Surgery -- Only for the truly desperate? (Aszmann/Lakhiani)

[FinalCountdown]

Dr Hibner detaches both the SS and ST ligaments, but then reattaches the ST ligament (after working on the nerve) for added stability. I notice nothing regarding my SS ligament being detached.

This is explained nicely on his website.

[winged_cent]

Hi all:

I wanted to revisit this thread to once again ask the forum for advice.

I've scheduled with Lakhiani for a couple of months from now, but again, I'm beginning to have cold feet. Lakhiani says, in my case, he would do a simple decompression of Alcock's Canal and leave the ligaments alone.

My MRI is clear except for a finding that I have "prominent varices" in Alcock's Canal, left greater than right, and the left side is the only side I have symptoms on. So it's plausible to me that my symptoms are caused by compression of the nerve by varices in Alcock's Canal -- since varices are much less hard than scar tissue or ligament, that would also explain why my symptoms are comparatively milder than those suffered by people whose nerves are entrapped between the ligaments or in scar tissue after other surgeries.

I have tried non-surgical approaches to get rid of the varices, including having a stent put in the left common iliac vein following a diagnosis of May-Thurner Syndrome, and actually had a doctor at Johns Hopkins supposedly inject sclerosant into the varix under MRI guidance. None of this made a difference and an MRN following both the stent and the supposed sclerosing still shows the varices as being there.

The factors I weigh in favor of surgery are:

-- Symptoms are now extremely long lasting (10+ years) and clearly will not go away by themselves, and I've tried pretty much everything conservative.

-- Completely unilateral (left side only), suggesting that there is some specific entrapment rather than some kind of general pelvic pain syndrome. Right side is 100% fine.

-- Something specific is coming up on the MRN (the varices) that has a plausible connection to the symptoms.

-- PN nerve block is positive; when everything is numb, no pain.

The factors I weigh against surgery are:

-- While it emotionally wears me down to be in constant pelvic pain all the time for years, I recognize that in the grand scheme of things mine is mild-to-moderate. I *can* sit for hours, albeit uncomfortably, I *can* do most physical activity as long as I avoid certain lower body exercises, I *can* travel and work. I just have to deal with pain and uncomfortable paresthesia while I am doing all of this.

-- Not only do I not have a Tinel Sign, but no amount of pushing on either the Alcock's Canal, the ischial spine, or anywhere else on the pelvic floor reproduces the symptoms (or causes pain) at all. You can press with extreme force, you can use a Theragun massager directly near where I understand the Alcock's Canal to be, and there is no problem. Instead, the symptoms are entirely postural -- provoked by sitting, long term static standing, etc. This is sort of a red flag for me, though Dr. Lakhiani said it was not dispositive.

-- I am willing to accept that in the short-term following surgery, the recovery can be rough and painful. However, any trauma to the body leads to scar formation, and I am fearful that I could find myself in a situation where I replace a mild compression from pelvic varices which are relatively "soft" with a severe compression if the nerve is surrounded by scar tissue or adheres to the obturator internus or something like that. I have no reason to believe that there is any scar tissue there now, only a likely "tight squeeze" in the Alcock's Canal with the varices inside.

I think I had convinced myself that the risk of scar entrapment should not be too high if it were a "simple" decompression of the Alcock's Canal without touching the ligaments, but now I am not so sure.

Has anyone had surgery in situations resembling mine, or would like to offer any advice?

[Violet M]

I guess I have a couple of questions to consider --- did Lakhiani say if there would be a lot of cutting or would it be more like dilating the canal to open it up better, or would it be some type of neurolysis? If there is cutting involved, are you someone who typically forms a lot of scar tissue? Bautrant told me when he decompressed the Alcock's canal it was like pushing a finger through to free it up. I'm not sure how that would fix the varicose vein problem though. How would Lakhiani address that?

Violet

[winged_cent]

Hi Violet:

Thanks for your response. The idea is that it would be a neurolysis, which in my understanding, involves opening up and cutting the fascia roof of Alcocks Canal, such that the canal no longer really exists as such, and the nerve is instead free. In so doing, if varices are found to be impinging it, they could be separated from the nerve and ligated (essentially cut out).

What is not cut is the SS or ST ligament.

As to the question of scar formation, I don’t have a basis to know. I have no reason to believe that I am someone who forms a lot of scar tissue, but I just don’t know.

[Violet M]

Well, that's a tough decision. Neurolysis is generally thought of as less invasive than if they cut the ligaments and it sounds like the procedure Lakhiani described could potentially ease the pressure and pain. What helped me to decide on surgery was that my pain was already so bad I didn't think surgery could make it much worse, but it could give the possibility of getting better. You could ask Lakhiani if he does anything to prevent scar tissue formation.

Violet

[aussie_surfer]

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[winged_cent]

I've decided to abstain from surgery for now.

I am sure that the pudendal nerve is involved in my symptoms, but not sure at all that it results from a mechanical entrapment. The lack of symptom reproduction from palpating the Alcock's Canal or the area between the ligaments is a red flag that it might not be.

I think that even if there is a 10% that things *could* get worse after surgery--for instance, what is now a "soft" compression against a vein becomes a "hard" compression after post-op scar tissue, it is too risky -- it would be like a point of no return that is self-inflicted. The fact that the symptoms have gone on for probably 12 years now but is not *that* serious indicates to me that any compression that exists is likely mild, and that I will have a future opportunity to act if the symptoms become worse or intolerable. Currently, except for Valium suppositories at night as needed, I am on no pain or nerve medication, which I know is not the case for most people who opt for surgery.

I wish the downside risk didn't exist, and it were only a question of having to deal with the difficult post-op period. This was sort of the account I received from Dr. Lakhiani, who tended to present the worst-case scenario as "you will not get better," rather than, '"you could get worse." I think there are enough stories out there that demonstrate that, while relatively uncommon, you can get worse, and it's hard to predict who will generate scar tissue and who won't.

I'm going to try to get a new HSS MRI to see what the situation is now (haven't had one in a while) and maybe go back to an interventional radiologist to see if there's anything else that can be done with the veins, and really follow up with some good PTs in New York to see if they have some other ideas.

This is a frustrating outcome, because surgery does hold out the prospect of a cure if everything falls into line, and I know that I will have to continue to deal with symptoms as this will not resolve spontaneously after all these years. But I think because of the lack of diagnostic clarity, the realistic likelihood of a cure or improvement is not high enough to outweigh the risk of it getting worse -- at least at this time.

[April]

Hi winged cent,

That sounds like it was a difficult decision. I can understand it being really difficult, but it sounds like you've done a good job of weighing all the factors.

You noted the "lack of symptom reproduction from palpating the Alcock's Canal or the area between the ligaments" led you to conclude that it's not pne. That may be true, but I also think there is variability in how this problem manifests and that some the diagnostic tools that doctors use are not definitive. So, if you continue to suffer from the problem, you could reach out to another surgeon just in case someone else has new insights.

Take care,
April

[Violet M]

Yes, that does sound like a difficult decision you've had to make, Winged-cent, but it makes a lot of sense what you are saying. I have often said, don't try surgery unless you are in such bad shape already that you are willing to risk getting worse. That was kind of the criteria I used. Sounds like you have a good strategy for moving forward and I hope you will be successful with what you try in the future.

Violet

[winged_cent]

Yes, Violet, that’s precisely it. My condition is such that—while quite irritating—not yet “in such bad shape that I am willing to get worse.”

For instance, this weekend, I was able to move around a lot, go to hot yoga (Bikram), the gym, and even catch a concert. The symptoms were there, but not overwhelming. But then this week, despite using a standing desk and sitting infrequently at work, I am flared (because the static standing required for my job, while not as bad as sitting, is still worse than moving around).

This just doesn’t rise to the level yet where I am willing to risk some surgery that leads to scarring or a super high level of pain that I am unable to deal with. But if it progresses further— it may still prove something to consider.