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

[winged_cent]

Hoping to hear some thoughts on this conundrum.

I’m 36 and I’ve had pudendal neuralgia for over a decade now, and it’s not going to go away by itself. There is no doubt in my mind that the pudendal nerve is involved – I’ve had positive pudendal nerve blocks, all of the symptoms are on one (the left) side, the symptoms consist of nerve tingling and burning in the perineal area going starting at the rectum and stretching up (sometimes) up to left side of the penis, etc. A test of the peak systolic velocity of the pudendal arteries found that it was markedly less on the left side than on the right.

I also have muscle pain on that left side. I’ve had loads of pelvic floor PT, as well as two rounds of Botox to the left obturator internus, but at the end, the PTs couldn’t find many trigger points or help me. When my symptoms are aggravated, I feel pain right where the obturator internus attaches to the ischium, and that area feels “ropey” to the touch. I also get muscular pain on that left side in various places at various times, all around the obturator area.

However, compared to the stories of many others here, I’m one of the “lucky ones”. My symptoms are comparatively mild. Average level of pain is probably a 3? Though I try to use a standing desk at work, I can sit (uncomfortably, with pain, and with nerve symptoms) for hours, especially with a cushion. I can go running (movement tends to feel good). I can exercise, as long as I avoid lower-body exercises that tend to exacerbate things.

But the doubts remain. I’ve done all the conceivable conservative treatments, ranging from PT to Botox to “Headache in the Pelvis” style meditation to trying to address collateral vein and hip issues, all to avail. And I have been in pain every day of my life for 10 years, and will continue to be in the future. When it’s aggravated, I feel some loss of sensation. Isn’t it going get worse as I age? Am I really going to be able to avoid sitting down when I am 50, 60, 70 years old? Should I try to address this while my body is young and likely to respond better to a surgery?

I’ve had MRIs and they don’t show anything too remarkable and I don't have a Tinel sign when my pelvic floor is palpated. But if it were *only* pelvic floor muscle dysfunction, I find it difficult to understand why it would be so intractable over such a long period of time, and why it would be solely and exclusively on one side. How can it be that I have no symptoms whatsoever on the right side, both muscularly and nerve-wise?

My explanation now is that, absent any kind of trauma or scar tissue, I likely have some sort of anatomic tendency towards this—perhaps a “tight squeeze” in the Alcock’s Canal, and this is causing both the nerve symptoms and for the muscles around the nerve to be abnormal.

So, even though I *could* continue to live with this pain, I am considering the possibility of surgery. I’ve consulted with pretty much every surgeon you can think of (Conway, Hibner, Dellon, Aszmann, Lakhiani) and it seems that the Conway/Hibner TG surgeries are more invasive than that of their counterparts and always involve cutting the ST ligament. I don't want that. Both Aszmann and Lakhiani say that, unless they see something pathological surgically, they would preserve both the SS and ST ligaments. Lakhiani in particular said that if it was currently compressed and he opened up Alcock’s Canal, the nerve would have more room to move. They both stated that the risk of a surgery that preserved the ligaments is fairly minimal.
So my questions, at this point, are:

(1) Do you think it’s crazy to go for surgery in a situation like mine, where I am in pain but still highly functional?

(2) Anyone had TG surgery with Lakhiani or Aszmann recently and care to share experiences about the recovery/results? (I have talked to some people who had good experiences with Aszmann, but this was some time ago).

(3) I want to more carefully evaluate what Lakhiani was saying, but I don’t have the best grasp on the anatomy of Alcock’s Canal. When surgeons are decompressing that area, are they only removing scar tissue or are they cutting a specific structure to allow the nerve more room, much like you do for a carpal tunnel surgery? If so, what is that structure that they cut? I always had in my mind that if you don't have any scar tissue, there's no point in decompression, but perhaps I was wrong. Certainly many people don't have "scar tissue" in their wrists but still benefit from a carpal tunnel release?

Thanks for any thoughts!

[Violet M]

So my questions, at this point, are:

(1) Do you think it’s crazy to go for surgery in a situation like mine, where I am in pain but still highly functional?

(3) I want to more carefully evaluate what Lakhiani was saying, but I don’t have the best grasp on the anatomy of Alcock’s Canal. When surgeons are decompressing that area, are they only removing scar tissue or are they cutting a specific structure to allow the nerve more room, much like you do for a carpal tunnel surgery? If so, what is that structure that they cut? I always had in my mind that if you don't have any scar tissue, there's no point in decompression, but perhaps I was wrong. Certainly many people don't have "scar tissue" in their wrists but still benefit from a carpal tunnel release?

1) That's a really tough question since your symptoms are mild. I would not think you are crazy if you went for surgery. Pain can tend to wear on you and be exhaustive. But only you can answer the question of whether you would rather live like you are or take the very slight risk of getting worse.

3) I was told by one physician that they sometimes cut away part of the OI muscle if it is enlarged. Also, the nerve can potentially be encased in the fascia of the OI muscle so they might need to release it from the fascia. I don't know what Lakhiani was referring to, but those are two potential possibilities. When Bautrant did my surgery, he also cut away part of the falciform process of the ST ligament where it attaches to the bone. So, it allowed more freedom of movement of the nerve in the Alcock's canal without causing pelvic instability.

Violet

[sightandsound]

Hoping to hear some thoughts on this conundrum.

I’m 36 and I’ve had pudendal neuralgia for over a decade now, and it’s not going to go away by itself. There is no doubt in my mind that the pudendal nerve is involved – I’ve had positive pudendal nerve blocks, all of the symptoms are on one (the left) side, the symptoms consist of nerve tingling and burning in the perineal area going starting at the rectum and stretching up (sometimes) up to left side of the penis, etc. A test of the peak systolic velocity of the pudendal arteries found that it was markedly less on the left side than on the right.

I also have muscle pain on that left side. I’ve had loads of pelvic floor PT, as well as two rounds of Botox to the left obturator internus, but at the end, the PTs couldn’t find many trigger points or help me. When my symptoms are aggravated, I feel pain right where the obturator internus attaches to the ischium, and that area feels “ropey” to the touch. I also get muscular pain on that left side in various places at various times, all around the obturator area.

However, compared to the stories of many others here, I’m one of the “lucky ones”. My symptoms are comparatively mild. Average level of pain is probably a 3? Though I try to use a standing desk at work, I can sit (uncomfortably, with pain, and with nerve symptoms) for hours, especially with a cushion. I can go running (movement tends to feel good). I can exercise, as long as I avoid lower-body exercises that tend to exacerbate things.

But the doubts remain. I’ve done all the conceivable conservative treatments, ranging from PT to Botox to “Headache in the Pelvis” style meditation to trying to address collateral vein and hip issues, all to avail. And I have been in pain every day of my life for 10 years, and will continue to be in the future. When it’s aggravated, I feel some loss of sensation. Isn’t it going get worse as I age? Am I really going to be able to avoid sitting down when I am 50, 60, 70 years old? Should I try to address this while my body is young and likely to respond better to a surgery?

I’ve had MRIs and they don’t show anything too remarkable and I don't have a Tinel sign when my pelvic floor is palpated. But if it were *only* pelvic floor muscle dysfunction, I find it difficult to understand why it would be so intractable over such a long period of time, and why it would be solely and exclusively on one side. How can it be that I have no symptoms whatsoever on the right side, both muscularly and nerve-wise?

My explanation now is that, absent any kind of trauma or scar tissue, I likely have some sort of anatomic tendency towards this—perhaps a “tight squeeze” in the Alcock’s Canal, and this is causing both the nerve symptoms and for the muscles around the nerve to be abnormal.

So, even though I *could* continue to live with this pain, I am considering the possibility of surgery. I’ve consulted with pretty much every surgeon you can think of (Conway, Hibner, Dellon, Aszmann, Lakhiani) and it seems that the Conway/Hibner TG surgeries are more invasive than that of their counterparts and always involve cutting the ST ligament. I don't want that. Both Aszmann and Lakhiani say that, unless they see something pathological surgically, they would preserve both the SS and ST ligaments. Lakhiani in particular said that if it was currently compressed and he opened up Alcock’s Canal, the nerve would have more room to move. They both stated that the risk of a surgery that preserved the ligaments is fairly minimal.
So my questions, at this point, are:

(1) Do you think it’s crazy to go for surgery in a situation like mine, where I am in pain but still highly functional?

(2) Anyone had TG surgery with Lakhiani or Aszmann recently and care to share experiences about the recovery/results? (I have talked to some people who had good experiences with Aszmann, but this was some time ago).

(3) I want to more carefully evaluate what Lakhiani was saying, but I don’t have the best grasp on the anatomy of Alcock’s Canal. When surgeons are decompressing that area, are they only removing scar tissue or are they cutting a specific structure to allow the nerve more room, much like you do for a carpal tunnel surgery? If so, what is that structure that they cut? I always had in my mind that if you don't have any scar tissue, there's no point in decompression, but perhaps I was wrong. Certainly many people don't have "scar tissue" in their wrists but still benefit from a carpal tunnel release?

Thanks for any thoughts!

I was in a similar position - not SO bad, could sit with pain for hours, conservative treatment failed, similar symptoms, except I got flared up with basically any sexual activity. Ended up getting the surgery in February, in no small part because of being worried about old age as well, or if I got in an accident and needed to rehab or be in a wheelchair, and how screwed I would be.

Now I’m starting to get pretty convinced my symptoms were the result of hard flaccid, not PN, despite the overlap in presentation. I’m 18 weeks out and not only
Is the HF stuff worse, I still can’t sit at all - burning starts up soon after and lasts for days. At this point I’m not sure whether this is just my life now and I have waaaaay less QOL - I did not enjoy the past 7 years but they were liveable. this isn’t.

I would make sure to do EVERYTHING you can to confirm a potential PNE diagnosis first. I was told by a few therapists and by the surgeon it seemed like PN and they thought I could get relief, and basically just took on faith that I said I had had previous nerve blocks, etc. In hindsight I wish I had pressed harder, but as you know you can get desperate.

[sightandsound]

I don’t want to scare you away from it as it seems my response is highly atypical (based on my PTs utter bewilderment) but I went into this being told and believing there was no serious downside - maybe a few miserable months and then no relief was the worst I expected. Just throwing my experience out there.

[Violet M]

I don’t want to scare you away from it as it seems my response is highly atypical (based on my PTs utter bewilderment) but I went into this being told and believing there was no serious downside - maybe a few miserable months and then no relief was the worst I expected. Just throwing my experience out there.

It's sad you were told there is no serious downside. There is always a risk with surgery.

[winged_cent]

Sorry to hear that you are going through this and I hope that you will still see improvement later on. Who ended up doing your surgery?

The PTs are generally telling me to avoid surgery. I can’t say that the surgeons are exactly pushing me to surgery, just telling me it’s an option if I want it and decide on it.

Anyone have any more insight on my Alcock’s Canal question? If you have no scar tissue but have a “tight squeeze” there anatomically speaking, does the surgery has some effect by creating more space for the nerve? And what exact structure is cut to do that?

[jaxi123]

Be very cautious with surgery. I got no relief from surgery and re-entrapped with scar tissue.

[sightandsound]

Sorry to hear that you are going through this and I hope that you will still see improvement later on. Who ended up doing your surgery?

The PTs are generally telling me to avoid surgery. I can’t say that the surgeons are exactly pushing me to surgery, just telling me it’s an option if I want it and decide on it.

Anyone have any more insight on my Alcock’s Canal question? If you have no scar tissue but have a “tight squeeze” there anatomically speaking, does the surgery has some effect by creating more space for the nerve? And what exact structure is cut to do that?

I can’t say the surgeon did anything wrong, I just don’t think I realized I likely have HF and not PNE. I was in your boat mostly - pts said don’t get it and the surgeon was like, you seem like a candidate. I think it could help.

I finally got it because my PT said I think it’s time to consider it. In hindsight I would not do it, especially as I no longer believe I have or had PNE. I just don’t think there’s any real way to tell if you truly need it or not and most of the time, you don’t.

I can’t speak for the alcocks canal thing. It’s my understanding they create more room but I don’t know how exactly.

[April]

Hi Winged_cent,

I do understand your interest in surgery even though you are functional. I felt that way myself (though now I look back on what I thought was functional and I don't know how I survived--I used ice 24/7).

I had surgery with Hibner. I only considered Hibner and Conway and picked Hibner because his TG procedure gives the surgeon more visibility and access than Conway's. My thinking was that if I'm going to do this, I want it done right and fully--I didn't want to do it halfway and leave open the possibility that some of the nerve was still embedded in the ligament. And I did not have a hard time recovering from surgery. I expected it to be difficult, but it wasn't. Hibner's procedure detaches the SS ligament from the spine to remove the SS-ST entrapment possibilities, but the SS ligament is a very small ligament so it did not have any effect at all on me. I can't tell the difference at all. And I am glad I had the surgery. I've a significant reduction in pain and am now (truly) highly functional. Anyway, those are some thoughts. Good luck with this decision.

Take care,
April

[happyman]

Hi winged_cent,

I dont think its crazy to go for surgery but at the same time only you can decide if the risk is worth it

I am dealing with a situation for 4 years that seems to be progressively getting worse. I saw pelvic pts for a year, never got anywhere. I did make a consultation appt with Dr aszmann and plan to speak with him about my situation. Hoping to speak to lakhiani in the near future too.

In my case, Ive found some strange things on my MRI. My symptoms are not necessarily the same as yours, but i relate to the dilemma of being on the fence about getting a surgery when your symptoms are annoying but also tolerable.

In regards to sightandsounds comments, I do hope things begin to turn around for him in the future. I know for violet, she said after her PNE surgery things got worse before they got better. Now she is bascially cured

Keep in touch