I just posted the following message on the IC-Network forum. www.ic-network.com
I am hoping to educate other sufferers with IC and/or PNE about pain pumps, as I have discovered that some have pursued the pain pump and had miserable trials, because the doctor did not have the experience or knowledge of the medications which would be effective, or the correct placement of the catheter tip in the spine to deliver the medications.
Hello – I used to post regularly on this forum and am so grateful it is here. I’m grateful that Jill started the IC Network when she did, and included this forum as part of the website. It has brought hope to so many of us, and connected us across the world.
It has been 2 or 3 years since I posted my success story on this site, so I thought I would post an update. (I hope this is the correct area to do so.)
In October of 2012 I had a trial for a pain pump at UCLA. My doctor is Joshua Prager, MD. The trial was sooo successful (I was able to walk, sit, laugh for the first time in several years) that in November I had the surgery to place a permanent pump! One of the reasons it was so successful is that the main medication used is bupivacaine (Marcaine I believe is the brand name that many of us are familiar with). It is an anesthetic, so it “numbs” the targeted area, which for me is my bladder and the pudendal nerves! This is not the typical way a pain pump is used – usually it is for back pain, and morphine or other opiates are used. For people with bladder and nerve pain, morphine does not work, and I have heard horror stories from people I know who have gone through awful pain pump trials. I am trying to educate IC and PNE patients about this — DO NOT have a pain pump trial or get a pain pump unless your doctor is experienced and comfortable using bupivacaine and other “off-label” drugs in your pump! If this is something you are interested in, I have a blog about my journey, which also goes into more detail, at: www.icandpne.wordpress.com