Surgery -- Only for the truly desperate? (Aszmann/Lakhiani)
Posted: Tue Jun 18, 2024 2:17 am
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’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!
