Health Organization for Pudendal Education

Hi Celeste, I just want the same thing as you, which is for improvements in PNE surgery for all patients. So far, the success rates given for all surgeons who do PNE surgery are simply either not good enough or not for certain. All, I am doing is stating the possible complications of some ways of doing the surgery. I hope that everybody will consider everything as I am before deciding on which surgeon to go to for this. Take care
Shawn

I think that all the PNE surgeons should come together and work together towards finding the best surgical approach to help us. Praying for that to happen one day and for everyone with PNE.
Shawn

good luck shawn

Thanks Celeste I think you are a great person for trying to help PNE patients like I am trying to do. I think if patients, who may have some difference of opinion can come together, then why can't these surgeons seem to come together to try to improve on PNE Surgery? If we are all united on trying to find better cures, and improvements in surgery for this to try to help those with PNE, then we will improve on these things sooner. So, it is important for us all to express our opinions and work towards our common goal which me and Celeste and everybody with PNE are trying to do. Everybody, please remember that we are all in this together and all want the same thing. Hoping for Dr. Hibner, Dr. Ansell, Dr. Renney, Dr. Bautrant, Dr. Conway, Dr. Dellon, and any other PNE surgeon to get together one day and focus on helping us instead of them not working together on this.
Shawn

Shawnmellis, I don't know if you are aware of this or not but these dr.'s meet at conferences, talk, debate, present data, usually on a yearly basis. Many of them talk on a regular basis via email so I disagree with your thoughts that these doctor should pull together because they already have. They all need to be independent, think on their own, have their own opinions and then duke it out because in the end that is how progress will be made for all of us and future PN patients. I am also well aware that some of the PN dr.'s have varying opinions of each other but that is okay because out of those varying opinions will arise new and better treatments. The four PN dr,'s I have seen are all incredibly passionate about trying to get the best outcomes as possible for their patients and I am sure the other PN dr.'s are the same. We as a community are extremely fortunate that we have a group of dr.'s who only want the best for their PN patients.

Hi, Nyt, I know that Dr. Hibner, Dr. Conway, Dr. Antolak all talk on a constant basis and work together on trying to improve on surgery for PNE patients. This is really not what I was referring to. What I was referring to is these group of doctors talking with the other group of doctors who don't think it's necessary to suture back the sacrotuberous ligaments such as Dr. Renney, Dr. Ansell and Dr. Robert in France. While I agree that some surgeons have different opinions and approaches and that may be good, I think that the reason why there are some major different opinions and approaches is because this surgery is still in the early phases of being made better, otherwise there would be a higher success rate for PNE surgery as a whole. I'm really not sure how much communication and collaberation goes on bewteen this group of sacrotuberous ligament cutters who don't suture back together the ligament versus the other group (Dr. Hibner, Conway, Antolak, etc. ) who do. If in fact these two groups do work together and talk with each other I wish it were more often than once a year for our sakes, and I wish that an actual study from patients who have had surgery with them would be done by the non ligament suturers on the possibility of SIJD or Piriformis Syndrome so that we can really have a better picture of this approach to surgery, and that we had a really good reason as to why they don't suture back together the ligaments. So far, I still don't understand why they don't just suture back together the ligaments as the one group of surgeons do. The main reason that I have seen so far, is because they don't see it as being a necessary ligament to support the pelvis, pirformis muscle, and the Sacroiliac joint, but there are PNE surgery patients and other studies which suggest otherwise. Now, if they are not suturing it back together not because they are worried about these two new problems occurring, but because they feel it is the only way to really totally stop the compression then that is understandable, but I guess when Hibner releases his latest surgery results this year and if his results are great, we will know whether it is really necessary to leave the sacrotuberous ligament cut instead of suturing it back together. Just my opinion.

Shawn

If there's a surgery that you want, then go to a doctor who does it. Do not go on a holy war trying to get anyone else to do it. Just get what you feel you need and move on with your life.

Celeste, I'm not on a holy war. I'm on a quest to help PNE patients and improve surgery as you are. That is all.God Bless
Shawn

shawnmellis wrote:Celeste, I'm not on a holy war. I'm on a quest to help PNE patients and improve surgery as you are. That is all.God Bless
Shawn

Stop telling me or anyone else what quest I am on. You do not speak for me and you never will.

Furthermore if you think surgery needs to be improved, that's great. You won't accomplish it on the forum, though. If you really are a pain patient then you have no shortage now of surgeons to choose from and that includes surgical differences of all stripes. Pursue what you want, but why you insist on tying up the forum with posts about what you are trying to do for patients and forum members isn't really making sense.

Okay Celeste, You are right, I do not know what quest you are on. Mine is to help PNE patients, work together, and talk in a rational manner with other PNE or former PNE patients, including you to help bring improvements and to help people, and also help bring improvements to the surgery for PNE, and that is all. I have not attacked you or anybody else on here or even a surgeon. I have simply questioned things and brought up reasonable questions regarding some approaches to PNE surgery and also topics brought up by other PNE surgery patients who have gotten Piriformis Syndrome or SIJD after surgery in which the sacrotuberous ligaments were not sutured back together. I do think that all surgeons have the best intention of helping to cure us. II think it is important to discuss our differences without getting mad or upset, which is what I am doing. God Bless.

Shawn