Wednesday, July 25, 2012

Intrathecal Baclofen Pump-(WARNING GRAPHIC)The power of the pump.

     After years of dealing with uncontrollable spasm and pain and spasticity I decided to take a leap of faith.  I reluctantly took the plunge along with about 60,000 other worldwide users (thats it!) to seek a better more comfortable life.  Believe me I am the last guy to put a foreign object inside me and by far the most "in tune" person you may ever know.  Nonetheless I found the areas best neurosurgeon and had a Medtronic Intrathecal Baclofen Pump installed in my abdomen.
     I could not tolerate oral baclofen.  It made me sick, listless, and depressed.  I tried tizanadine, clonazepam and everything else including physical therapy made things worse, pilates, medical mj, atlas chiro, you name it.  Nothing helped and I have become more and more immobile.  As the MS Society boasts, MS really does stop people from moving.  At least it has immobilized me.
     So, as far as ITB goes it has been quite a journey, and a lesson in patience like I never dreamed, or was warned.  The medtronic rep was at the bedside prior to insertion and told me there would be a process, but nothing to this extent.  So I will not give all details, basically because I don't want to scare the shit out of anyone, but I will include some actual accounts of my story.
     The surgey is done under the good night Irene type of anestesia.  I was out like a light.  It seemed like a few seconds and I was in the ICU, where I would be monitored for 23 hours.  Huh, bullshit.  Monitored my ass.  More like tortured.
     The pump was set at the standard distribution setting, and now I was receiving micrograms by way of a catheter in my spine, as opposed to 60 mg of shitty ass baclofen orally along with botox and vicodin, all which did nothing and was ruining my lifes quality, not that there really is much currently, but please bear in mind if you are a candidate, it's a work in progress, and nothing is happening overnight.
     Ok, so night one was basically hell, as I was taken off of oral baclofen entirely, and went into a major withdrawl and exacerbation of pain.  All Dr's do it differently.  Some taper some don't, and considering he did not authorize any oral I suffered insanely until they could get him on the phone.  After almost 2 hours I received 10 mg and things calmed down, but by then the damage was done, physical torture and mental strain.  I would have preferred being waterboarded.
     The next morning the surgeon showed up and cranked up the flow rate on the pump, figuring this would fix matters, and after a quick bite sent me packing.  I stayed with my parents at their home.  They set up a makeshift recovery room in their family room and as the day passed I became more and more listless.  I was a complete noodle, complete without any muscle tone, and I couldn't even support myself in a chair.  Scared, confused, horrified, and basically shitting my pants, my dad who is the local district Judge called his friends at the Fire department, and within minutes I was rushed by ambulance back to the Hospital where the surgeon was cutting into another subject.  The ambulance was without A/C and considering it was 104 degrees I thought I was going to die.  Correction, I had hoped to die.  Considering my condition the bumpy ride kicked my already kicked ass, and upon arriving at the hospital met the surgeon who dialed the pump down.  I was in shock still, and the trauma of this thing was relentless, and surely never explained in any manner to me that this bullshit was a possibility.
     Back home to Mom's where I did not leave bed for roughly six days, and a 7th day house call by the surgeon to again dial the pump down considering I could not move a muscle.  Everything hurt and my back spasms increased to much higher levels than prior to surgery.  Bullshit, and believe me I am leaving a lot of detail out because it may traumatize readers.  Intrathecal Baclofen has been known to turn lives around, but seems to be turning my already upside down life further down.
     Oral baclofen was reintroduced, specifically the opposite reason I got the damn pump in the first place, and after another week bedridden I had to get up.  I am so sick of missing out on life and why is it doing things that are supposed to help me are merely debilitating me.  It was necessary to see the surgeon and so into the van Mom and I dragged my noodly ass up and into the office.  It was time to remove the staples, another treat, from the belly and back incisions, and come up with a plan, all the while the Dr. was and is very confident that this thing is going to help me.
     The pump was cranked to its lowest setting and again I was taken off oral Baclofen, and again experienced some crazy ass withdrawl stuff I would rather not share.  Who is ready for a pump so far?
     Fast forward a whole lot of suffering, bed, and bullshit to today almost two and a half weeks later I am still a noodle, but not without back pain and spasm, which I am told may be secondary to the low tone the pump has created.  Now working with a specific pain Dr, the pump was emptied, cleaned out and a 50 to one diluted solution of baclofen reintroduced.  The goal is to now actually get SPASTICITY BACK!!!! Meanwhile, as my luck would have it the mechanism of the pump will deliver the old dose that is still in the catheter for 258 hours. Yes 10 more days of hell until the new potion kicks in. Amazingly the equivalent of 2mg oral baclfen is being pumped into my spine.  Thus, the power of the pump.
These are just a few pictures including the belly shot of the pump under the staples and the general area of the incision.  How does one prepare oneself?  All I know is Mom and Dad are a blessing and beyond God sent, working me through this in so many ways.  My belly looks much better today, but I am very upset as to what I have been through, and without any guarantee of what will happen in ten days.  Once again in an effort to live a normal life this ugly beast (MS) is cracking up, laughing, getting its way.
I don't want to really scare anyone from going through such a glorious journey, but rather please be aware that having a hockey puck implanted in your stomach could possibly disrupt your life for quite some time, and from what I now understand the process is about 3-4 months.
      For me the jury is still out, considering I am basically homebound, pissed off, listless, like jello, bummed out, and have been out of work for almost four weeks. I am not the typical case, but then what really is? Nobody told me my outcomes were a possibility, basically for one reason, they don't know.   I have had to again completely change my ways of cleaning, dressing, etc, requiring in home nurse assistance with everything.
     "Give it a try it can always be removed."  This is one of the great lines I now reflect upon.  At any rate, I am in it to win it, and there is no turning back at this point.  Time for another Mountain Dew, something I never drank in my life, but a necessity to alleviate the two week spinal headache I am experiencing as caffeine is supposed to help.
     Reality.  This is reality.  This is MS.  The bitch that "stops people from moving, as the MS Society so eloquently describes it.   Anyway time will tell.  It can always be removed!!!!
to be continued....

3 comments:

  1. About time someone seriously worked on finding out what causes
    this damn Ms and CURE it. Enough so called management.

    ReplyDelete