I’m writing this because of emails I have received from some of the original DHADM posts. Not much information is out there about this procedure. So here is my story and troubles I have encountered:

In my early 20’s I had open  heart surgery to correct a birth defect in my heart, a PDA (Patent Ductus Arteriosus). I went in for a clean bill of health and ended up having surgery 4 weeks later.

Due to the original surgery, major nerve damage was done to my intercostal nerves (the larger nerves that run on the inside of the ribs – so I’m told). I lived with the pain for 10 -11 years until I couldn’t function any more. The only way to describe the pain is that on a daily basis it felt like someone was pulling a knife from my chest to my back. I was almost bed ridden.

After trying for years to get help and comfort I found a pain clinic that wanted to start from scratch. Stop everything and start over. I agreed.

I was on every pain killer known to man and every other drug you can imagine (neurontin – 4000mg/day, amitriptyline – 200mg/ day and many others) I was given the max of everything possible and it didn’t make a dent in my pain.

It was time to move to the next step, injections directly into the intercostal nerves. After 20-30 of those (one of which one punctured my lug), a spinal tap, leaking spinal fluid…and the list goes on, it was clear the treatment was not a long term solution.

The next phase was to have an ANS implant (IPG) trial (everything external) before the actual implant. The trial sucked but helped the chest pain so we moved on to having the internal installation in my back, with wire leads that ran inside my spinal column to the effected nerve damage. The result was to feel the shock stimulant instead of the pain. It was a hell-of-an-ordeal. But it worked. I went from having trouble getting out of bed in the morning to being almost back to normal.

The problem with this solution was the battery life (of the implant). 3 years and I would have to be cut open and have a new one put in.

The 3 year mark was up in November of 2006. The battery was done. I had a new battery installed. The problem was the placement. The new doctor (now here in Seattle) wanted to move the battery to my abdomen. The back was a problem for 3 years. So I had the new battery installed and moved from the back to the front. Which took having an extension lead run from my back through my abdomen, resting above my waist on the left side.

This took some additional surgery and some wiring. It was very painful. I now have another incision in my front and a “re-open” on my back but they didn’t have to replace the wires in my spine. By this point I’m looking like Frankenstein.

Everything went well, another 30 stitches, a 7 year battery, a month or two recovery and I was feeling good (respectively).

A month goes by, January 2007, while driving I had a huge electrical shock inside. My fingers curled and my toes pressed into my shoes. Something was wrong. I would have crashed my car if I didn’t have the massive magnet that turns off the device.

I went into the doctor and told my story. The x-ray showed that the wires that went from my back and into the device had broken off. The wires looked like they had just snapped off or been cut with wire snips.

The same week, I had the entire surgery all over again. New device, new wires, 2 new incisions and another 2-3 months of recovery.

In a matter of 4 months I have had the same surgery twice because of faulty equipment.

The long and short of it is that I’m no longer in pain from the first surgical mistake, the years of trial and error have caused daily pain of another kind.

I’m in less pain but still uncomfortable because of the repeat procedures but on the mend.

The moral of this story is that recovery is hard and the road to it is sometimes worse than you can imagine. Living with technology inside you is not an easy life, the decision to have an implant is not something to take lightly even if it’s the only solution. It can be as frustrating and painful as the problem they are trying to fix.

In the end, the result allows me to have a somewhat normal life when before I was afraid to get out of bed. Now I have a device that has a life span of 6-7 years which is more than double the life span of the previous one.

It was a good thing to do but it’s been a hard and long process. I write this for those of you that have asked about one of my first DHADM posts. Those of you that think pain is something you have to live with. Pain may never go away but the degrees of pain that you live with can be controlled.

I’m not a great writer so forgive me for anything that doesn’t sound right or misused…this is more for anyone that is dealing with similar issues and getting an understanding of what it takes to deal with it.

The saga continues. I now have had a spinal Stimulator installed permanently and am on the 3rd week of recovery. Everything is going well, the nerve damage from my open heart surgery is much better. The only pain I have is from the battery which is located just above my waist. Really amazing technology, I can feel the electrical pulse running around the front of my chest and down my spine. If I cough or sneeze, I can feel a shock in my arm and down my left leg.

I have a couple more weeks of taking it easy. To see the prior stories, Click Here

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Phase One : Test Run
High Tech Implant : Phase One