Gabriel81 wrote:e have a "functional/neurological dysfunction" independent of the mechanical compression that can cause synptoms persistence after surgery? How you can estimate it?
De Bisshop:
Hello,
Cutting ligament is for nothing : Thère is never conflict with ligament. 92% of the patients I operated get an improvment better than 80% (more than 2000 patients )
Sincerly"
Never a conflict with the ligament? That's a pretty amazing statement and completely contradicts what the literature says and what many other PNE surgeons would tell you.
His claims for improvements are better than the what the literature is saying too. Do you know any patients of his who have gotten improvement from surgery from Dr. deBisshop?
Violet
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
winged_cent wrote:Luckily for us, there actually seems to be a "wave" of patients on the French forum for are getting surgery with Dr. de Bisschop right now, including several on the same day. One of them was able to post on the evening of his morning operation, which suggests that it isn't too terrible. I do wish that their descriptions were a little bit more specific than "everything's going pretty well".
I must admit, I would feel more comfortable if I were getting statistics that were like "30% improved, 60% not really, 5% feel worse" than the "Potemkin village" statistics of 90%+ improvements. If the doctor is giving out false information, it really does reduce my excitement to let myself get cut open by him. But I hope that in the next couple months we can get good real information about the course of the post-operative recovery from at least some of the new French patients.
I ask to winged_cent or someone that can read french if there are news. Thanks a lot.
Violet, no I don't know patient treated by DeBisschop, anyway I think my case is very difficult and I'm not very much encouraged by percentages.
2004 Urethral burnings, chronic prostatitis diagnosis, unuseful drugs. Lately added chronic pelvic contracture.
2011 Pudendal Neuralgia diagnosis, nerve blocks and oral drugs.
2013 Two neuromodulation surgeries.
2016 Possover negate Pudendal Neuralgia (no pain elicited on rectal exploration), says problem is more central but MRI- neurography show nothing.
2017 De Bisshop found Oedema/hyperpressure and neurological abnormal response on intrapiriform area, most on sx.
Failed injection blocks.
I am in the process of waiting to hear if I will be a candidate for an L5S1 epidural performed by Dr. Choll Kim at the Spine Institute of San Diego. Violet, this is the diagnostic they use.. a successful epidural at L5S1.
I actually had an epidural into this area in 2013 when my L5S1 disc bulge was first discovered, and it was unsuccessful. I didn't feel any improvement or even numbness anywhere afterwards. However, having spoken with his PA, they apparently will be using a different concoction of medicines (more for numbing than pain relief, which I guess would be steroid), and say that there are several places to inject at every 'level.' Meaning, there's still hope for me that the epidural they would perform, could actually show numbing in areas where at least some of my pain is experienced.
I've had at least a dozen nerve blocks in different areas without much success. But if there's anything I know, at this point, about blocks, it's that the results are very variable depending on the exact location of injection which can be difficult to get right, the person doing the block, and the medicines used.
April, the Dr. I've been seeing for the last year for my issues is Dr. Irwin Goldstein at San Diego Sexual Medicine. He sees patients from all over the world for problems like various types of genital pain or dysfunction.
Do you know if he have experience in decompression surgery and in general skills about pudendal nerve issues?
2004 Urethral burnings, chronic prostatitis diagnosis, unuseful drugs. Lately added chronic pelvic contracture.
2011 Pudendal Neuralgia diagnosis, nerve blocks and oral drugs.
2013 Two neuromodulation surgeries.
2016 Possover negate Pudendal Neuralgia (no pain elicited on rectal exploration), says problem is more central but MRI- neurography show nothing.
2017 De Bisshop found Oedema/hyperpressure and neurological abnormal response on intrapiriform area, most on sx.
Failed injection blocks.
winged_cent wrote:Luckily for us, there actually seems to be a "wave" of patients on the French forum for are getting surgery with Dr. de Bisschop right now, including several on the same day. One of them was able to post on the evening of his morning operation, which suggests that it isn't too terrible. I do wish that their descriptions were a little bit more specific than "everything's going pretty well".
I must admit, I would feel more comfortable if I were getting statistics that were like "30% improved, 60% not really, 5% feel worse" than the "Potemkin village" statistics of 90%+ improvements. If the doctor is giving out false information, it really does reduce my excitement to let myself get cut open by him. But I hope that in the next couple months we can get good real information about the course of the post-operative recovery from at least some of the new French patients.
I ask to winged_cent or someone that can read french if there are news. Thanks a lot.
2004 Urethral burnings, chronic prostatitis diagnosis, unuseful drugs. Lately added chronic pelvic contracture.
2011 Pudendal Neuralgia diagnosis, nerve blocks and oral drugs.
2013 Two neuromodulation surgeries.
2016 Possover negate Pudendal Neuralgia (no pain elicited on rectal exploration), says problem is more central but MRI- neurography show nothing.
2017 De Bisshop found Oedema/hyperpressure and neurological abnormal response on intrapiriform area, most on sx.
Failed injection blocks.
There are no more updates on the board, but one of the three people operated (a woman) says that she has excellent results. I am in touch with her by email and she speaks highly of the experience. Two other people (men) say that they have not improved. Because of the limited visualization of the surgery, I imagine it is highly random who benefits and doesn't and depends on whether the entrapment is in the place that he can reach. On the other hand, the recovery time seems less terrible and the surgery generally less invasive. So I'd think the overall picture is -- less chance of success (though more than zero), but also less chance for damage or long recovery.
If he were located in the United States such that it would not be an ordeal to go to fly to France and back, I think I would have done this already. As it stands, I am still undecided. I am going to get a botox injection in the left obdurator internus by Dr. Fritz in Baltimore in a couple of weeks to see if that helps.
Good luck with your Botox injection, Winged-Cent, I would be interested to hear how it goes for you.
Best,
Violet
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
Update: no real success from the Botox injection. I've gotten some short-term relief with dry needling (essentially aggressive trigger point acupuncture) from a specialist in Maryland, but unfortunately the effects were not lasting.
So I'm still in the conundrum of whether to bite the bullet and take the disruptive step of flying to France to get the de Bisschop surgery (likely this summer if it happens), or to continue with the fruitless conservative methods. I am neither in agonizing pain nor am I satisfied with my quality of life, which makes the decision hard.
Sorry to hear that Botox didn't work for you. I agree with you that the decision about surgery is very difficult to make. It would be nice if there was a guarantee that you wouldn't get worse but that you still have a chance to improve. I think Dr. de Bisschop uses a pretty conservative approach, right?
Violet
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
Yes, that's right, Violet. De Bisschop is the most conservative of all the methods-- in a couple of words, it appears that he makes a 2 cm para-anal incision, finds the rectal branch of the nerve, hooks it under his finger, follows it to the clamp between the sacrospinous/sacrotuberous ligaments, and removes any adhesions around it manually with his finger. No ligaments are cut, and he uses his "balloon" method to create more space for the digital decompression, it seems.
Just thinking logically, no matter what he says, the decompression must be much less "complete" than the TG approach. But if you win the lottery, and your compression happens to be where he is able to decompress (and my compression is milder than those who have severe pain, suggesting perhaps that it is not getting "smashed" between the ligaments), then you might get it decompressed without the severe pain and recovery period (and risk of getting worse) of the invasive TG method pioneered by Robert and practiced here.
I've never heard of anyone getting worse from the surgery on the French boards, and there are some who got better-- and, of course, many that said that it did nothing for them. Of course, there's always the risk of the nerve getting nicked somehow, or scar tissue formation from the surgery itself, or infection in some random clinic in the south of France -- but it seems like these risks are far less than the other surgeries.
Incidentally, I spoke with Dr. Conway and Dr. Dellon about what they thought. Conway thought it might be worth a shot given my symptoms. Dellon said that it's dangerous because he's "going in blind". But de Bisschop has been doing this same procedure for at least a decade, and nobody has posted on any forum that he's harmed them.
If I could get the De Bisschop in.. say... New Jersey, I would have done it already. But the prospect of going to France and back is intimidating.
Hey, I know what you mean about going to France and back being intimidating. Sometimes it seems surreal that I actually did that. But if it relieves your pain it will be worth every penny and every minute of it. You have to choose the method that you are comfortable with and that makes the most sense for your situation. I hope it goes well for you and that you will have some good news to report back to us.
Take care,
Violet
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
