Surgery Option w/ Dr. Dellon

[rc3432]

I've had pain on the left underside of my scrotum and perineum for about three years. No major issues in my penis or anus, or with incontinence or sexual dysfunction. I had an evaluation with Dr. Dellon and he believes I have an injury to the left perineal branch of the pudendal nerve, with some potential minor genitofemoral involvement too.

I had an MRI and both nerves blocked with Dr. Fritz at Johns Hopkins. In the final report he noted that during the injection of the left pudendal nerve, there was resistance at the Alcock's Canal suggestive of scarring. I achieved almost complete relief with the block on that day, and also had about two weeks of improvement afterwards, but now back to my normal average pain level (4 or 5 out of 10).

In my follow-up with Dr. Dellon, he described a surgical approach in which he would go in from the front while I'm on my back with my left leg raised. He said he could remove the perineal branch since it does not provide motor function (only sensation) and that he could clear up any scarring. Does anybody know the technical name of this approach so that I can further research? Or, has anybody had experience with this approach who had only perineal pain and no other symptoms?

Thanks in advance...

RC

[Violet M]

I haven't heard of a name for this approach. Dr. Dellon is a plastic surgeon which would make him well trained in the prevention of scar tissue. Did you have a pelvic MRI that revealed scar tissue in that area? Or possibly a thickening of the ligaments since it sounds like maybe you are a bit of an athlete....
Not that MRI's are 100% accurate in diagnosing entrapments but it would be interesting to see if it confirmed what Dr. Dellon is saying.

Violet

[rc3432]

Thank you for your quick reply.

The MRI itself showed nothing of interest. The nerves showed normal intensity and no inflammation. No issues with muscles, bones, or tendons. There was an incidental finding of mild degenerative tearing of left hamstring muscle, but Dr. Fritz said that is a common finding.

Although nothing showed up on the MRI, Dr. Fritz wrote this in the final report: "During the perineural injection of the left pudendal nerve and Alcock's canal, there was a suggestion of perineural left pudendal scarring at the entrance level of Alcock's canal, subjacent to the left sacrotuberous ligament."

Is this enough evidence to consider surgery? Dellon said he could go directly in to the perineal area and remove that branch since that is where my pain is. That doesn't like the typical "decompression" that I've seen discussed on here. If he were to try to eliminate potential scarring near the entrance to Alcock's Canal wouldn't the approach go via the buttocks?

RC

[Violet M]

Hi RC

I think they can access alcock's canal via the perineal approach but it sounds like Dr. Dellon would just remove that nerve branch rather than relieve any compression there. I don't know exactly how high the risk would be of having phantom pain even after that nerve branch was removed but my understanding is that there would be a risk of that. It is not the typical decompression that most PNE surgeons do. You might want to get a second opinion. Have you talked to any patients who have had that type of decompression?

Violet

[rc3432]

Thanks. I haven't been able to find too much literature about cutting the perineal branch with a perineal approach. There is only one paper that I could find that was co-written by Dr.
Dellon and Dr. Goldstein and a few others. It seemed like the results were pretty good. I haven't found anybody (at least not yet) on these forums who have had similar symptoms or surgery in that manner.

In terms of other opinions, I've spoken with both Dr. Marvel and Dr. Richard (at University of Maryland).

Dr. Marvel seems to be a proponent of neurostim. He said he previously did surgery using the TG approach but rarely does it anymore. He said he was not familiar with the perineal approach that Dr. Dellon spoke of so he couldn't provide any advice.

Dr. Richard said that since I got a positive response to a nerve block, his advice would be to start with the least invasive remaining options and work my way up, in this order: botox of OI (if PT confirms some spasm), pulsed radio frequency, cryoablation, neurostim, then surgery. He does both pulsed radio frequency and cryoablation of the PN, but does not do surgery or neurostim devices. His order seemed to make sense to me. Thoughts?

RC

[winged_cent]

Hi RC,

I'd follow Dr. Richard's advice, but only to an extent. I do think that Botox is worth a try -- it's true that some people on the board have flared from it, but it's not very clear to me why that is, and at least in my personal case, I did not flare (though didn't get symptom relief either). As for some other things that he mentions, like cryoablation, it would seem to me to be quite invasive itself. It is, after all, partially neurodestructive, is it not? In my case, where some of the symptoms are loss of/altered sensation in the dorsal nerve, that's not something that you can or would want to ablate.

[Violet M]

I would be a little nervous about cryoablation for the same reasons as winged-cent. My understanding from Dr. Prologo is that it is still in the developmental stages. I guess there are risks both with surgery or with cryoablation but it seems like with surgery you aren't purposefully destroying nerve fibers and you may have a chance at healing like I did. I would consider cryoablation a pain relief/pain control option but the goal would not be to free up the nerve to allow it to heal -- you would just be achieving some pain control. At least that is how I understand it.

Cryoablation would be less risky as far as surgical complications, complications from anesthesia, and infection. So there are pros and cons either way.

Violet

[rc3432]

My main concern on the surgery is that I don't know for sure that I have entrapment. I have a report from a good doc that I trust that there was suggestion of scarring at Alcock Canal during a nerve block, but no definitive findings on an MRI (or even a hint on an MRI) that there is something trapping the nerve. My sense from Dellon was that it would be in a sense exploratory, in that he would go in and clear up any scarring found and remove just the perineal branch. It felt a bit too "open-ended" for my liking. But I'll need to get more clarification from him.

On the cryoablation, Dr. Richard said the goal is to freeze the nerve and then hope it grows back without the painful sensations. He said he was more willing to try on someone like me who's pain is one-sided (left only), as he would only treat the left nerve. He said he is very cautious about doing it bilaterally.

It's all so very confusing. Thanks all for your input.

RC

[Violet M]

I can't remember if there are any publications with statistics on success rates for the type of surgery Dr. Dellon performs. If he is going to cut the perineal branch rather than just free it up, as I am reading he's done with some other people, then I think cryoablation might be a safer option than going through a major surgery and having the nerve completely severed. I don't know -- just thinking out loud here.

Violet

[rc3432]

Violet,

This study is the only one I could find that mentions resecting the perinael branch: https://www.ncbi.nlm.nih.gov/pubmed/28259114. I couldn't find anybody on here that has used that approach.

If I do pursue surgery, I'm trying to make sure I understand which approach would be most effective and safest for my symptoms.

On the one hand, I might have scarring near the entrance to Alcock's Canal, which would suggest more of a TG surgical approach through the buttocks (I think, if I have my anatomy correct).

On the other hand, all of the my symptoms are perineal and scrotal, and I have tenderness at the exit of Alcock's Canal, which would suggest an approach lower down the nerve path and closer to the symptoms. I think that is what Dellon is suggesting. I'll need to confirm with him at my next appointment.

RC