'll do up three separate trials, with an increase in dose each time, if you don't respond to it.

Back then, I was told to lay flat on my back for 24 hours afterward to try to avoid getting a spinal headache. (I put the back of passenger seat down for the hour drive home.) I don't think you're told you have to do that anymore, but they still want you to rest afterward. I live with family, so wasn't a big deal for me ask for help if I needed it. If you live alone, you might want to ask if someone can stay with you afterward, at least for a few hours. I've also been fortunate to never have gotten a spinal headache.

Later that day my legs got so weak, I could barely walk. That is one of the possible side effects. But for first time in years, my back pain vanished! For me, it took about 24 hours for the dose to completely wear off. My back was also a little sore from where the injection was done.

Unfortunately, my back pain never went completely away again after I got my pump. One of the reasons for that is because the dose I needed to completely loosen my back muscles was too much for my legs. But it's still been worth it, and has helped reduce my spasticity significantly.

Best of luck, and please let us know how it goes.

[90stangg]

it's been a few years since I went through the trial, I do remember that they had a pt in the room checking every few hours to see how loose I was getting. It's the best thing I ever did. It will take a little bit of time to get it adjusted but well worth it.