Health Organization for Pudendal Education

AliPasha1 wrote:Unfortunately,Dr. Conway has 0 % success rate with TIR surgery approach to our knowledge which we can be wrong.

Hello Dear Ali! Well, I think you're right in saying that "to our knowledge" he has a 0 success rate with the TIR approach, but there are so many other factors that I don't think are being taken into consideration. First and foremost - not all PNE patients post. Not only Conway patients, but other patients as well. I would love for more Houston patients to post. I know the Houston team is very busy doing decompressions, but where are the patient reports? Just becuase they don't post doesn't mean they're not out there. Secondly, I spent a significant amount of time speaking privately with some of Dr. Conways patients before my surgery. Luckily, a few of those patients had the Potter MRI and were found to be entrapped in areas not accessible by the TIR approach. A few others had actual nerve damage and/or other pathologies. So, does that really make their surgeries a failure? I don't think so. And as we've discussed, you're a good example of this. You had the TIR approach and weren't completely cured. You had some improvements after your surgery, yet were still in pain. WHY?!? Because you're still trapped in other areas. Does that mean your surgery with Dr. Bautrant was a failure? It seems to me, he successfully decompressed what he could with the technique he was using at the time. I have no words adequate enough to thank you for your involvement with bringing Dr. Potter to our attention. The MRI may not be the Holy Grail, but it was very helpful in answering THE question WHY. What successful TIR surgeries mean to me, is, that these people were trapped in the Alcocks Canal, or where ever that approach could address. No other entrapments, neuropathies or pathology. Until Dr. Potters MRI, we the patients AND the doctors couldn't even begin to guess WHY some people weren't getting better. So, thank you, Ali!!!
Warmest regards,
Karyn

Karyn wrote: First and foremost - not all PNE patients post. Not only Conway patients, but other patients as well. I would love for more Houston patients to post. I know the Houston team is very busy doing decompressions, but where are the patient reports? Just becuase they don't post doesn't mean they're not out there.

A tiny minority post, more lurk, more still never even look at the website much less the forum. I have encountered "lurkers" who have come to our practice knowing who I am which is always kind of surprising! I know some people enjoy passionate debate but I think the downside of it is, it intimidates potential posters and in so doing, reduces the amount of data we have about outcomes.

HerMajesty wrote:

Karyn wrote: First and foremost - not all PNE patients post. Not only Conway patients, but other patients as well. I would love for more Houston patients to post. I know the Houston team is very busy doing decompressions, but where are the patient reports? Just becuase they don't post doesn't mean they're not out there.

A tiny minority post, more lurk, more still never even look at the website much less the forum. I have encountered "lurkers" who have come to our practice knowing who I am which is always kind of surprising! I know some people enjoy passionate debate but I think the downside of it is, it intimidates potential posters and in so doing, reduces the amount of data we have about outcomes.

I have met a lot of Houston patients who joined the forum only to read and never once posted; they were willing to PM, call, email, or Facebook, though. I'm certain that all of the doctors have patients who do not participate in the forums. It really isn't for everyone, no matter what the climate is like. Some just want to read and not interact; I think a lot of it has to do with many of them being older and not really into internect connections with unseen people. I think they benefit from others' willingness to participate, and while it would be great if they would let us know how they're doing post op, they most certainly are not obligated to do so and we have to accept that.

Hi HM!
Welcome back! I hope your trip to MA was a huge success and that your son is doing better!

HerMajesty wrote:I know some people enjoy passionate debate but I think the downside of it is, it intimidates potential posters and in so doing, reduces the amount of data we have about outcomes.

I'm sorry - maybe I still have post-op brain, but I'm not sure how this statement fits?
Thanks for clarifying and I'm so glad you're back!
Love,
Karyn

Dear Karyn,
You are going to be fine and if you don't have a full recovery you know where to take the next step for your peripheral nerves.That's why I said to our knowledge.
You are right that my surgery with Dr Bautrant wasn't a complete failure and I had a few improvements and that's why Dr Potter's MRI played such a pivotal role in finding the missing point which are the peripherial nerves.

You are in my prayers.

All the best in your recovery,
Ali

Karyn wrote:Hi HM!
Welcome back! I hope your trip to MA was a huge success and that your son is doing better!

HerMajesty wrote:I know some people enjoy passionate debate but I think the downside of it is, it intimidates potential posters and in so doing, reduces the amount of data we have about outcomes.

I'm sorry - maybe I still have post-op brain, but I'm not sure how this statement fits?
Thanks for clarifying and I'm so glad you're back!
Love,
Karyn

Hi Karyn, Thanks, everything is going well! Good seminar, son is taking it all like a champ...just like you!

Re how the statement fits: I was trying to say that, I am kind of surprised at the number of non-posting lurkers that are out there (probably I just can't relate bacause I have never been a lurker anywhere, it bores me).
I would like to see more people posting instead of just lurking because then we would have more anecdotal data about successes and failures of various techniques.
My personal theory is that the more safe, welcoming, and supportive the board appears, the more people would be comfortable posting. Some of us are thick - skinned and like a good debate (I'm guilty!), but I think in the long run, the debates intimidate some people from posting. I was not referring to this particular thread, just in general reflecting on what would encourage more people to post their experiences and outcomes.
It is so useful! When Yoland posted on the Tarlov cyst thread about her surgical experience, it really did have a major impact on me; I have decided to pursue a consult with the same doctor to see if I am a candidate for the same surgery. That was just ONE person's experience and that she bothered to post it was extremely helpful. Really I just want to encourage as many people to post their outcomes as possible, this means YOU, lurker person

Over the years, I've come to see that there are a lot of lurkers out there who've been just reading forever. I too wish they'd just say something here and there. We can all learn from their experiences and they, in turn, could find out some good information if they'd just post about their experience here and there. I guess some people are just different, obviously.

Greg

GregT wrote:Over the years, I've come to see that there are a lot of lurkers out there who've been just reading forever. I too wish they'd just say something here and there. We can all learn from their experiences and they, in turn, could find out some good information if they'd just post about their experience here and there. I guess some people are just different, obviously.

I agree, Greg! I've learned more from this community than I have from any doctor. I guess I have to put it into perspective that this is an educational site, in addition to an online support group and people can contribute, or not ...
Warm regards,
Karyn