new sacral/rectal pain with stim & after removal
Posted: Sat Apr 13, 2013 12:51 am
I've been away from the forum for awhile, will summarize the latest. 5-1/4 years since left PN decompression by Dr. Hibner. 70%+ improved at 1 year postop, completely pain-free sexual function for 2 years postop but with some increase in preop pain. At about 8 months postop had a brand new symptom of intermittent hyperarousal (never had it in the 8-1/2 years before surgery). At 2 years postop pain-free sex went away when the severe left vaginal wall pain with penetration returned, also sometimes discomfort with arousal. Dr. H did pelvic floor Botox at about 3 years postop which didn't help much. He had discussed re-do surgery if Botox didn't help, but then decided I wasn't a good candidate. Out of options and discouraged, just did pain mgmt and was coasting along in pain.
In Nov 2011 underwent sacral neurostim trial which significantly helped the vaginal wall and labial pain, 70% less meds. Like some others I've read here, I did have very sharp midline sacral pain during and for about 1 week after the trial. Also some bowel frequency which also resolved quickly. No rectal pain. Decided to proceed with implant after passing the psych eval. Knew the stim wasn't going to cure anything, but we knew the left PN was the issue and didn't see any other choices. In Dec 2012 got a Medtronic Prime Advanced non-rechargeable stim implanted at left and midline S3 I (I think). Lots of scar tissue in the left sacrum (presumably from Hibner's surgery - it wasn't there preop) prevented the lead from going as far as desired, but I'd done well enough with the trial. Interestingly, I had NO sacral pain or bowel issues following the implant itself. What I got during the trial was from all the lead exploration until he settled on location, and from lots of programming. At my 4th programming session during the trial we finally got the stimulation way below the sacrum, and the sharp pain went away several days later.
Plugged along for 6 months with the stim, getting moderate relief and able to reduce pain meds maybe 40%. I usually turned it off at night, because if I could lie flat on my back the vaginal & labial pain was minimal. In July 2012 suddenly started having "vibration" or a sense of mild stimulation in the mid-sacrum (exactly where the pain was during the trial). About 6 inches away from where the normal left lower gluteal stim was set for. I only noticed this vibration when the stim was turned off, all settings at 0. The rep said it wasn't malfunctioning, and that a lead was likely touching some scar tissue on the nerve. About 3 weeks after this vibration started it turned into that knife-like pain I had during the trial. We reprogrammed. Sacral pain progressed to the point where I couldn't lie down in any position, recline or sit. Not good, since for the prior 12-1/2 years lying down and reclining were my most comfortable positions for the PN pain. A few weeks later deep rectal pain started - never had pain like that before, and now I understand the sensation of a foreign body you all describe. It varies from a baseball bat (sometimes burning) to electric shock, and goes all the way up the rectum and then some. Updated films showed the leads had not moved or broken, so we kept reprogramming and hoping that with time things would settle down. After 5-1/2 months of this new sacral/rectal pain and decreasing benefit from the stim for my usual pain, I gave up and we removed the stim in Dec 2012. The doctor said there was nowhere to move the leads to, and because of the way mine was set up we couldn't remove just 1 lead and still get the PN coverage. We'd always had difficulty programming so that the stim didn't contract my leg and foot, and that it stayed away from the clitoris.
So, now I'm 4 months after stim removal and at 9 months of sacral/rectal pain which is completely new in my 14 years of fighting PN. Starts hurting immediately with sitting (even before the usual PN pain kicks in), and even with drugs sleep is horrible. Also still having vibration of the sacral nerve every few days. Plus, 3-4 months of what seems to be Functional Bowel Disorder (episodes of urgency/frequency & abdominal cramping), also new, which I'm convinced is neurogenic and related to the sacral/rectal, i.e. PN.
Recent pelvis neurogram at UC San Francisco found " inflammation of the left PN from Alcocks's canal medial to the left obturator internus muscle. Normal lumbosacral plexus and sciatic nerves. No denervation injury or atrophy." Lumbar and pelvis MRI scans done after stim removal are normal and show no cause for the sacral/rectal pain. My doc says my left PN was just too inflamed to tolerate the stimulator, but I did tolerate it without any problem for 6+ months. Has anybody else experienced new pain with a neurostimulator, and after removal?
I'm faxing a packet with all these updates to Dr. Hibner to see if he has any ideas now that I've failed the stim and we have proof that the PN is inflamed. All suggestions appreciated. I look forward to getting to know the new members and re-connecting with old friends here.
Quilter
In Nov 2011 underwent sacral neurostim trial which significantly helped the vaginal wall and labial pain, 70% less meds. Like some others I've read here, I did have very sharp midline sacral pain during and for about 1 week after the trial. Also some bowel frequency which also resolved quickly. No rectal pain. Decided to proceed with implant after passing the psych eval. Knew the stim wasn't going to cure anything, but we knew the left PN was the issue and didn't see any other choices. In Dec 2012 got a Medtronic Prime Advanced non-rechargeable stim implanted at left and midline S3 I (I think). Lots of scar tissue in the left sacrum (presumably from Hibner's surgery - it wasn't there preop) prevented the lead from going as far as desired, but I'd done well enough with the trial. Interestingly, I had NO sacral pain or bowel issues following the implant itself. What I got during the trial was from all the lead exploration until he settled on location, and from lots of programming. At my 4th programming session during the trial we finally got the stimulation way below the sacrum, and the sharp pain went away several days later.
Plugged along for 6 months with the stim, getting moderate relief and able to reduce pain meds maybe 40%. I usually turned it off at night, because if I could lie flat on my back the vaginal & labial pain was minimal. In July 2012 suddenly started having "vibration" or a sense of mild stimulation in the mid-sacrum (exactly where the pain was during the trial). About 6 inches away from where the normal left lower gluteal stim was set for. I only noticed this vibration when the stim was turned off, all settings at 0. The rep said it wasn't malfunctioning, and that a lead was likely touching some scar tissue on the nerve. About 3 weeks after this vibration started it turned into that knife-like pain I had during the trial. We reprogrammed. Sacral pain progressed to the point where I couldn't lie down in any position, recline or sit. Not good, since for the prior 12-1/2 years lying down and reclining were my most comfortable positions for the PN pain. A few weeks later deep rectal pain started - never had pain like that before, and now I understand the sensation of a foreign body you all describe. It varies from a baseball bat (sometimes burning) to electric shock, and goes all the way up the rectum and then some. Updated films showed the leads had not moved or broken, so we kept reprogramming and hoping that with time things would settle down. After 5-1/2 months of this new sacral/rectal pain and decreasing benefit from the stim for my usual pain, I gave up and we removed the stim in Dec 2012. The doctor said there was nowhere to move the leads to, and because of the way mine was set up we couldn't remove just 1 lead and still get the PN coverage. We'd always had difficulty programming so that the stim didn't contract my leg and foot, and that it stayed away from the clitoris.
So, now I'm 4 months after stim removal and at 9 months of sacral/rectal pain which is completely new in my 14 years of fighting PN. Starts hurting immediately with sitting (even before the usual PN pain kicks in), and even with drugs sleep is horrible. Also still having vibration of the sacral nerve every few days. Plus, 3-4 months of what seems to be Functional Bowel Disorder (episodes of urgency/frequency & abdominal cramping), also new, which I'm convinced is neurogenic and related to the sacral/rectal, i.e. PN.
Recent pelvis neurogram at UC San Francisco found " inflammation of the left PN from Alcocks's canal medial to the left obturator internus muscle. Normal lumbosacral plexus and sciatic nerves. No denervation injury or atrophy." Lumbar and pelvis MRI scans done after stim removal are normal and show no cause for the sacral/rectal pain. My doc says my left PN was just too inflamed to tolerate the stimulator, but I did tolerate it without any problem for 6+ months. Has anybody else experienced new pain with a neurostimulator, and after removal?
I'm faxing a packet with all these updates to Dr. Hibner to see if he has any ideas now that I've failed the stim and we have proof that the PN is inflamed. All suggestions appreciated. I look forward to getting to know the new members and re-connecting with old friends here.
Quilter