Sharing the lessons along the way…

What if you had two or three hours where you were nearly a completely fully functioning human being, free from physical pain or emotional pain?  What would you choose to do with that time?

Before I get into why I am asking these questions, let me give you a brief update on my surgery recovery status with the new intrathecal baclofen pump because it is indeed all related!

For at least the past six weeks, without a break, I have been in more pain than I think I have ever been in so far in my life from this new pump.  My PLS symptoms are mostly managed with the increases in the baclofen doses and I was beginning to try to increase my daily activities when I was thwarted into a life that only revolved around excruciating pain.

The pain is localized to the surgery sites—from the back area where the catheter goes into my spinal canal all the way around to the front area where the pump sits atop my abdominal wall.  Before I could get any more increases in dosage, the doctors had to rule out more serious issues that could be causing the pain first.

So, for at least three weeks, I either waited to have tests run or was having tests run, but was getting no relief from pain, nor was I able to function even though my symptoms of my illness were pretty well under control.  Once the doctors ruled out pump malfunction or infection, they were then pretty much done with me and told me there was no reason for me to be experiencing the kind of pain I was reporting. 

They then tried to pass me along to my neurologist.  Even the neurologist was confused as to why seeing him was appropriate when the pain was clearly localized to the pump areas.

This pump design is completely different from the other pump I had.  The Codman was simple, took up less room in my stomach, and this Medtronic pump requires an additional two inches of room where the catheter connects below the actual pump. 

It is in this area that the majority of the pain is and it literally feels like that part is pushing down on and scraping my abdominal wall, which is creating a whole host of other symptoms from simply sitting up for very long.  In addition to that pain, there is a burning pain that follows the same area from my back to my stomach and a pain and pressure in my spine in the area where the catheter goes in.

Finally, after several attempts to be heard and nearly begging for some relief, the pump doctors decide we could try putting in some steroids and numbing agent around the pump pocket (to prove to themselves it was localized pain, because clearly my word wasn’t enough). 

Pump design differences aside, I did have three surgeries within six months in the same area and the likelihood of scar tissue creating this pain was the new theory.

Twice now, we have tried the numbing agent and once some steroids as well.  For two to three hours after each time, I have felt like a normal, fully functioning person.  I could sit up and only feel the pressure of the parts below the pump pressing down and the back pain also eased during these precious few hours of relief. 

The first time, I was told it could last up to five hours (or a week), so I nearly had an emotional meltdown when it was over in three hours and all of the pain returned.  The second time, I figured I had about the same three hours (turned out to be 2 ½), but at least did not have a meltdown afterwards and was just grateful to be a fully functioning human with some pain relief, if it was for a short time. 

I do believe the initial steroid injection (those you cannot get many of) has reduced the overall acuteness of the pain, provided I do not sit up for very long at a time or try to do anything else either. If it is scar tissue, this could take a while to begin to try to do simple activities for daily living.  I am not sure what a while means, but we are nearly four months after the second surgery at this point.

What I look forward to at this point is my 2-3 hours of pain relief scheduled again for the afternoon of 7/26 and if it wasn’t the middle of July in Florida, you could bet that I would choose to try to walk my dogs!  Instead, I am likely to use that sitting up time to keep up with teaching my online classes. 

But really, what is important enough for you to choose, if this was the only time you had any relief from whatever pain you have in this life?


Comments on: "If you only had two hours…" (1)

  1. Well, as you probably know, I’ve been paralyzed chest down since age 21 due to car accident, so I’ve often fantasized about ‘what I’d do if…’ Let me say, i would be like some cruel joke to live as a functioning body for 2-3 hours, then yanked mercilessly back to wheelchair, but at same time, I’d kill for those few hours. Not sure what activity I’d do, but almost anything would feel like a Tiger escaping a small cage.

    I didn’t know about your situation, but wondered why I haven’t run into you at Jolli Mon’s. I send you much positive thoughts, really hope this nightmare comes to an end for you. Sometimes the ‘normalcy’ seems so far away, but hang tough, and that proverbial ‘light at end of tunnel’ will come, hopefully.



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