Health Organization for Pudendal Education

Man, pretty discouraging thread here folks! Really sorry to hear all the stories of post-op slides back to pre-op levels (or even worse...symptoms getting worse &/or new symptoms developing).

I actually just booked my surgical date w. Dr. Dellon today (supposed to be heading down for unilateral decompression of the dorsal branch on the l. side on Dec. 19th). I went down to see him for a consultation a few weeks ago, and he thought, based on where my pain is + the nature of my injury (bike seat), that for sure my left dorsal branch was the culprit (as soon as he start poking around my l. pubic ramus, I started wincing, as per usual...as opposed to anywhere else, like Alcock's, at the level of the ligaments, etc.).

While I was down there, I also had appointments w. the heads of both Plastic & Neurosurgery at John Hopkins to get second opinions + get their take on Dellon (my dad's a pretty senior scientist here in Canada, so pulled some strings to help make that happen, to say the least!). Anyway, they both agreed w. Dellon's assessment & said he's undoubtedly the best guy in the world for the job (they'd both performed surgeries w. him before).

However, all that said, obviously hard to not start second guessing that decision based on this thread! I could live w. things not improving post-op, but my big fear is things potentially getting a lot worse (I do experience a fair amount of pain/discomfort currently, but by far my main issue is the ED. I'm worried, based on some of the posts in here, that not only will the procedure not help the dysfunction, but it might actually lead to a lot more pain).

In particular, Ezer, you mentioned, "While I had strictly unilateral symptoms since the onset, I do experience post surgery some discomfort on the other side now." How bad is that new pain on the other side?

On another note, assuming Dellon's assessment is correct (which I believe it is), it would mean Potter was way off the mark in my case. In her report she stated, "More inferiorly, there is no mass compression of the dorsal nerve of the penis." And, "without dense scarring of the more distal branches of the dorsal nerve to the penis." (she observed the apparently not uncommon pelvic floor varices in my case, as well as, "pelvic floor scarring, noted deep to the inferior margin of the obturator internus muscles bilaterally").

Obviously when/if I do have the surgery, I'll be in a better position to determine how relevant (or not) her findings were in my case.

Again, really sorry so many people (& friends) here are still in so much pain even after going through surgery (or surgeries in some cases!).
Stay strong everybody,
PS.

You are probably in a unique position PS, being able to pick the brains of such knowledgeable people and you have done such a lot of research yourself too; I don't think there is much more you could do.
I think it is good that we are able to get a more rounded picture of the problems through forums like this, and I can understand your worries and wish you the very best. This is probably costing you a fortune and I hope that you do get excellent value for money.
xx Everything crossed for you xx
take care
Helen

helenlegs 11 wrote:This is probably costing you a fortune and I hope that you do get excellent value for money.

I had to pay out of pocket for the appointments w. the guys at JHopkins (well, my dad helped me out there, given that I'm a poor musician & have already spent over $20K of my own very limited loot on this condition over the last few years!), but luckily OHIP (Ontario Health Insurance Plan) covered the consultation w. Dellon. And I just found out a few days ago that they've also agreed to cover the full cost of the surgery ($21,500 USD!)...hence me booking my surgical date w. Dellon today.

Basically, OHIP is obliged to cover any treatment that you can't get here in Ontario, assuming you can convince them that it's necessary. Dellon wrote a very thorough & convincing report following my visit, and his office was great in getting it to OHIP quickly & then negotiating w. them on my behalf.

Thanks a lot for the warm words Helen, appreciate it

AliPasha1 wrote:More research needs to be done regarding the Peripherial nerves in the Pelvis,because the Pudendlal nerve isn't the only source of all problems in the Pelvis.

I agree, Ali. I had previously stated in another post that the PN isn't the only nerve you can damage. Nor is the PN completely accessable by ANY one approach. I also agree with you regarding the lack of follow-up. I think the word failure is grossly over used. Especially by the surgeons performing these surgeries. It appears they're using this label if the patient continues to have considerable pain - without considering the WHY. It's really no wonder why most of us think PN(E) is the root of all evil. Nothing else is offered to us. You're right - the pelvis is very complex. It almost doesn't even seem logical to expect that by addressing one limited area, that your entire pelvic problems would be solved. I do acknowledge there are some who have/had specific, localized trauma, but not the majority of us.

Violet M wrote:Follow-up is great but it takes time and $$$$$$$ -- something none of us have enough of. That's one reason it's so important for patients to come back and report their experiences here and I have great respect for all of you who have done that, even though the news may not be good.

With all due respect, I'm not quite sure I understand how coming back to the forum and complaining to eachother is helpful. I think it would be more important to report our situations to the doctors to get their feedback and medical help. Yes, it's true that follow up takes time and $$$$$$ - something none of us have enough of. However, that coming from a surgeon .... MY surgeon for instance, is lame. It's half-ass care. Not enough time or money isn't a good enough excuse to not return phone calls or keep track of the surgeries you performed. To find out what else could be going on, instead of just deeming the surgery a failure. No room for a learning experience there!

Sharon, my heart goes out to you. I'm deeply saddened Dr. Dellon cut you loose because of a failed nerve block. Could he have been wrong about his initial diagnosis?
It doesn't appear Dr. Dellon is aware that neurowrap completely dissolves within 2 weeks. It also doesn't appear that "operating where the pain is" was very helpful either. None of my blocks OR infusions relieved my pain. Has your obturator been investigated?

My best wishes to you, PS!

pelvis_stressly,
I had the same reaction you had during the physical exam. I also reacted to pressure on the dorsal nerve which seemed to indicate a clear cut case. It was also confirmed by the pressure sensory test.
The pain on the previously asymptomatic side is not terrible but slightly more concerning is the fact that I am slowly and progressively getting worse still. I suffer from increased allodynia (reported by Ali above also) and my brief periods experiencing low pain especially after rest are gone. The pain is constant.

Thanks for the wishes Karyn.

And thanks for the info ezer...sorry you're going through all of this. Do you think there's a possibility it might just be evidence of the nerve regenerating (ie. a step back before 2 steps forward kind of thing)? Have you been in touch w. Dellon about it all? What does he make of everything if so?

And was some degree of allodynia a symptom you experienced before the surgery, or did that only develop post-op?

So sounds like overall you prob. wouldn't have gone through w. the procedure if you knew then what you know now?

pelvis_stressly,
Yes, I have been in touch and Dr.Dellon is amazingly responsive and available to his patients. At this point, it cannot be the nerve regenerating. 6 months should be the maximum and past that, the chances of getting better are slim.
I did experience some allodynia before surgery. It completely disappeared for a good 2 months after surgery but then it came back worse.
Yes, clearly, it was not a success but I am not blaming anyone. I knew perfectly the risk.

Has Dellon offered any explanation as to why he thinks it wasn't a success though ezer? (sounds like you would have been an ideal candidate, based on symptoms!)

Karyn wrote:Sharon, my heart goes out to you. I'm deeply saddened Dr. Dellon cut you loose because of a failed nerve block. Could he have been wrong about his initial diagnosis?

Yeah, I was wondering this as well Sharon. He did the PFCN block above the ischial tuberosity? I'm kind of confused about that. From the research I have read it is either done 4cm below the ischial tuberosity or at the ischial spine (but there it can also block the PN). And he did the block unguided? That seems so odd to me and it seems like there would be room for error. Is your pain mostly at the ischial tuberosities?

Karyn wrote:Sharon, my heart goes out to you. I'm deeply saddened Dr. Dellon cut you loose because of a failed nerve block. Could he have been wrong about his initial diagnosis?

Faith wrote:Yeah, I was wondering this as well Sharon. He did the PFCN block above the ischial tuberosity? I'm kind of confused about that. From the research I have read it is either done 4cm below the ischial tuberosity or at the ischial spine (but there it can also block the PN). And he did the block unguided? That seems so odd to me and it seems like there would be room for error. Is your pain mostly at the ischial tuberosities?

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Hi Faith and Karyn,
Thanks for your attention and caring ... I do not feel very accurate about WHERE he did the blocks because I was laying on my stomach and had to extrapolate from what I was feeling as he did it. He pressed on my butt asking where my pain was and all I really know is that the ischial tuberosity (sit bone) was the landmark around which he was pressing. When I said "above" I meant above as far as the skin/flesh above it, not above as in directional - I couldn't tell if he was to the side or under or what to tell the truth. And yes, the injections were unguided.

And no -- that area is NOT my main source of pain. My main pain is, as always:
--- on the left side of vulva and vaginal wall (now I am just saying the whole wall, because I identified specific locations before and Dr. Dellon removed nerve branches in those locations - and the pain returned just weeks after surgery.) I joke that I could return to Dellon every month for “nerve electrolysis”

The original plan was to:
1) do the pubic ramus approach first where he would decompress the pudendal nerve in the anterior/distal Alcock's canal and deal with any other problems he might find;
2) do the PFCN surgery to take care of my sitting pain.

HOWEVER, instead of going to 2) as planned -- my pain returned and he decided on a "re-do" surgery... he thought the end of the nerve branch he had excised had possibly come loose. I emailed him illustrations showing where I was feeling the most pain, especially at the left side of my urethra. During the "re-do" surgery (which he did not charge me for) he removed several perineal branches, the one I asked for going to the left side of my urethra and another two that were in that same area. He said he even tugged on the main nerve and the left side of my urethra moved in response, so he knew he had the right nerve.

But... by 4-6 weeks after the second surgery, guess what happened?
- The pain returned again!!
(not to the exact "spots" where it was before, because those nerve endings were GONE, but to the same area) PLUS my bladder pain was flaring badly. I wonder if the nerve surgeries triggered more inflammation of my IC.

The PFCN surgery was still in the plans, however, and I was hopeful that the inferior cluneal nerves that intersect the PFCN nerve and run under the buttock toward the front of the body could have been contributing to my pain. I have an illustration that shows it really well.

Anyway, the rest of the story is earlier in this thread. It does seem exhausting, doesn’t it? At this point I am ready to get some input from Dr. Prager, who is familiar with pelvic pain and with interstitial cystitis, as well as all kinds of pain syndromes. I can always write to Dr. Dellon anytime if evidence points to the possibility that further nerve surgery will help.

I appreciate your thoughtful questions. It’s amazing to me how we take the time to think about each others surgeries and medical care and make suggestions or ask questions to help each other process and move forward. I am very grateful.