How did I overcome my fear of the pump?

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This was originally posted on the forum of http://www.pudendalhope.org.  I was responding to someone who was asking how I overcame my fear of the pain pump and the risks involved….


How did I overcome my fear of the pain pump? How did I accept a) having a foreign object surgically implanted into my body, and b) the risks associated with the pump? I had the chance today to reflect on that…

I remember there was a place of desperation, desolation and hopelessness that I reached, that many of us get to…  when you have to make a choice. Are you going to keep trying?  Because you get to a point — whether it’s the first PT session, the first nerve block, the first surgery, or even a neurostimulator or pain pump — where the risk of NOT doing it feels worse than the risk of going ahead. At least it did for me. I was bedridden, in horrible pain, couldn’t sit, stand or walk. Days and nights merged together and I spent them with my pelvis elevated and packed in ice, with a heating pad on my abdomen. My friends were long gone, and I couldn’t even truly “be” with my family anymore… they were just hazy forms that brought me ice packs and medications. I really didn’t want to go on.

Fortunately, there was still a spark in me that refused to give up. However, in order to go forward, I had to accept something that had previously been unacceptable. And that was having a foreign object implanted in my body, with all the risks inherent in that.

The fact that there was a trial helped. I could do something temporary to see if it even worked. And the amazing, incredible relief I felt during that trial was something I’ll never forget. It was like the sun came back into my life. So from then on, going forward with the pump was a no-brainer.

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What about the risk of granulomas?

I was glad to read the study that was posted:  “At West Virginia University Hospital, we have implanted more than 700 intrathecal drug delivery systems (IT-DDS) since 1989, and have encountered two cases of granulomatous masses developing at the tip of the intrathecal catheter.” http://www.ncbi.nlm.nih.gov/pubmed/17285949

That’s not bad, right?  I googled a bit more and read a study by the NIH that discussed three patients who developed the granulomas who were on much higher dosages of morphine than I am. “These three patients were receiving high doses of morphine to control their pain (25 mg/d, 28 mg/d, and 45 mg/d, respectively) when they presented with signs and symptoms of thoracic spinal cord compression.” http://www.ncbi.nlm.nih.gov/pubmed/9588567

I thought the following was a very good article, that outlined the problem in layman’s terms:

Medtronic’s implantable morphine pumps have brought a miracle of pain relief for thousands of patients. But for an unlucky few dozen, the hockey puck-sized device, which is tucked inside the abdomen, has brought disaster.

The problem is granulomas, masses of inflamed tissue that occasionally develop at the tip of the intrathecal catheter. If a mass grows large enough, it can compress the spine, eventually causing paralysis. A smaller mass can block the catheter, leading to failure of pain control.

The number of reported granuloma cases is small, perhaps as many as 100 individuals out of the approximately 45,000 who have had pumps implanted since the device was approved by the Food & Drug Administration in 1991.

“I don’t think anyone can quantify the incidence, since it is so rare,” said Rick Boortz-Marx, M.D., director of pain medicine, University of Minnesota. See more at: http://drugtopics.modernmedicine.com/drug-topics/news/beware-granulomas-linked-intrathecal-pain-pumps?page=full#sthash.vTNnj7Uh.dpuf

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FINAL NOTE: Interestingly enough, my doctor is more concerned with the amount of bupivacaine in my pump, which is the drug I require for pain relief rather than morphine. I was told it must be at or under 20 mg/day of bupivacaine or there is a risk of developing a granuloma. I am at exactly 20 mg/day. I am at 5 mg/day of morphine, and 150 mcg/day of clonidine.

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