new sacral/rectal pain with stim & after removal

[quilter]

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

[janetm2]

Quilter,
Hello and welcome back but as we say sorry to hear you are here in need of help and in such pain as well vas having to remove the stimulater. Appreciate you takning the time to update us and hope someone has used a stmulater and may have some guidance for you. Maybe this will at least make you a candidate for redo to get you some relief. I have not used a stimulater but just wanted to say Hi and wish you well. I am wide awake even having taken over the counter sleeping pill from withdrawal from oxycodone now that the nerve pain is pretty much gone from PNE surgery and recent acupunture. Unfotunately I am getting serious toe pains probably due to withdrawal of the oxy but hoping it will go away and I adjust. My boss said I should take the week off when I did the withdrawal and that may be necessary with the toe pain. Hoping better days for you my nerve pain was rectal but not deep and it certainly was tough as you say. Take care
Janet

[helenlegs 11]

Sorry I don't have anything to add in reference to your question, just wanted to echo Janet's thanks and well wishes. You must be devastated as this was proving to be a decent 'fix' (although no real fix of course) for you. Hope you get some feed back.
Take care,
Helen

[Meliora]

Do you think the stimulator caused the inflammation to the nerve or do you think it was already there from PN? I could see where the body would not like having an implanted device and causing an inflammatory response. I could also see PN being inflammatory in nature. I am so sorry you are having even more pain. Maybe a new pain doc would have some ideas? Things will get better, setbacks are hard though.

[nyt]

I echo everyone sentiments. Just heart broken for you. What about a pain pump implant?

[Violet M]

Quilter, I'm heartbroken for you too. If you can get away from the pain while you are sleeping it's much easier to cope but once it starts to interfere with sleep even when on drugs, life becomes difficult to bear.

I do know someone who is having new pain as a result of a neurostimulator trial and they are searching for answers right now just as you are, and exploring the possibility of a pain pump. It would be a very tough decision as to whether to try a redo surgery after what you have been through. My prayers are with you as you decide what to do next.

Hugs,

Violet

[quilter]

A pain pump trial was next on the list after I healed from stim removal. Then we got the neurogram and MRI results, and Dr. Poree wants me to see Dr. Hibner or someone of that caliber first. We'd both rather treat the cause of the problem rather than just the symptoms. I've faxed diagnostics and an update to Dr. Hibner - waiting to hear his thoughts now that I have more pain than before surgery. Also doing research here to see who/what else I can consider.

It took 7 -1/2 years to diagnose PNE. Now it feels like much of the treatment/pain/money/hope of the last 5-1/2 years has been somewhat wasted. Thanks for all your encouragement, need it more than ever to keep me moving forward.

[Violet M]

Quilter, I don't know if it's any comfort to you but one of my friends who just saw Dr. Hibner said he told her that he's having better success with redo's than some of the initial surgeries. I have no other details than that but maybe it's worth a try to go after the cause rather than trying the pain pump first. I don't know.

Sorry you are struggling so much right now. You have had a very rough road.

Hugs,

Violet

[hopeman]

Quilter

Did Dr Hibner cut your SSL and repaired.

Did you develop pelvic instability after cutting SSL.


Hopeman

[quilter]

I've seen many general and pelvic PTs over 15 years to work on this pain, and all have said I do not have SI joint instability, even after the 2nd surgery 8 months ago. One of the reasons I chose Dr. Hibner in 2007 was because he seemed to be the only doctor repairing the ligament in order to prevent SI dysfunction, and with good results in that regard.

Sometime in 2013 (I think) Dr. Hibner stopped using the cadavr graft to repair the ST ligament incision (had that with my 2007 surgery, and at the December surgery he noted that the prior graft had been absorbed). Now he changed that incision from a straight line cut to an elongated 'Z" shape. With the new incision he doesn't need the graft because the skin fits together tighter and is perfectly aligned (like puzzle pieces), plus there isn't a straight ridge of scar tissue that has to be worked on with painful scar massage postop. He'd been getting good feedback from patients and PTs about better results with the new technique (plus some patients objected to having the graft). We've needed only minimal scar massage this time. My PT sees a huge improvement in my incision healing compared to 2007. Very little incisional pain after December. I remember being unable to put ANY pressure on that butt cheek for 3? Months in 2007, and finding a good bed position was tough. Hated those many months of scar massage back then.