Big News - Surgery Scheduled in France 12/6/2018

[tonygret]

Hello all.

After five years of suffering from pudendal neuralgia, after seeing dozens of specialists, after having multiple different nerve blocks, Botox, physical therapy, acupuncture, massage, and every combination of medication out there, I have decided to have surgery. Here is how I came to this decision and how I selected the doctor.

Since I was first diagnosed with PN, I went from doctor to doctor looking for help. UCLA, USC, Kaiser, Cedars, Dr, Dellon, Dr. Filler, and more, they referenced my symptoms meet the "Clinical Nantes Criteria" for PNE. Over the years I wondered what that meant. Is there a Dr. Nantes somewhere that documented this criterion? Then this year my wife went to Europe without me because I cannot sit on a plane. One of the travels maps she took showed a place called Nantes in France. Ha! There is was. Unfortunately, my wife snapped her wrist in two at the Eiffel tower and her trip came to an abrupt end. She is all better now, but I took that info and followed up.

It turns out the Nantes criteria was developed in Nantes France by Dr. Roberts and Dr. Stephan PLOTEAU et al. of Centre Hospitalier Universitaire de Nantes. Also known as the UCLA of Europe. Dr. Roberts and Dr, Ploteau have done dozens, if not hundreds of these surgeries. They have published the only medical study on the results of pudendal surgery using the transgluteal approach. Here is a summary https://www.ncbi.nlm.nih.gov/pubmed/28072805.

I have been in direct contact with Dr. PLOTEAU and he has seen all of my medical charts. He feels I am a good candidate for this surgery but will need to do an in-person assessment. However, he cautioned me that the success rate is right around 70%, similar to herniated disk surgery odds. I am willing to accept those odds in the hope for some relief of this dreading condition. I live in LA and am going to Nantes France on December 1st with some very close people. I will be having a consultation with the surgeon and anesthesiologist on the 2nd. If everyone agrees this is happening, I have pe-op tests and then surgery on the 6th.

I have met with Dr. Filler in Santa Monica and Dr. Dellon in Nevada. They also recommended surgeries. Completely different surgeries that involved dissecting various nerves. Once you dissect a nerve, that’s it! There is no going back. I found Dr, Dellon to be quite unpleasant. Maybe because he yelled at me and slammed a door in my face when I asked how long the recover period was. No kidding! I found Dr. Filler to be very pleasant, but several people warned me against him. I am purposely leaving those details out.

This decision didn’t come lightly. I have been researching this for years. I have researched the hospital and doctor for most of this year. Dr. PLOTEAU has written nearly 85 medical journals and papers and has worked with other doctors on this approach. But why go to one of them, when I can go to one of the guys that pioneered this criteria and surgery and have done more than any of the others? Is it risky? Sure! But I just have to find out if it is going to help - if a miracle is possible.

Here is what I expect. Nothing. While I am very hopeful, I have had so many failed treatments that I no longer expect any positive results. However, I have to remain optimistic. I am also expecting my pain to be 10 times worse for a while as the nerves will be moved and adjacent muscle will be dissected. It’s not going to be fun, but it is really my last hope and 70% odds are worth the risk.

I am not going to discuss cost or answer any questions about cost. I feel that is a private matter. I will only say that my doctors here say my health plan will not cover any part of this. It will all be out of pocket, including the travel and 17-20 day stay in France. If this works however, I will be presenting the bill to my health provider, with a lawyer if necessary.

I know a lot of people here on the forum report they are going to have surgery and never follow up. It is a very strange phenomenon not unique to this forum. I also belong to a brain aneurysm forum and when those people don’t follow up after brain surgeries, it really makes you wonder. Did they even survive? (Yes, I had a ruptured brain aneurysm and brain surgery also). Assuming I make it back OK, I plan to do regular follow-ups for a while. At least until I know if the surgery did any good.

Until then . . . If anyone has any information on the team in Nantes, positive or negative, please chime in. Otherwise, I will be back in a little over a month.

[Violet M]

Hi Tony,

Wishing you all the best with your surgery.

Here is a link to the Nantes Criteria publication. http://www.pudendalhope.info/sites/defa ... iteria.pdf
We have referenced it numerous times on this forum.

I know that HIbner, Antolak, and Ansell were trained by Prof. Robert but I had not heard of Dr. Ploteau training US doctors to do PNE surgery. Do you know which doctors he trained? Numerous patients have reported back on surgery in Nantes from Prof. Robert but I have not heard of any reports of people who had surgery with Dr. Ploteau. It sounds like he is experienced so I can understand why you would seriously consider seeing him. There are very few US doctors who treat males with the TG approach right now so it's nice to hear of another option. My understanding is that Dr. Ploteau is an obgyn, not a neurosurgeon like Prof. Robert was. It's great that he treats men too.

Thank you for your interest in reporting back for the sake of other patients. So many patients are helped by these reports.

Take care,

Violet

[tonygret]

Violet,

I have no idea who he trained here in the states, that is what I am told. I am aware he is a OBGYN, like Hibner and many others here, they no longer treat male patients. This guy worked with Dr, Roberts and was a referral from Dr. Roberts directly to me after he retired. Ploteau is one of the authors on the only paper ever done on TG approach. It includes 100 patients and their results, about 40 of those were male. Thats a good mix.

Honestly, after consultations with some of the guys here in the states that do PN surgery, they all claim to have the only fix that works. Each surgery that was presented to me was radically different from the other and the costs were astronomical in some cases. They all including severing nerves.

The only result that counts with PN surgery is pain reduction. It is the only metric to judge by, because it directly effects quality of life for this condition. Severing nerves is risky and irreversible. The TG approach does not include severing nerves, but rather freeing them up. To me this is a more modest approach with the least risk, although it is all risky. Maybe if this doesn't work I will have to consider one of these more radical methods. But for the time being, I am sticking with safe.

Violet, am I remembering correctly that you had surgery out of country also? Can you direct me to the results in Nantes by Roberts?

Thank you for keeping this forum going. It has been a great help and inspiration and so have you.

[Violet M]

Hi Tony,

Yes, I had surgery in France but from Bautrant, not Robert. I think if I was a guy I would go for the TG approach though. I agree with you that I would be more comfortable to have nerve release surgery rather than having nerves cut.

Here is the original publication by Robert on the TG approach:
http://www.pudendalhope.info/sites/defa ... Robert.pdf

Here is a subsequent publication:
http://www.pudendalhope.info/sites/defa ... sition.pdf

Many of the people who had the TG approach from Robert used to post on the old tipna forum which is no longer going.

Anyway, thanks for sharing this information on Dr. Ploteau. I'm not sure at what point he started working with Robert but it's possible he was in on training some of the US docs we have heard of who went to France to train, but we hadn't heard of him on the forums at the time. It is good to know that someone is carrying on with Dr. Robert's work.

Take care,

Violet

[saint]

I didn't know there were different surgeries. It would seem wise to release the nerve, not cut it. I know because mine is affecting my bladder and bowels severely.

[chenonceau]

Also known as the UCLA of Europe

Where have you heard such a thing ?

Seems to me that dr. Ploteau published his thesis on endometriosis in 2016 so it seems he spent his learning years as an obgyn in Dr. Robert's unit in the Hospital. Are you sure you're not mixing the backgrounds of dr. Ploteau and Robert ? Or maybe the person you talked to did ?

Anyway their unit is like probably the best place in the country regarding pelvic pain so doesn't seem risky to me.

[stephanies]

Tonygret,

Making the decision to have surgery is tough. I know people who have done very well after the TG surgery and a few who have done very well after Dellon’s resection surgery. I recently read about a Dr. Tollestrup in Las Vegas who trained with Dellon and is now doing this type of surgery there. Anyway, I wish you safe travels and pain relief from your surgery. I look forward to reading your updates.

Stephanies

[tonygret]

I am in Nantes France and it is a little over 24 hours after my suregery. The staff and doctor have been amazing. The planned 90 minute surgery ended up taking 3 hours. Of the hundreds of these Dr Plateau has done, he said this was one of the most difficult and had to bring a a vascular guy. Apparently my pudendal nerve was not entrapped with ligaments or muscle, but rather a network of enlarged arteries.

I am not going to lie. I am in a lot of pain. But I am already up walking and moving around. With each moment comes another jolt of pain. Although I expected this, it’s always worse in real life.

More to come as things develope. Thanks for the suppport.

[tonygret]

Also known as the UCLA of Europe

Where have you heard such a thing ?

Seems to me that dr. Ploteau published his thesis on endometriosis in 2016 so it seems he spent his learning years as an obgyn in Dr. Robert's unit in the Hospital. Are you sure you're not mixing the backgrounds of dr. Ploteau and Robert ? Or maybe the person you talked to did ?

Anyway their unit is like probably the best place in the country regarding pelvic pain so doesn't seem risky to me.

I have been here for 2 days and doctor Plateau has done 4 pudendal surgeries. I did not mention his thesis and really don’t know anything about it. I did read his paper on Tg approach coauthored with several others. That is what I was referring to. If I wasn’t posting from my phone I would paste the link. I brought laptop, but it was stolen at the airport. Brand new! Oh well.

[chenonceau]

I have been here for 2 days and doctor Plateau has done 4 pudendal surgeries. I did not mention his thesis and really don’t know anything about it. I did read his paper on Tg approach coauthored with several others. That is what I was referring to. If I wasn’t posting from my phone I would paste the link. I brought laptop, but it was stolen at the airport. Brand new! Oh well.

Tonygret, I'm glad everything went well ! Now is the time to be patient and try to think long term as the pain will probably only slowly decrease over the course of the next months.
How long are you staying in Nantes ?

Sorry about your stolen laptop though

Take care !