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Has anyone had long-term complications from pudendal nerve surgery?
Posted: Fri Aug 04, 2023 10:30 pm
by bartland
In February 2003 I had the form of pudendal decompression surgery that was originally developed by Dr Robert's team, in which surgeons severed the sacrotuberous and sacrospinous ligaments. At the time, no post-op protocol existed for recovery.
Over time I recovered from PNE, but in the years after surgery I have developed another chronic pain issue on the same side of my body. After exhaustively exploring every possible diagnosis, my treatment team thinks my issues are arising from the Sacroiliac joint being destabilized due to those ligaments being cut in pudendal nerve decompression surgery.
Has anyone suffered similar issues/complications? I'm desperate for guidance, help, or even just not feeling alone in this.
thanks,
Bart
Re: Has anyone had long-term complications from pudendal nerve surgery?
Posted: Tue Aug 08, 2023 1:32 am
by April
Hi Bart,
I had surgery with Hibner, and he severed my SS ligament from the spine and did not reattach it to the spine. It's a very small ligament and doesn't have a purpose, so he explained that it was good to detach it to remove that part of the entrapment. (My nerve appeared to be trapped between the SS and ST ligament, as is often the case.) He had to cut open the ST ligament to get to the nerve (and to detach the SS ligament). But, he closed up that cut. The ST ligament is large and very much needed. So, when you say it was severed, do you just mean cut? If they cut the ST ligament, I assume they closed that cut up, especially if you've been walking okay for all these years. Do you know what they did?
April
Re: Has anyone had long-term complications from pudendal nerve surgery?
Posted: Tue Aug 08, 2023 2:43 am
by jaxi123
I never got any better and I’m still looking for relief 20+ years later
Re: Has anyone had long-term complications from pudendal nerve surgery?
Posted: Tue Aug 08, 2023 4:35 am
by bartland
Back when I had the surgery, they cut a section out of both ligaments. I was young at the time (28) and may have fared better than others who received surgery back then...until I didn't anymore. The severe issues started within 10 years of surgery, have gone on for over 10 years, and have defied exhaustive attempts to find any other diagnosis.
April wrote: ↑Tue Aug 08, 2023 1:32 am
Hi Bart,
I had surgery with Hibner, and he severed my SS ligament from the spine and did not reattach it to the spine. It's a very small ligament and doesn't have a purpose, so he explained that it was good to detach it to remove that part of the entrapment. (My nerve appeared to be trapped between the SS and ST ligament, as is often the case.) He had to cut open the ST ligament to get to the nerve (and to detach the SS ligament). But, he closed up that cut. The ST ligament is large and very much needed. So, when you say it was severed, do you just mean cut? If they cut the ST ligament, I assume they closed that cut up, especially if you've been walking okay for all these years. Do you know what they did?
April
Re: Has anyone had long-term complications from pudendal nerve surgery?
Posted: Wed Aug 09, 2023 6:47 am
by Violet M
Hi Bart,
What symptoms are you having that make you suspect SI joint destabilization?
There have been other PN patients who believe having the ST ligament cut caused them to develop pelvic instability and SI joint dysfunction. I can't remember their names right now so I can't direct you to their posts, but I remember that people were discussing it on the PN forums. The reason I decided to go to Bautrant was because he was only cutting the SS ligament and not the ST ligament at that time and since I already had pelvic instability, I didn't want the ST ligament cut. I had some prolotherapy into the SI joint area which seemed to help stabilize the pelvis some, but I'm not sure how that would work for someone who had the ligaments cut. Also, while it's a pretty safe procedure, especially if done using fluoroscopy, it's not entirely without risk.
I have read various descriptions and versions of what happens to that ST ligament in the TG surgical approach. Prof Robert describes it in his publication as "The narrow section of the sacrotuberous ligament, located at the level of the ischial spine, is then resected transversally." He went on to say that sacrificing the ligaments doesn't affect the SI joint negatively.
https://www.pudendalhope.info/wp-conten ... sition.pdf
Later Antolak developed a different method of windowing the ST ligament lengthwise instead of transversally, but some doctors didn't think that method gave them a good enough view of the nerve. I think Dr. Conway used the Antolak method.
There seems to be disagreement among the doctors as to whether there are any negative effects from cutting those ligaments, but I know there are patients who feel they developed SI joint problems after having the ST ligament cut. So you are not alone in this. I'm not sure what the way forward would be for you. I wonder if Dr. Hibner would have any insights for you on this. He trained under Robert, so if anyone would know what might have happened to your ligaments I think he would. Maybe he could advise you on where to go from here.
Violet
Re: Has anyone had long-term complications from pudendal nerve surgery?
Posted: Wed Aug 09, 2023 7:31 pm
by bartland
I suspected that others had experienced similar issues, but have not been active on the PNE forums in many years. I sent a message about this to Dr Hibner's office last week but got no reply...maybe I'll try calling them instead.
Thank you so much for sharing!
Violet M wrote: ↑Wed Aug 09, 2023 6:47 am
Hi Bart,
What symptoms are you having that make you suspect SI joint destabilization?
There have been other PN patients who believe having the ST ligament cut caused them to develop pelvic instability and SI joint dysfunction. I can't remember their names right now so I can't direct you to their posts, but I remember that people were discussing it on the PN forums. The reason I decided to go to Bautrant was because he was only cutting the SS ligament and not the ST ligament at that time and since I already had pelvic instability, I didn't want the ST ligament cut. I had some prolotherapy into the SI joint area which seemed to help stabilize the pelvis some, but I'm not sure how that would work for someone who had the ligaments cut. Also, while it's a pretty safe procedure, especially if done using fluoroscopy, it's not entirely without risk.
I have read various descriptions and versions of what happens to that ST ligament in the TG surgical approach. Prof Robert describes it in his publication as "The narrow section of the sacrotuberous ligament, located at the level of the ischial spine, is then resected transversally." He went on to say that sacrificing the ligaments doesn't affect the SI joint negatively.
https://www.pudendalhope.info/wp-conten ... sition.pdf
Later Antolak developed a different method of windowing the ST ligament lengthwise instead of transversally, but some doctors didn't think that method gave them a good enough view of the nerve. I think Dr. Conway used the Antolak method.
There seems to be disagreement among the doctors as to whether there are any negative effects from cutting those ligaments, but I know there are patients who feel they developed SI joint problems after having the ST ligament cut. So you are not alone in this. I'm not sure what the way forward would be for you. I wonder if Dr. Hibner would have any insights for you on this. He trained under Robert, so if anyone would know what might have happened to your ligaments I think he would. Maybe he could advise you on where to go from here.
Violet
Re: Has anyone had long-term complications from pudendal nerve surgery?
Posted: Sat Aug 12, 2023 10:41 pm
by Violet M
Sometimes Dr. Hibner travels to Poland to do surgeries so it’s possible he’s traveling, but calling sounds like a good idea.