Health Organization for Pudendal Education

Hello folks,

I haven't posted here in a long time - I'm still here, but very little has changed. After many, many years, I still haven't gotten a definitive diagnosis, but I don't see how it's possible that pudendal neuralgia isn't at least one of my problems.

Like many of you, I have "tried everything," and I've counted 6 times in the past 10 years where I've had several hours (hours, not days) of relief. Most recently, it was a test two weeks ago for an Intrathecal Pain Pump (.2 mg of Dilaudid injected directly into my intrathecal space). Note: That's *Point 2* milligrams.

I had several hours of pain-free bliss for the first time in ages, and 8 days from now, I'm getting a "permanent" Intrathecal Pain Pump installed. I say "permanent" in quotes because you can get these removed with an outpatient surgery appointment. At this point, exactly "what" is wrong with me is secondary; I have to alleviate the pain before I can do anything more at all.

I'm hopeful that I can write back with good news, and want to let people know that, despite this being an older, long-accepted, apparently-reasonably safe technology, it's only recently beginning to get some publicity (probably because of Medtronic).

Knowing what I know about anatomy, the nervous system, etc. (which is considerable at this point), I don't see how this treatment cannot at least partially help pudendal neuralgia victims.

Please feel free to comment, but above all, please hang in there, and keep trying.

Is anyone following this?

I had my intrathecal pain pump installed today. I won't get it "pumping" for another week, but the installation went without a hitch. (My pain practice works both with Abbott and Medtronic - my device is Medtronic.) As of right now, it's pretty much like it isn't doing a thing, because it won't begin delivering medication (at least, any meaningful medication) until Friday, the first Friday of the New Year.

If anyone has any questions, please ask; I won't have any new information until Jan 4, 2020, but I'm glad to engage with anyone who wants information.

Everyone in the operating room seemed incredibly optimistic about me.

At the minimum, if you've been shafted by new opioid regulations, this should be a way around that. These pumps use 1/300th of a typical oral dose (in other words, if you were taking 300 mg/day of Dilaudid (hydromorphone), these pumps only require 1 mg/day to be pumped into your intrathecal space for the same pain relief, but without any of the ugly side effects. Obviously this is a simplification, but it's essentially correct.

Again, I should emphasize that I've not been diagnosed with anything, but I *know* that pudendal neuralgia is one of my problems.

That's great. I see, so dilaudid is a narcotic, but it's pumped directly on the nerve rather than taking it orally. Wonderful news that there were no problems getting the pump put in. Let us know how it goes once the medicine starts pumping.

April

April wrote:That's great. I see, so dilaudid is a narcotic, but it's pumped directly on the nerve rather than taking it orally. Wonderful news that there were no problems getting the pump put in. Let us know how it goes once the medicine starts pumping.

April

April, not "on the nerve," but directly inside the intrathecal space. This is the fluid-filled area that runs up from your spinal cord to your brain. Essentially, it's like adding cream to a cup of coffee: Consider your spinal fluid the coffee, and the dilaudid the cream - it all gets mixed together, and the entire reservoir of spinal fluid has the dilaudid mixed into it (all the way up to and including your brain). That's why it takes so little to work: It takes literally 1/300th of the amount of opioids to achieve the same results as oral ingestion, with little or none of the ugly side effects like constipation, excessive sweating, and respiratory depression (i.e., death) that have caused overzealous lawmakers to put the kibosh on opioid prescriptions.

Again, without having any specific knowledge of how this works for pudendal neuralgia, I don't see how this *couldn't* help - the pudendal nerves eventually connect with your spinal cord, and all of this "intrathecal stuff" takes place upstream, so the pain signals will be intercepted (well, not so much intercepted as "softened" by the dilaudid).

I'll ask my doctor when I see him this week if this could potentially help proven pudendial neuralgia victims.

Hi,

That actually is great news. Glad to hear that you are receiving some pain relief. Is this something permanent that the doctors have placed for you or is this something that is temporary?

Take care,
Wendy

Hi Wendy,

An Intrathecal Pain Pump is "temporary permanent" - it's durable medical equipment, with the pump/reservoir being implanted just under the skin of your abdomen (you can choose the side), and a catheter that runs inside your intrathecal space. People have them for years, from what I hear, but you can also get them removed with an outpatient procedure. The surgeon told me I had no limitations: I could play football, skydive, scuba dive, lift weights, etc. Ha ha - we'll see, but there's enough "slack" in the catheter where he said you couldn't dislodge it if you tried (the nurse, however, said, "No lifting anything for six weeks!" so take your pick).

What they do is make about a two-inch incision in your lower back, insert the catheter (with a *lot* of slack), put it in your intrathecal space (somewhere around L3, I think), then they take the other end of the catheter and darned near impale you with it, running it down to your anterior side. Then, they flip you over, and make about a four-inch incision, connect the pump/reservoir to the other end of the catheter, and fix it in place - there are no staples, and all stitches are internal. The process takes about an hour, and I woke up in only mild incisional pain, got dressed and walked out under my own power (you need to have a driver, but you can drive the next day). The surgeon even told me I could have a cocktail that evening if I wanted (this was a 4 PM procedure).

At this rate (which is way too low), my pump won't need to be refilled until May 14; I suspect it will be more like 45 days. You can go into your pain doctor, and it's just like they're giving you a shot (except they're putting the medicine directly into the reservoir). The batteries supposedly last for 4-5 years, after which you need another procedure to swap out the device.

Okay, so, my surgical wounds are healing nicely. My doctor gave me 28 10 mg Percocet tablets for the surgical pain when he inserted the system on Dec 26.

On Jan 2, he put it on the lowest setting: a steady dosing of .5 mg per day (that's 1/2 mg per day) with 4 available bolus doses daily of .05mg - you have to wait at least 2 hours between bolus doses. The medication used is hydromorphone (dilaudid). I'm going back to see my pain doctor this coming Friday, Jan 10, to *hopefully* increase the dose. The reason I say that is because what I started out with isn't doing anything (although I am mostly off my oral medications); still, this cannot be the "final" setting because I'm just not getting much pain relief. When I use the bolus doses, I don't feel a thing; I do them anyway just so my body gets used to .7mg/day, in hopes that my dosing will be greatly increased going forward. (However, I restate that a single "test" injection of .2mg worked like a miracle for a few hours.)

I'll fill you all in as to what's happening - I was hoping the initial dose would do more than it does, but they purposefully start you out at the lowest possible amount, just because they titrate *up* instead of down. I suspect they'll double the dose this Friday, and increase it by the same amount the following week, but I'm not sure yet.

More information in a few days ... I remain very hopeful. I want my life back, dammit, and I want you to have yours back also.

Thanks for the update, Final. It all sounds good. Did they up your dose at your last visit?

April

Damned system erased my answer when I hit a wrong key - more later.

Hi Final
What is going on?

Ray

Hello folks, I still don't have much good information, but I'll tell you what I have:

Fri, Jan 10: Had an appointment for my first titration (8 days after the initial setting of .5 base and .05 bolus x 4). I drove 40-minutes each way, and waited in the office for an hour, only to be told that they didn't have the iPad necessary to do the adjustment. I was sent home sad-eyed with a promise that I'd be called the following Monday, and was given a prescription for 21 10-mg Percocet to tide me over.

Mon, Jan 13: I got a call around noon, and went straight in. Again, I waited for what seemed like forever - finally my pain doctor came in and told me that she would titrate my dose up 25%. I looked at her like she shot my dog, and told her that I was expecting a lot more than that - we went back-and-forth, she left, came back, and told me that she'd agree to 50% (despite her "confidence," she is VERY new at this, a bit unstable, and not all that smart). Well, she upped the dose to .75 base and .075 bolus x 4, for a daily total of 1.05 mg hydromorphone. I left the office despondent, but was a bit surprised to see that on the way home, I actually felt a bit light-headed (which still doesn't make any mathematical sense). Two-hours later, I gave myself the first bolus dose (I told my GF to have the Narcan ready just in case). Again, I felt somewhat light-headed as it was going in, which means that, yes, things at least seemed to be working properly. However, these were the only two times I felt light-headed; I only got mild pain relief that week, with no other symptoms. But I did notice after a couple of days that my pain level seemed to have dipped a bit.

Fri, Jan 17: I had an extensive MRI of the pelvis, pelvic bone, and lumbar plexus area. The pudendal nerve "seems" to be okay, but the one home-run thing is that they found my right piriformis muscle is HALF the size of my left piriformis muscle (the same thing they found 8-months ago). There is a reason for this, medically - I had a hip replacement that got infected, and when they washed out my hip (in 2009), I experienced the only 10-out-of-10 pain I've ever felt upon awakening - something happened during that procedure - during the actual hip replacement, the surgeon could not dislocate my hip (he tried six times and couldn't), and *this* procedure is the first time it was ever dislocated, pulled towards the anterior - which means something bad probably happened posterior to that (something stretched? ripped?). Anyway, the exam was 90-minutes away, I had spent the night, and it was a very, very taxing couple of days. Once again, I was not getting adequate pain relief.

I called today, and will be having another appointment on Fri, Jan 24, hopefully for another 50% titration. My doctor said (erroneously, I believe), that nobody goes over 4mg/day of this (I've seen papers and protocols to the contrary).

I'll keep you posted - keep asking questions if you have any ... (if I had to guess right now, I'd guess that my right piriformis muscle is pressing on my sciatic nerve, but the pudendal nerve is very near here also).

Your takeaway from this is how LONG it takes to get things done in the American medical system, and I've been told that this has gone very quickly. Hmmph.