Health Organization for Pudendal Education

Great thread! I too have had the same experience as ezer. In fact, Dr Dellon mentioned to me after my surgery, thathe had just operated on a man 10 days before me that had the same issue as me. Ezer ended up emailing me and I found out it was him. I am not better sadly, but I have accepted it and have come to the realization that no doctor really has a "cure" for my problem. Therefore, I plan to pursue what ever course of treatment I can to find relief from my pain.

I spent 3 months doing PT once a week at the Women's Urology Center at Beaumont Hospital. It was mostly skin rolling and pinching and quite painful but ultimately did not bring me much relief. I found out that my chiropractor got a new shockwave machine and made an appt to see her yesterday. This machine she has is very different than the one she used before. It's more like an ultrasound wand. Anyway, I'm hopeful but in a bit of pain flare from it.

I use a Valium compound cream internally and that seems to help. My PT also got me an inferential stimulator that helped quite a bit a first but now not so much.

Pelvis, what was your experience with the shockwave therapy? I really would like to warn you to think very seriously about the dorsal nerve surgery with Dellon. I think I jumped into it to hastily and wasted A LOT of money in the process.

The ketamine infusions sound like heaven to me! Now I've just got to talk my pain dr into learning more about it.

Griff522 wrote:Pelvis, what was your experience with the shockwave therapy?

Didn't work for me, but I do still think they're on to something w. their protocol (which I think Lernica & definitely surfsup would agree with, based on their more positive experiences there). Still not totally sure why it did nothing for me...think it may have to do w. the location of my entrapment though, which I suspect is tucked right under the ridge of the l. pubic ramus, making it very hard for the head of the ESWT gun to access (even the smallest/finest head, as there are different sizes).

Griff522 wrote:I really would like to warn you to think very seriously about the dorsal nerve surgery with Dellon. I think I jumped into it to hastily and wasted A LOT of money in the process.

Thanks for the warning. Is it strictly b/c of the money involved though, or did you actually get worse post-op? (the former not so much an issue for me, other than flights & hotel, as I'm being fully covered by the Ont. govt.)

Thanks for the warning. Is it strictly b/c of the money involved though, or did you actually get worse post-op? (the former not so much an issue for me, other than flights & hotel, as I'm being fully covered by the Ont. govt.)

No it really isn't just the money. Our insurance paid 70% so we were only responsible for about $5,000. Would I love to have that money back? Heck ya because I feel like I didn't get what I paid for . . . which was a cure for my pain. But I went into it thinking it wasn't a big deal I.e. "not as invasive". Well it may not be as invasive as the TG approach but it's some pretty major surgery. He made a 2 inch incision but he had 3 retractors pulling me WIDE open. I had a tough time recovering from the surgery.

He said he found my muscle "rolled" and I'm not really sure even after reading the operative report what he did to that muscle. But he did something because that side is different than my left. The area is a bit numb and I have less sensation in the clitoris than I did before (no orgasms). I feel like "why did I go through all of that to still be in pain."

pelvis stressly,
I completely agree with griff522. If I recall, your Potter MRI does not match Dr.Dellon's findings. I know that you have doubts about the MRI, but it is just too important a decision to simply dismiss it IMO especially when you take in consideration this thread. I think the similarity in what is being reported is eerily disturbing and is statistically significant I am afraid. Even if the dorsal nerve is indeed the culprit, I am not 100% convinced this is the right approach.
I am not trying to sound too alarmist but the increased allodynia I am experiencing (which Ali has reported independently also) is bothersome.

So, do you guys think I have a better chance? I had surgery w/ Aszmann 6 wks ago. My area of pain matched exactly Potter's MRI. I have a causative factor (childbirth/episiotomy tear). The incisions were not in the same area as Lotta Nerve's Dellon surgery.

Griff, do you have pics from your surgery? What about you, Ezer?

I'm currently in a "flare" I guess. Or maybe it's nerve regeneration, or what, but it feels eerily similar to before surgery in some ways. I just am not giving up hope yet. My whole nerve is decompressed (remember, Hibner TG did proximal part that I didn't need, ultimately).

Thoughts?

My dorsal was not problem. ARea was distal alcock's and perineal branches.

I dont have any pictures. Not sure how that would help.

As far as whether your surgery will be a success, no one can predict that. We all are different and it sounds like your procedure was different than ours.

Something has t o be done. Was just talking w/ Ali and we just don't understand why there aren't more success stories.

A's mommy,
Yes, I have pictures and they look similar to Ali's pictures that are posted on the dorsal thread. I am also in the ebook chapter 12.

Griff522 wrote:but he had 3 retractors pulling me WIDE open. I had a tough time recovering from the surgery.

Do you know if those retractors were standard procedure though, or was that necessary specifically b/c of the "rolled" muscle?

Griff522 wrote: I have less sensation in the clitoris than I did before (no orgasms)

Whereas you had sufficient pre-op sensation to consistently achieve orgasm? (sorry if that's tmi!)

ezer wrote: If I recall, your Potter MRI does not match Dr.Dellon's findings.

The Potter thing is honestly a non-issue for me, even regardless of Dellon's assessment. I know it goes against the majority of opinion on this board, but I've been really skeptical of Potter's findings for a while now (which I hate to say, b/c firstly, I'd obviously love for there to be this kind of foolproof diagnostic tool available for all of us. And secondly, b/c I was the one who initially spread the word about Potter around here in the first place...little disturbing to me that so many people now seem to be taking her word as gospel!).

Just about every specialist I've talked to along the way (from surgeons, to PTs, to radiologists) all say that clinical findings always trump any MRI. And in my case at least, the MRI just doesn't match up w. the symptoms or the site of injury. The bike seat was applying pressure right at the level of the dorsal branch & that's exactly where all my symptoms occur (& the nature of those symptoms also point towards dorsal branch involvement...urine dribbling, tingling at the base of the penis, ED, etc.), even if Potter didn't see any problems there (& did see supposed problems in areas where I have no discernible symptoms instead).

I don't doubt that Potter's seeing what she's seeing, but I'm just not convinced that some or most of it isn't actually just artifact. As Glenn (the RMT who administers the ESWT in Cornwall) put it, 'I can find some degree of scar tissue in just about any muscle in any adult. Does that mean I automatically treat it? Absolutely not...it's got to correspond to actual symptoms! Just b/c scar tissue is present, doesn't mean it's necessarily the source of a problem.'

And I think prob. the same logic applies to the pelvic floor varices Potter's seeing in a lot of people (myself included). Firstly, I don't think there's much compelling evidence yet that varices can even cause nerve entrapment. Secondly, people who have had their varices embolized based on Potter's recommendation (such as A's Mommy) didn't get any relief. And thirdly, none of the (also very good) radiologists I showed Potter's scan to (at least four by now) could even make out anything remotely treatable as far as varices, based on her images (they all said the issue was minimal at best...which contradicted what she put in her report). I mean, I could live w. one radiologist disagreeing w. her, but it's a little harder to discount that many highly respected people all independently telling me the same thing (that she's making something out of nothing, as far as the supposed varices).

So I'm not really sure what to say about Potter at this point. I was one of the first to see her for PNE-related issues, so it is entirely possible that she's gotten 'better' since then. But yeah, I'm really not sold based on my scan alone.

ezer wrote:Even if the dorsal nerve is indeed the culprit, I am not 100% convinced this is the right approach.
I am not trying to sound too alarmist but the increased allodynia I am experiencing (which Ali has reported independently also) is bothersome.

This is more what worries me. I appreciate all the input & am definitely keeping it in mind as I struggle w. this decision. And again, really sorry to hear you guys & gals are experiencing this.

Griff522 wrote:As far as whether your surgery will be a success, no one can predict that. We all are different

This is my main 'pro' as far as proceeding w. the surgery (vs. the obvious 'cons').

Thanks again for all the advice/input people,
PS.

Pelvis Stressly wrote: Do you know if those retractors were standard procedure though, or was that necessary specifically b/c of the "rolled" muscle?

No I don't know if they are standard procedure because he didn't discuss his procedure with me. I don't think he even got my diagnosis right because in his letter he says I had clitoral pain which I never did and never said I did. I didn't have a whole lot of sensation there but it wasn't "numb" or "painful". I just think I put a little too much trust in him and now regret that.

Pelvis Stressly wrote:

Griff522 wrote: I have less sensation in the clitoris than I did before (no orgasms)

Whereas you had sufficient pre-op sensation to consistently achieve orgasm? (sorry if that's tmi!)

Yes this is a difficult and personal subject for me to address but I will do my best. I had never achieved orgasm during intercourse or foreplay. I could bring myself to orgasm in my jacuzzi bathtub before the surgery. Now I can not.