There are risks in treatments for pudendal neuralgia, ic and other types of chronic pelvic pain. It is something each individual has to come to grips with and we are all different. What works for one person does not necessarily work for another.
On the pudendalhope.com forum, an issue was brought up about the risk of developing a granuloma at the site of the catheter tip with the pain pump. In worst-case scenarios, these granulomas can compress the spinal column and cause paralysis of one or both legs. As I responded to the post, it took me back to the time I decided to try the pump in the first place.
So why did I decide to try the pain pump anyway? It took a lot of years with pelvic pain, ineffective or painful treatments and countless doctor appointments with no help or hope… I remember the feelings of desperation, desolation and hopelessness. And the moment when I had to make a choice. Was I going to keep trying, or not?
There are some points along the path — whether its the first PT session, first nerve block, first surgery, or even a neurostimulator or pain pump — where the risk of NOT doing something feels worse than the risk of going ahead. At least that’s how it was 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 pain pump was a no-brainer.
What some of the research says …
Fortunately, according to several NIH studies the incidence of granulomas is quite low. “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
Another study reported by the NIH discusses three patients who developed granulomas who were on much higher dosages of morphine than I am (I am at 5 mg/day.) “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 good article, which 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/dr … nj7Uh.dpuf