Sharing the lessons along the way…

Update About ME!

This may be the most detailed update about me you have gotten in a while.  As I was struggling with the continued on and off burning nerve pain prior to Amore’s heart failure, I lost focus on some of the other reasons I made the decision to remove the pump.

If I lose focus or focus in too intensely on one thing, I completely forget about everything else that makes up the bigger picture.

Many things are different now that there is no longer baclofen going into my spinal fluid, and no longer a pump and catheter tubing throughout my torso.

What I noticed the fastest was the improvement in my bladder function.  My bladder wasn’t contracting well and was causing urinary retention for almost as long as I had the Medtronic pump.  I didn’t have the same problem with the Codman, which is why it never occurred to me that it was related.

I put off going to the urologist because I kept having to go to pain management to try to get help with the pain.  The burning nerve pain was my primary focus for most of the first year and a half I had the Medtronic.

When I finally went for urologic testing, I ended up having to take two different medications to be able to pee. Almost as soon as we started decreasing the intrathecal baclofen, I started needing less of the medication.  It has been a few weeks since I have taken any of the medications for that.

Since my pain has decreased and my body is now adjusted to no baclofen, my blood pressure is also lowering.  My primary doctor and I are in the process of removing the blood pressure medication altogether.

The incidence of vertigo has also decreased considerably.  There was hardly a day where I was not having episodes.  I even went to physical therapy to try to help with it, but her exercises were making my visual migraines worse.  I didn’t have problems with vertigo at all until the removal of the Codman and then getting the Medtronic baclofen pump.

Once I started looking into the urinary retention as a side effect of baclofen, I also noticed vertigo as another listed potential problem.  I wondered if that might also improve, and so far it has.

As my back incision continues to heal, it appears the nerve pain is more off than on.  Last week, I went four and ½ days before getting it again.  When it is coming back, it is often less intense than it was.  There are certain positions that seem to stretch that lumbar area and trigger it, but I have gotten overheated lately and it did not trigger it.

I need the cane to walk, but am walking.  I need the cane to take steps up and down, but can take steps up and down.  I can drive short distances.  If I go where the stoplights are long or there is a lot of traffic, my leg starts to become uncooperative.

What else am I forgetting?!


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