Sharing the lessons along the way…

I was thinking that it might be a good idea to share with you part of my decision-making process for removing the pump.

Codman Intrathecal Baclofen Pump

Codman Intrathecal Baclofen Pump

Many of you already know that my first intrathecal baclofen pump was made by Codman and looked like this picture.  There were no bells and whistles, no recalls by the FDA, and no pointy parts to the design.

I had no problems with this pump.  At least, not until it got dislodged and came undone.  At that point, the plan was to implant a smaller version of a different kind of pump–Medtronic’s pediatric pump.

On surgery day, we learned that the pump pictured here was my only option.  It held more, needed refilled less, so hastily, I agreed.  I was prepped for surgery at this point after all.  (Seriously, click on the image and take a look at the pointy stuff.)

If you have read any of my blogs in the past two and 1/2 years, you know that this pump hasn’t been without its problems in my body.  I have chronic nerve pain because of it.  I have activity limitations because of it.

Medtronic Intrathecal Baclofen Pump

Medtronic Intrathecal Baclofen Pump

After more than two years of all of that, I remained hopeful that this pump and my body would figure out how to play nice.

Interestingly enough, all of this wasn’t enough to make me decide to remove the pump.  I needed a tipping point.

After my Good Grief post, I finally followed up with a urologist, which was long overdue.  I’d been experiencing urinary retention for more than two years in varying degrees.

When I connected the baclofen to the urinary retention (and I didn’t do this by myself), and had the conversation aloud with my PCP, I was at my tipping point.

Oh, and I didn’t mention the whole Medicare debacle.  To throw that into the mix, I could see clearly that I couldn’t sustain private pay pump refills for long under any of these conditions.

So, I move forward with my decision to remove the pump, on my terms, and with time to get whatever I need after the fact like medicines, etc.  I am open to trying a pump again in the future–a Codman–but after my body has a chance to heal, if I can keep up a higher weight, and if I need it.

My plan is to try a combination of the rehab I was doing before I got the pump and add in some alternative medicine.  Of course, I also plan to build a toilet paper tower unlike any I have ever built before.


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