What to do? What to do?

I am in a position where I am having to make a decision regarding my intrathecal catheter pump (pain pump, ICP) and figured if I write it all down it might make my decision easier.  So what is an ICP you ask?  Here is what my pumps manufacturer says on their website,

http://professional.medtronic.com/pt/neuro/idd/prod/index.htm#section15

“Targeted drug delivery (also known as intrathecal drug delivery) uses the implantable SynchroMed^® II programmable infusion system to deliver pain medication directly to the intrathecal space surrounding the spinal cord.

Because targeted drug delivery transports pain medication directly to the receptors in the spinal cord, patients may achieve pain control with smaller dosages compared to oral pain medications, thereby likely reducing side effects.^1,2

 Now why would I have a problem replacing the unit when the time comes?  To answer that you have to know the history of first how I came to need the device in the first place, so in as detailed chronological order I can get it here it is.

May 11, 1993  On returning from Fresno, California from a work related conference on Hwy 99, there was work being done and CalTrans had the three lane freeway closed down to only one lane so at some point all the lanes were at a stop.  When only seconds after stopping a drunk driver swerving to avoid the off duty fireman behind me and the insurance adjuster behind him, went onto the right hand shoulder, lost control and came back onto the freeway rear ending me at 75-80 mph.  The impact moved my vehicle (I had my foot on the brake) 15-18′ into the vehicle in front of me and it into the Pepsi truck in front of her.  This caused major spiral nerve damage from the tail bone up to the middle of my back, bulging disc and more.

In 1998, after five years, the treatment I was getting was not doing anything and I was being told, “You are going to have the pain for life and need to deal with it,” by more than one general practitioner that I asked for another opinion from a pain specialist.  Within a month I was referred to a specialist who on my first appointment told me that within ten minutes he would be able to tell me the issue and a possible partial cure, and he did.  He then suggested I take a trial period and try the Medtronic, ICP (shown above).  I did and what a difference, it decreased my pain by at least half.  By years end, 1998 I had my first 20ml pump inserted into my stomach and a catheter ran from the device to my spine.

In the last quarter of 1999, not eight months into the device being inserted the battery that was suppose to last 4-7 years failed and of course the only actions that could be taken was to have it replaced.

Then in 2002 the second pumps battery also failed and it also need to be replaced, via out patient surgery of course.  This is also about when I started noticing that when ever I would get close to the unit needing to be refilled and the ICP would slow (by design) to ensure I always had at least some medicine going into my spine, I would start aching in they elbows, knees, be very weak, felt as if I was on fire and every time we would go in to get it checked we were told I had the flu and it was nothing to do with the pump.  To this day if the pump gets to low this happens.

This pump lasted until 2007-2008 when the battery went and the unit was replaced with a 40ml size ICP.  When the time came to refill the device 7 weeks later, the nurse practitioner and then the doctor after sending me for x-rays when they could not locate the fill port, determined that the unit was “INSTALLED UPSIDE DOWN” and the fill port was not accessible.  This took almost a month before they received the approval to go in and reverse the unit, fill it and another two weeks for me to get over the withdrawal symptoms and it was a month with having to use oral narcotics which never work well with me.

My next pump lasted from 2008-2012, battery issues again.  The next pump (#6)  when of course the battery failed three years early and the catheter that was inserted was determined to have issues with the viscosity of the medication and it also needed to be replaced.  So when I should have been getting .05 ml (example) a day the catheter issue was only allowing .03 ml a day through.  Then in 2013 with this same pump I went in to have it refilled and was put into the ICU due to what is called a, Pocket Fill.  A Pocket Fill is when instead of the replacement medication being inserted into the pumps fill port, the needle somehow came out of the port and 40ml of Fentynal was injected directly into my stomach and within seconds was being rushed to the hospital due to a major unintentional overdose.  Never was this possibility mentioned to me in the prior 15 years of using the device.  I was told I was extremely lucky as Fentynal is 100 times stronger than Morphine.

It is now been four years since my current pump was inserted and was suppose to last until 2018.  At my most recent refill appointment I was informed that the unit had 3.97 ml more left in unit then what the controller was reading.  Their closest guess, are you sitting down?  The battery is going out earlier then it’s suppose to by 18 months and they will need to monitor it until my next refill to see if it continues to be off or if it was just a glitch.  So until then I get less medicine per day, no wonder my pain has been increasing and my body is overheating and sweating more than usual, my sleep is off, more than usual.  No, it’s not the flu!!

So with all this history and every doctor I have seen saying, “There is nothing out there that competes with the ICP in terms of pain control.”  Minimal side effects from the Fentynal as it is placed directly into my spine and not my blood stream, which reduces the number of narcotics I need to take for the remainder of my pain. However, the chance of not coming out of the doctors office alive in the event of another “pocket fill” which is a possibility every 6-8 weeks when I go in for a refill.  Here’s the question of the day,

What would you do?

Do you or someone you know have a chronic pain condition?  Are they using the ICP device?  What is their experience with it?  What is your regimen for treatment of the pain?  Is someone out there using another treatment that’s working for them?  I would really like to know, I have about 6-14 months before they will replace it, or sooner if it the battery. All of this and I am just not sure I want to go with another ICP unit or try some other treatment and hope it gives me somewhere near the relief I get from the Intrathecal Catheter Pump.  FYI: I have tried, acupuncture, acupressure, various forms of massage, chiropractic agencies, Tens unit, Eastern pain patches, Yoga, Tai Chi, Qigong, Hypnosis along with other natural, Eastern and Western treatments.  I think every opioid for pain possible and more.  I look forward to hearing what you use and how its working for you.  Thank you for taking the time to read this post.  I am sorry for the length of this post.

Thank you for taking the time to read this and to your response.

Thank You All,

Richard K.

(Certified Caregiving Consultant, Author, Caregiver, Notary Public, Husband, Father, Son, Brother, Caregiving Product Reviewer)