Follow-Ups to Answer from Expert Keven Mosley-Koehler, MS, MPH

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nana8 wrote at 2006-12-27 09:13:09
I too have a pain pump an experienced severe pain in my tail bone shortly after implantation.  My case is a bit different. Approx. 1 month after implant, my catheter severed.  The first clue was severe recurrent RSD pain then withdrawal symptoms began. I was taken to surgery several days later for a catheter revision.  That was to be done by simply removing the broken one and replacing it with a new one except....The doctor could not remove the old one because it had slipped behind the dura.  After much ligament and bone was removed...the catheter was never retrieved however a new one was placed right next to it in the intrathecal canal.  That's when my tailbone pain began.  I thought it was because of the extensive surgery but maybe not.  I often thought possibly the catheter was pressing on nerves.  My pain doc didn't know but the pain pump meds did not relieve the pain. I tried a few increases and that didn't help either.  My doc put me on a fentanyl sucker called "Actiq", which did relieve the pain.  I could control how much I took only when I needed it. I would place it in my cheek and within 5 min. I was pain free in my tailbone.  Against manufacturer suggestion, I always repackaged the sucker and went back to it when the pain returned instead of consuming the whole thing.  

I don't recommend Actiq to anyone however because when I stopped taking it, All my upper teeth started breaking at the gumline and now I wear dentures.  My doc finally decided to add fentanyl to my pump and that did the trick.  I take so little fentanyl in the pump that it does not even register on a drug test...  But it has continued to work.  I am allergic to morphine so I have dilaudid,bupivicain and fentanyl in my pump and thank God.  I AM PAIN FREE.  before the pump, i didn't want to live anymore.  i was in such agony.  The pump gave me my life back and even though my future is uncertain with the second catheter in my intrathecal space, I still advocate the implantation of a pain pump.  I was injured in 1999, implanted in 2001 and have been active and pain free since.    lots of luck to you.   I really think fentanyl made all the difference with my tailbone pain.  perhaps you can talk to your doc about it.  

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Jennifer wrote at 2009-02-06 02:26:19
I am a RSD patient and have a intrathecal morphine pump implanted 4 yrs. ago. I am only 32 yrs old. with a husband and three small children.  I recently had surgery to replace the catheter. I had ups and downs of withdrawals and times where i was so sleepy couldn't stay awake for days. with 2 ER visits with pain in my abdomen and lower back. leg pain.  They finally did a test where they saw the pump and the catheter. the catheter was tied up in a ball and wrapped around the pump. the pump flipped also. When the doctor tried to aspirate the side port. nothing came out. which meant the catheter was kinked. They had to move the catheter port to my spine, and also make a new pocket for the pump and reattach it. after the surgery, i couldn't even walk without stabbing pain from my tailbone. it lasted 3 weeks and had to due with swelling form surgery.  I know how hard it is on your wife and YOU! it is only by the grace of GOD that we are still married. My husband is a great and supportive man. and so are you it sound like. Hang in there. My doctor had to ask two of his colleagues to help figure out what what wrong. Be persistent, get all the tests. Don't give up.You are your OWN best advocate!!!!

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