Update after visiting Dr de Bisschop

[Zachco]

Hello everyone , I wanted to write about my appointment I had with Dr de Bisschop one month ago. I will first describe my history of diagnosis shortly:
My first block was performed in Nantes by Dr Riant after a consultation with him and another consultation with Dr Labate .This first nerve block was performed at the ligaments level and it was very well tolerated by me. After this block, pain became a lot worst while walking and standing for a prolong time for 1 month. I felt weakness in my legs . This pain was attacking me mostly in the groin area (left and right) It had also spread down to my inner thighs and the front of the pubic. The second time I came to have an infiltration in Nantes Dr Riant eventually performed cluneal block that was very well tolerated and was at the lower part of the buttocks where it meets the thigh .This new location was because he related my groin pain more as an inferior cluneal pain than pudendal pain. He told me he prefer not to do any more blocks on me.
In my meeting with Dr de B he first made a short interview, next was The EMG, next was ultrasound and dopler by Dr R.Nundlall , then we talked some more and last he preformed a PN block . In our conversation I asked him where does he decompress the inferior cluneal nerve as I previously read he mentioned he releases it in his operation. He said that in his operation he open the infra periformis area above the Ss ligament where pas 3 nerves : the pudenal nerve, the Posterior femoral cutaneous nerve and ischiatic nerve ( the inferior cluneal nerves are branches of the posterior femorl cutaneous nerve) and so , a compression at this level will may result in pain in all related innervated area of those nerves.
The ENG findings marked a delay on both nerves, left and right. He told me, on the right side, the compression on the nerve is more on the ischiorectal fossea (under the Ss ligament), and also a little above it on the infra periformis area. On the left side it was the opposite (nainlt in the infra periformis and a bit in the ischiorectal fossea . this was matched and confirmed with the results of the ultrasound scans of Dr R.Nundlall . It is very interesting, because I can testify my pain on the right side is more near the rectum (with the feeling of a foreign body sometimes and in the groin on the left. I have also sometimes pain on my both feets that comes and disappears, but it is mostly on the left feet. This was explained as ischiatic nerve pain from perifomis compression (both Dr de B and Dr Riant explained it this way). I also had Emg investigation for my obturator and ilioinguineal nerves to see if they relate to my groin pain , with no special finds . the Posterior femoral cutaneous nerve could not be investigated with the EMG because it get's mixed with the ischiatic nerve.
The nerve block was done on both sids with no CT and no ultrasound, only by touching with his fingers inside my rectum . AT first I was very scared about it because I previously read many times ,this must be done only with visualization , but after Dr de B assured me hi never had any accident during such an infiltration, I decided t o have it a and I can testify, this block was a lot more balanced than the one in Nantes in my feeling . Both sides were completely numbed. during the injection the anesthetic were released all along the nerve as the needle moved through all nerve locations. He also told me it is possible that last time, I had a very strong pain in the groin after the injection because the liquid was all inserted to one spot and was pulling on the nerve. The block cost only 80 euros !EMG and ultrasound 400, all together was 480 euros .
next week I have Consultation with Professor Robert. and afterwards I will have to decide What surgery do I choose. Here are main things I have to consider in the different fashions of the two surgeons before taking this decision :
-Professor Robert is a lot more experienced as a surgeon with a 20 years experience.
-The TG is the most widely used method of decompression surgery offering the greatest visualization of the nerve during surgery.
-In the perineal approach by Dr de B, no ligament is been cut. this is a different method than Dr Beco's. I think I read somewhere Dr Beco no longer spears all ligaments after he had some better results if cutting the Ss . Can anyone tell if I'm wrong about it? Is Dr de B the only surgeon who spears all ligaments in his operations today?
Dr de B told me he never cuts the Ss ligament and he only releases it with his finger. I read that ezer wrote in one post " he selects patients that get excellent pain relief from nerve blocks. The small balloons are placed and inflated to create more space for the nerve. It seems to work when the problem is at the piriformis or ischial spine." and "The surgery could probably be helpful as a "redo" for people that have not improved with the more invasive procedures", but if I understood it well from Dr de B, he thinks his method is good for all cases. He told me that now he has performed more than 200 operations . moreover than that, the PN nerve can pass before , behind or trough the Ss ligament . With his operation method he didn't see any different in the success rate of all 3 physiological variations. He is very much against cutting the ligaments. he said this is very common to have pelvic instability from severed ligaments or periformis syndrome, which scares the hell out of me as I already have sometimes pain under my feet from the ischiatic nerve .
The bottom line is Dr de B believes PNE is not a ligament problem unlike many other Dr's that have previously described in their publications they have found the nerve pinched by the ligaments and I have to decide myself , whom to follow.
-Dr de B claims to have a very high success rate ; " at least 80% improvement in more than 80% from the cases " as he told me. he also gave me a new publications in french with 43 patients operated by him with the same success rate as the 16 patient publication.

I hope this information is useful for others . Sorry for the long post. any comment on this conflict will be appreciated.

[Violet M]

Thanks for the info Zacho and I wish you the best whatever you decide.

Have you read about Dr. de Bisschop on the French forum yet? I think there are more of his patients who post there than on this forum. It is my understanding that he has not trained in a surgical specialty but is a general practitioner who has learned to do this specific surgery -- but I could be wrong.

I am not a surgeon but from my own experience I believe the ligaments can be a major issue in causing PNE. I had the SS ligament cut and rather than cause my piriformis syndrome to get worse, it is actually gone now because as the pudendal nerve calmed down after surgery, the piriformis muscle finally started to relax. But, I know of people who have complained of SIJ problems after the TG surgery so I can understand why you want to think twice about having ligaments severed. It is a difficult decision.

Violet

[helenlegs 11]

Great, informative post Zacho. Thank you. Sorry I can't offer any answers to your questions,but you did answer a question I had on EMG . Hopefully you will get feed back from the French forum as Violet suggested and here of course.
Wishing you good luck in whichever you decide upon, difficult choice. Sometimes more information makes it more confusing but the research you are doing is invaluable. Let us know the outcome please.
Take care,
Helen

[ezer]

Zachco,
I recommend reading the French forum pudendalsite regarding Dr.de B's pudendal surgery. There seems to be some controversy regarding the statistics. Some people report getting worse from the intervention.
None of us have any experience with that new methodology so I think you should really look on that forum for answers.

[A's Mommy]

Zachco,

Very interesting and informative post you made. I wish you the best and pray you make the right decision. This is a tough one. Please keep us updated on your choices.

God bless
a's Mommy

[Zachco]

Thank you everyone for commenting my post.
I did try to look in the French post before posting here and also after I was advised . Unfortunately I did not find it very helpful.
I was not able to find more information there than in the report of pianogal . My french is also very bad , so I read it translated with google and then look for the origin only in case , the translation is not clear.
I don't think , looking in the forums reports can reflect any of the Dr's success rate. It is very natural that those who had a good improvement or got cured will not use it , leaving it all behind and will continue with their life . Nevertheless the forum is the best source I can use before taking my decision.
Of course, I wish to have the surgery of Dr de B that sounds a lot less invasive and get myself cured with out damaging the ligaments.
I must admit ,the amazing results of 89% success sounds to good to be true. But on the other hand this is possible that it is true and after so many years I suffer and so many useless treatments I am too afraid to raise hopes and be over depressed from one more failure . This is so complicated because even a 99% success Dr can never promise me I won't be his 1% . I am sure you all know what I'm talking about and what's up in my head.
Thank you everyone. If I have any useful information , I will update you.
If I'm not in the forum, this is because I am depressed from visiting it on a regular base. ( I try to focus my day in art , which is also my profession. It makes me feel better. ) Anyhow you can always contact me on my mail: zachshoulders@gmail.com
Maybe ,if you have questions regarding the infra cluneal nerves , I can help.

[ezer]

Zachco,
It looks like you made up your mind. I still find a little bit odd that Dr.de B's views on the ligaments involvement run contrary to the majority of other PN doctors.
People were pretty vocal on the French forum and eventually Dr.de B. came himself to defend his reputation.

[Zachco]

Well, I'm Still trying to Take decisions regarding what kind of operation and which surgeon I'm going to choose . I temporarily live in Europe so my choice of Dr's is a little different than most of you in this forum, but maybe some of you whom are more experienced than me will be able to comment this subject? The main dilemma for me now is that The pain I have is existing in many different areas and it is suspected to be originated from more than only the PN. The pain I have in rectum ,penis and perineum Is all relate to the PN ( right to the rectum is the worst pain when it's on). The groin, back of the thigh and even sometime under the feet is related according to Professor Robert to be more an inferior cluneal nerve and perineal ramus nerve pain those nerves, are actually branches of the posterior femoral cutaneus nerve. Here is an abstract of an article of the Nantes team about this condition: http://www.springerlink.com/content/qgl51q425387504h/
After visiting Dr de Bisschop who declared he can very well decompress with his method of inserting a balloon probe and liberating the whole infra piriformis area which is suspected to be the Target where 3 nerves pass and can be compressed (pudendal, posterior femoral and sciatic ), I looked in the French forum and searched for any good results of patients . Unfortunately results and testamonies of those who have experienced with this procedure where very far from his 90 % success in 3 month deceleration, so I decided to contact Dr Beco in Belgium who also works With a trans perinal surgery but not the same procedure . He told me that he can not reach the infra cluneal nerves with his method but hinted that in his opinion, such pain can be not necessarily an entrapment of another nerve rather a side effect from the PN. He also said he now thinks it is necessary to cut the SS ligament in order to free the nerve unlike Dr de Bisschop. here is his explanation : http://www.youtube.com/watch?v=cXrRFo7f ... r_embedded
Professor Robert has told me he prefer to perform a bigger TG bilateral surgery ( a 7 cm cut ) in order to approachthe PN and the inferior clunealnerve, in both sites( at the passage of perineal ramus under the ischium, or upper the level of sciatic spine and the piriformis.) of course this kind of surgery is a lot more invasive than the one can be seen in Dr Beco's video, but the question is , is the best strategy ? Did anyone here who had pain similar to my description , had such a TG surgery to treat both nerves with a good success or was relieved even only with a normal decompression surgery?
Sorry for a long post once again, I'm really trying to have confidence in my decision that I'm gona take.

[helenlegs 11]

It's such a tricky one Zachco, the only other thing I would throw in is the sciatic nerve would probably be responsible for the under feet pain but that could just be from a tight piriformis muscle (PS) caused By PN. Many people have said that their PS problems are resolved following pudendal decompression.
Thanks for such an informative post (again) Let us know how you proceed. Sorry I can't be any more help.

[Zachco]

helenlegs 11, I can see in your profile, you have benefited from a piriformis botox injection. it is also marked you suffer from; sciatic, pudendal and gluteal entrapments at sciatic notch. Do you also have the symptoms of pain in groin area? this area is marked on anatomy illustrations as ischiopubic ramus and The nerve that reach this area , the posterior femoral cutaneus and its inferior cluneal branches pass between The PN and the sciatic Nerve .Other nerves and branches, I can see pass between those two nerves, are the inferior gluteal nerve and thenerve to superior gemellus and obturator intarnus.
The symptoms I have under my feet (hot burning in the toes area) are well known to the PN doctors . I don't always have it and it appears usualy in days when I am very active ( long standing /walking) it has started after climbing a mountain on a hike I did with a friend 2 years ago. that time I was suffering already from my PN symptoms but I was a lot less aware to my problem.
this days I try too find a DR who can well decompress this whole area between the piriformis and sciatic notch other than the TG surgery. I have no doubt this method is beneficial for many patients and professor Robert and his team are super reliable for it ,it just that it described as a very invasive one .