Health Organization for Pudendal Education

AliPasha1 wrote:Hi Lotanerve,

In view of your failed surgeries with Dr. Dellon,why didn't Dr. Dellon perform a redo Pudendal nerve surgery on you.Maybe,the pain was a referred pain from Pudendal Nerve and not the perineal and dorsal branches.

Secondly,what does Dr. Hibner has to say about the new pain symptoms that you have developed after his PNE surgery.

Regards,
Ali

Here are my best answers to your questions.
Dr. Dellon said he was not going to touch Dr. Hibner's transgluteal surgery. I can't remember his exact words, but he said something like he was not going to open up a complex surgery with neurowrap around the nerve and the reattached sacrotuberous ligament. He did ask why Dr. Hibner operated on my backside when my pain was up front, in my vulva area. Dr. Hibner had told me that the pain in front could be resolved with his TG approach, as the pudendal nerve referred pain throughout the course of the nerve. Dr. Dellon said he operated "where the pain is."

As I had not had surgery on the front side of my pelvis, that's where Dr. Dellon planned my surgery. He was able to release my pudendal nerve at the anterior (front) of Alcock's canal, where it was badly trapped. He also removed a "rogue" nerve branch growing off of the perineal branch - in my operative report he described it as a neuroma. He was very happy after the surgery and was confident that he had found the origin of my pain.

Dr. Dellon thought I might have entrapment of my PFC nerve and inferior cluneal nerves. I am definitely tender at the ischial tuberosity and several places along the nerve branch and jumped when he pressed those areas. However, when he did the injections I did not get any relief. Since the pain in the front side had returned and it did not get numb either when he injected it, I think he didn't know what further surgery he could do.

As far as asking Dr. Hibner about my continuing pain after his surgery, I did try to contact him many times, but I would only get return calls from his P.A., Lisa Wadsworth, and she always said she would have to ask him and get back to me. I know he was swamped at the time (and I imagine he still is).

I had the opposite experience with Dr. Dellon. It was a total surprise when, shortly after returning home, I received an email from him asking how I was feeling.
I learned that Dr. Dellon regularly stays in touch by email -- when I have questions, he returns my emails within a day, sometimes even within hours.

Do I wonder and second guess about the procedures and surgeries I have had by different doctors? Do I worry that maybe something has been missed, or something has been done "wrong"? Yes, I have, just like any of us who have not gotten better. I think that's normal. But I choose to believe that even when I have felt doubts or concerns about any of the doctors, surgeons, and even physical therapists who have worked on me along this journey, they have all done their best, and have tried everything within their power to get me better. There is much I don't know about the challenges they face. And as far as the surgeons who are pioneering pudendal and other pelvic nerve surgeries, I'm glad they are driven to do what they do. ----- I know I could never pick up a scalpel....

Lottanerve, your last paragraph is so true. These doctors are doing their best to help us but when we don't get better it is hard not to second guess their opinions/suggestions and our decisions based on what they told us. You can't look back and can only move forward knowing that everyone one of us has done our homework and made the best decisions possible. To better days ahead for all of us.

I'll second that thought....."To better days ahead for all of us".

You are all hero’s in my book. Courageous, tenacious and generous are just some of the qualities that come to mind when I read this heartbreaking and yet inspiring thread. Your stories are deeply moving and, as reflected in the many supportive responses, are equally deeply felt by many of us.

Anyone who attempts pudendal nerve surgery is a pioneer of sorts, all of the results, good and bad, affect the future medical advances for everyone to learn from. Even though I only know of you through this cyber world, it is a powerful connection. Sometimes we don’t get to see the ripple effect from brave actions, believe me your ripple is hugely felt here and is sent back with a tsunami of hope for improvement from where you are at in this difficult journey.

Wishing you the very best future.
Fall_Girl

Hi,

This PNE drama has been going for the last 15-20 years when Professor Shafik of Egypt and Professor Roger Robert started doing PNE surgeries,The sad truth is that very few people get better from these surgeries as compared to the 70% PNE success rates published by Professor Roger Robert,the Houston team,Dr. Hibner and 80% claimed by Dr. Dellon now.

There is no follow up by most doctors and they want to forget that even they performed the surgery.

Unfortunately,their results for PNE srugeries speak for themselves and as far as their results are concerned,there is nothing to be proud of.They are shameful

Regards,
Ali

Lottanerve, you have been through so much and as a veteran of PNE pain you are an expert in this subject as far as I'm concerned. I appreciate the fact that you are not blaming anyone and you are continuing to be proactive in searching for solutions.

There are doctors who will only perform surgeries that have a high rate of success because the threat of lawsuits is just too great in today's litigious society. I know people who are surgeons or have spouses who are surgeons who tell me this. So I have a huge amount of admiration for all of the PNE surgeons who are doing everything they can to help us even though they know their efforts might not be successful, even thought they have an extremely busy practice, and even though they know that they may have to shoulder some blame from patients who do not get better. I think the important thing is that they give the patient realistic expectations.

Follow-up is great but it takes time and $$$$$$$ -- something none of us have enough of. That's one reason it's so important for patients to come back and report their experiences here and I have great respect for all of you who have done that, even though the news may not be good.

AliPashi, regarding success rates I think the problem is as a patient our definition of success is not the same as any other the physicians who perform the surgeries. I remember when Dr. Howard did my obturator decompression surgery he told me if I had 50% improvement in my pain he would consider that a success. I wanted 100% improvement to consider my surgery a success but the few published papers on obturator decompression surgery didn't bare out 100% as any likely outcome. The majority of patients in the published literature did have improvement in pain but no improvement in function.

Dr. Dellon in his 2009 publication on surgery on patients with upper and lower extremity CRPS defined success in his method section as "Outcomes included measurement of pain, level of drug use, improved function as determined by activities of daily living and return to work. An excellent result required the pain level to be from 0 to 2, a cessation of opiate use, the ability to use the upper or lower extremity for normal activities of daily living, and the return to work (if previously employed) or school. A good result required the pain level to be from 3 to 4, an occasional use of a non-opiate, a slight restriction of activity of daily living, and the return to work (if previously employed) or school. All impairments greater than the above criteria were considered a failure." In other publications he might have used a different definition of success but as you notice you can still have pain and be considered a success by the standards he has set.

I think it would be interesting to come up with a standard definition of success from a patient's perspective.

Hi Violet,

How do you propose to get better results.I am sure that you aren't going to get better results by applauding the surgeons for their poor results,for no follow-up or charging US $30,000 or US $36,000 for bilateral PNE surgery as Dr. Dellon does and refuses to take insurance.

The bottom line is that the patients are fed up with the results.People are diagnosed incorrectly ,People develop additional issues and the doctors don't even have the decency to follow up or warn them of the problems that they might experience after the surgery.The patient goes in good faith that he will improve, but instead of getting better he comes out worse and develops additional symptoms which he had never wished for before the surgery.

When patients bring the additional complaints of pain to the doctors attention,the doctors have the audacity to lie in their faces and tell them that this is the first time that they have never heard such a thing or they are clueless.

The Most important and foremost thing that Professor Roger Robert has failed to convince the Medical world about pudendal nerve Entrapment because of poor results and additional damage that is done to the Pelvis because of the invasive nature of the surgery especially severing of the ligmaments which has led to additional pain symptoms and Pelvic weakness.

Following is a fine example of the Houston team who have DONE more than 400 surgeries in the USA and how poor patients are misled.

http://www.tipna.org/forum/viewtopic.php?f=16&t=7110

However,not to deviate from the subject,the dorsal nerve surgery both Dr. Dellon and Dr. Aszmann have not lived upto the expectations.However,none of the male patients had their anterior and posterior Alcock's Canal explored and decompressed which has been done in the case of Athena's mom and we are hopeful that she will get better and cured in the coming months.More research needs to be done regarding the Peripherial nerves in the Pelvis,because the Pudendlal nerve isn't the only source of all problems in the Pelvis.
Take care,
Ali

Ali, I'm very sad for all of you who aren't getting improvements from surgery. I wish there was a magic proposal on getting better results but in the end, we are all going to die even though physicians have been trying to find cures for thousands of years. It's a sad world we live in.

I said that patients need to be given realistic expectations and if doctors aren't doing that then I can understand patients being upset at them. I am not applauding any doctors for poor results, lying to patients, or publishing misleading results. NYT has given a great explanation on the definition of success from the doc's point of view.

The PNE docs could abandon us and just do "tried and true" surgeries. It would be easier for them. From what I see, most of them are trying to make improvements.

In regards to surgical success rates/patients getting worse post-op. Here is Dr. Hibner's consent for decompression http://tinyurl.com/2fzazo3

If you consider a success to be pain-free then only Dr. Hibner claims that only 33% of his patients will be pain-free 12 months post-op (not 70%). He says another 33% will have some improvement in pain. This could be a reduction of pain from level 10 to level 9. I like it that it says, "The longer the time neuropathy is present, the positive outcomes may be lessened". It also says that there is a risk of injury to the nerve and that 1% get worse. Now this 1% may not be completely accurate. In September when I talked to Dr. Castellanos (Hibner's fellow) he said that Hibner had done around 150 pudendal decompression surgeries and at that time they new of 1 person who claimed to be worse after surgery. I know of at least 2 Hibner patients (from this forum) who feel their decompression made them worse so that would be more than 1%.

I agree Ali, there is very poor follow-up it seems. It shouldn't be that way, but like Violet has said follow-up takes time and money. Now, with computers the way they are these days doctors should have the capability of having a website/database where patient enter data at 4,6,12,18,24 months and then the data is complied for doctors to get their statistics from. But someone has to design a database like this and since pudnedal nerualgia is such a small % of the hospital's (that the PN surgeons are working under) revenue the hospital is not likely to spend the money to develop a system like this. And we have to remember too that most of our doctors are still practicing other medicine and doing other surgeries than just PN decompression. The thing is we need help and these doctors are providing it. While better follow up would be ideal if they can make it without it (and they will....people want to get better they aren't going to stop having surgery due to bad follow up) then most likley doctors will keep doing things the way they have been because it is working. It may not be perfect, but it works. All we can do is present our concerns and give the doctors suggestions as to what they could do to offer better follow-up and maybe one day things will get better.

I have not had surgery and have not decided for sure if I will have surgery in January or not, but I do feel like I am very much aware that I might get worse (hence my hesitency). No one has promised that I have a 70% percent chance of getting better. If anything I feel like I have been warned to really exhaust all other non-surgical options first.

It's unfortunate that there are no guarantees with surgery, but that is the situation we find ourselves in. Probably always will, although I know there will be better to come. You have been extremely diligent and brave to make the decisions that you have Ali, I wish the outcome had been better for you, you must be heartily sick of it all.
I still will applaud any and all of the surgeons and pain consultants who have taken our cause on board. I need that surgical hope to cling on to.
What we need collectively is for the problem to be more widely recognised to enable an earlier diagnosis and treatment. Then if surgery is suggested the patient can be more confident of an improvement. I'd be ecstatic with 100% improvement (I don't even expect it) over the moon with 50% and rather pleased with 30%.
Although, very relevant to all of us, I really think that the money and insurance question is a separate one but I can understand your frustrations Ali. I hope things improve for you.
Given the chance, I'd sign it faith http://tinyurl.com/2fzazo3
Take care,
Helen