Baclofen Pump Fear — Reeve Connect
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Baclofen Pump Fear

Zcollie Moderator Posts: 239 Moderator
100 Likes 100 Comments 25 Awesomes First Anniversary
I know I have posted about a baclofen pump before but I am still unsure if it would be the right decision to make. I want to start off by saying I absolutely do Not want to have a foreign object implanted inside my body. I fear a lot of things can go wrong such as infections and feeling it constantly underneath your skin. Plus, I have heard bad stories others have gone through after getting the pump. 

I am a C4 incomplete quad. For the past 10 years I have been taking Baclofen everyday to help with my crazy body spasms. I recently got a new adaptive car and my drivers license which is awesome but I feel it is scary at times when I have a spasm driving. I take 80mg of baclofen a day and it takes them from a 10 to 9.5. I tried a new medication Tiazadine and it didn't last long and wasn't strong enough. Now I am on a third medication robaxin and its not as strong as I need. My next step would be getting a pump. I need to find something that relaxes my body throughout the day so I can drive and be more independent. So far the only thing that actually works and makes a difference is THC but I cant be doing that everyday before I drive and I don't want to be high all the time. I tried CBD by itself and it wasn't strong enough.

I am also worried that it will take away all my spasms and my body will start to atrophy. My spasms over the years have kept a lot of my muscles in my body. I can stand and am worried I won't be able to stand during PT anymore. I heard someone say that the pump is great but noticed is was harder for him to get erections. I worried it will take that ability away from me and being able to ejaculate, which is something I can do now. I would be getting the pump just so I can drive. My independence is extremely important to me and if my only option is to get the pump so I can drive I will. I know everyone is different and in the end I will have to make my own decision. I am interested in hearing others opinions about this.   

I have heard stories about people going into withdrawal from the pump and other complications, but I have also heard other stories of how it changed peoples lives for the better. 
Accept what is, let go of what was, and have faith in what will be. -SONIA RICOTTI


  • BrittanyFrank
    BrittanyFrank Moderator Posts: 65 Moderator
    Second Anniversary 10 Comments 5 Awesomes Name Dropper
    I have some of the same fears when it comes to spasms and atrophy. Have you had the baclofen pump trial done? It was amazing, but ultimately I didn't want a foreign object in my body either. Have you ever looked into a rhizotomy?
  • Zcollie
    Zcollie Moderator Posts: 239 Moderator
    100 Likes 100 Comments 25 Awesomes First Anniversary
    @BrittanyFrank I am in the process of setting up an appointment so I can do the trial and see how my body reacts to it. So you decided not to go with it because you didn't want in your body? How are your spasms now? No I have not looked into a rhizotomy. 
    Accept what is, let go of what was, and have faith in what will be. -SONIA RICOTTI
  • ambercollie
    ambercollie Moderator Posts: 191 Moderator
    100 Comments 25 Awesomes Second Anniversary 25 Likes
    Update; Zack Collie DID go through with getting the Baclofen pump in July 2021 the trial had some complications but the actual pump surgery went very well, recovery was good and adjusting to the pump was smooth Being his mom/caregiver both Zack and I agree it has been a positive thing and helps with daily life to keep spasms away. He is also off all oral baclofen and take way way way less dose. I would recommend this to people with bad spasms. Zack fought his crazy spasms for over a decade. Wondering why we waited so long now.