Atypical Multiple Sclerosis

Well, it’s been two weeks since my surgery to implant my baclofen pump.  The surgery itself went great. I am healing nicely and the pump is working great.  I am still not fully weaned from the oral baclofen, but making good progress. 

Apparently, my body does not like either anesthesia or percocet.  That was the one hitch during the recovery in the hospital.  So, on Monday July 28 I was trying to recover from surgery while getting sick.  Oh yeah, one more thing. Because implanting the pump is one HUGE lumbar puncture, you must lay flat for the first 24 hours.  I knew this going into the surgery but didn’t count of being sick from the meds.  The next day they switched me from percocet to vicoden.  Much better! Sigh of relief!  

The nurse, which I had the prior day, even said “I bet you second guessed your decision yesterday.”  That was and understatement.  But, I did keep reminding myself that having a baclofen pump is a process. First you must heal from the surgery while transitioning from oral to liquid baclofen and going through physical and occupational therapies.

The big question of course is did it work? Does it work?  Yes!  For me, the pump is working.  I am walking with only a cane now.  I packed away the forearm crutches and leg braces.  There are still some nagging stiffness, but as I said I am still transitioning.  

I guess one of the hardest parts of this whole process for me, and it is really why I didn’t initially jump at the idea of a pump, is the idea of having this device in my body.  It is like a mental game I play.  Do I want to live the rest of my life (41 years old now) with this artificial device in my body?  Yes, it definitely helps me walk, reduces pain level, and most importantly I can the relief in my son’s and my husband’s faces.  So I logically and intellectually tell myself this is the best.  

After all the chemo and now the pump I feel better than I did three years ago when I first walked into my current neurologists office.  The catch is with atypical multiple sclerosis that acts just like primary progressive multiple sclerosis I can’t help but think I am on borrowed time.  Really when you look at life there are no guarantees of health or longevity so in a way we are all on borrowed time.  Makes me want to make a difference in this world, even more than I did before.  I feel a pulling toward helping people because through all of this I have learned that we are all suffering in some way whether it is outwardly visible or inwardly destructive.  All of this, the past three years, I have met people that have no health issues that are miserable, unhappy or people who seem to have it all yet they are nasty or not quite right. We all suffer somewhere.

Back to the pump.  On the afternoon of July 29 I was transported to a rehab hospital where they should have adjusted the pump and given me PT and OT.  I somehow slipped through the cracks and no doctor made any adjustments.  In fact, I never saw a doc there despite my constant asking and badgering.  So on Friday August 1 hubby (who was by side the entire week, even sleeping the first night in the hospital because I was so sick) and I left the rehab hospital.  Filed a complaint and walked (Yes, I walked) out of that hospital and into my neuro-rehab doc’s office where she explained the entire pump, precautions, expectations, and made the first adjustment.  

Both the neuro-rehab doc and the surgeon went over the pump before the surgery.  I was well aware of what I was getting into before I jumped.  I know since we (hubby and I) made the decision to undergo implantation of the baclofen pump I have heard other people say they were not prepared for or expected too much from the pump.  Again, I think this is what is wrong in the medical field.  Too many docs and others see us as patients (things like a chair,the manilla file folders that keep our medical history) and not people.  I have learned to ask any and all questions, to research as much as I can.  And most of all I feel very lucky and happy to have the doctors I have.  Nothing can replace trust and caring when it comes your health.