Health Organization for Pudendal Education

Gabriel81 wrote:
Thanks for the updates, I remember that De Bisshop told me via mail "There is never conflict with ligament"...

I'm not sure the context in which he said this or what he means. Is he saying PNE due to ligament entrapment doesn't exist?

Violet

I think that is what he says, essentially, which seems either absurd or at the very least entirely contrary to what literally everyone other doctor thinks, including Dr. Beco who at least as of several years ago was doing a modified version of the transperineal approach where he does cut the ligaments with a resectoscope.

At the same time, even though I don't buy the overall theory, I still wonder whether his surgery could help me. On the one hand, my nerve symptoms are not as severe as those of many others and are not "sharp", therefore to me suggesting the absence of a ligamentary entrapment. On the other, his tests appeared to show entrapment, and years of pelvic PT and other non-invasive treatments (including FAI hip surgery) have not made a real dent in the symptoms, and I still suffer from one-sided pain and loss of sensation even as the PTs say that my pelvic muscles are no longer tight.

I wonder if this surgery might still be a good option for someone with milder symptoms who has failed all the conservative treatments but whose symptoms nevertheless do not warrant a highly invasive intervention like the TG approach or Dellon's surgeries.

Violet, as you are long and wise on this forum, do you have any lay opinion as to whether such a surgery (involving finger-based opening of the infrapiriformis space and Alcock's Canal) could have long-lasting effects and if so, what the mechanism would be? Obviously this is presuming that the compression of the nerve is indeed in one of these spaces and not in the "ligament clamp" area.

Hello Gabriel,

I just randomly came across your first post from a couple of years ago while I was searching something in Google. Have you ever found a doctor who understands that there may be a connection to your L5S1 injury?
Your symptoms sure sound just like a couple of patients in the US who had something happening at L5S1 that put pressure on their sacral nerve. I've been seeing Dr. Goldstein in San Diego, California (who, incidentally, sees patients from all over the world for pain issues like your and mine). He's been working in recent years with a spine doctor in San Diego who has performed some minimally invasive surgeries to correct their L5S1 issues (some have a herniated disc, some disc bulges...) and their symptoms have either completely disappeared or they are dramatically improved.
I can tell you that they have treated 8 patients for this..
Two men had pain with arousal, 4 had PGAD (persistent genital arousal disorder), one had itching, which I don't have more specifics about, and one had anorgasmia.
I talked to one female patient who had pudendal 'like' symptoms such as labia pain, pain with sitting, rectal pain, and groin pain, also internal vaginal pain on one side, and PGAD. After her surgery at L4L5 (which was also causing impingement of the sacral nerve), she's almost completely healed. It's only been 10 days since her surgery.

I had to login and share this information with you after reading that first post and seeing the comment about L5S1 combined with your symptoms.
I sincerely hope this is helpful.

winged_cent wrote:
Violet, as you are long and wise on this forum, do you have any lay opinion as to whether such a surgery (involving finger-based opening of the infrapiriformis space and Alcock's Canal) could have long-lasting effects and if so, what the mechanism would be? Obviously this is presuming that the compression of the nerve is indeed in one of these spaces and not in the "ligament clamp" area.

In the past PNE surgeons often used their finger to release any entrapment in Alcock's canal -- freeing up the nerve if it is encased in fascia, but they also typically released the nerve at the ligamental grip in the same surgery. So the release with the finger in Alcock's canal isn't really anything new. I don't know how effective it is if the release is done just at Alcock's canal because entrapment between the ligaments has historically been considered the most common site of entrapment. I guess my question would be, how does Dr. de Bisshop determine the exact site of entrapment, and that there is no entrapment at the ligaments?

I guess your decision on which type of surgery to pursue could take into account the possibility that if the transperineal approach as done by de Bisshop doesn't bring you relief, are you willing to try a second surgery later to release the nerve at the ligamental grip?

Violet

michellek wrote:Hello Gabriel,

I just randomly came across your first post from a couple of years ago while I was searching something in Google. Have you ever found a doctor who understands that there may be a connection to your L5S1 injury?
Your symptoms sure sound just like a couple of patients in the US who had something happening at L5S1 that put pressure on their sacral nerve. I've been seeing Dr. Goldstein in San Diego, California (who, incidentally, sees patients from all over the world for pain issues like your and mine). He's been working in recent years with a spine doctor in San Diego who has performed some minimally invasive surgeries to correct their L5S1 issues (some have a herniated disc, some disc bulges...) and their symptoms have either completely disappeared or they are dramatically improved.
I can tell you that they have treated 8 patients for this..
Two men had pain with arousal, 4 had PGAD (persistent genital arousal disorder), one had itching, which I don't have more specifics about, and one had anorgasmia.
I talked to one female patient who had pudendal 'like' symptoms such as labia pain, pain with sitting, rectal pain, and groin pain, also internal vaginal pain on one side, and PGAD. After her surgery at L4L5 (which was also causing impingement of the sacral nerve), she's almost completely healed. It's only been 10 days since her surgery.

I had to login and share this information with you after reading that first post and seeing the comment about L5S1 combined with your symptoms.
I sincerely hope this is helpful.

Michelle, I am fascinated by your post because one of the trickiest parts of PNE in my view is to determine if there is a problem with the peripheral nerve vs a spinal radiculopathy. Most PNE docs recommend a lumbosacrl MRI to rule out a likely sacral nerve root impingement before even considering PNE surgery. I'm just wondering what criteria they are using to decide who would be a good candidate for sacral nerve root release. I would like to copy your post and start a new topic in a different thread on this subject is that's OK with you.

Violet

Michelle,

Thank you for your helpful post. I'd be interested in learning more about this as well. Would you mind also sharing the spine surgeon's name and your doctor's full name?

Many thanks,
April

Hello all,

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.

Thanks, Michelle!

Thanks for the info, Michelle. I split off part of this topic to the following link in case anyone wants to discuss sacral root impingement vs peripheral nerve impingement.

http://www.pudendalhope.info/forum/view ... =48&t=8176

Violet

Violet M wrote:

Gabriel81 wrote:
Thanks for the updates, I remember that De Bisshop told me via mail "There is never conflict with ligament"...

I'm not sure the context in which he said this or what he means. Is he saying PNE due to ligament entrapment doesn't exist?

Violet

The mail exchange was this:

" I:

Dear dr. De Bisshop, I had no improvements after one month after second injections.

Before considering surgical option I whant take time to evaluate, I kindly ask you to answer to this important questions:

1) In my situation (intrapiriform oedema/hyperpressure, ecc.) you will use Trans-ischio-rectal fossa approach with balloon probe sparing the ligaments or it is possible that a ligament cut will be necessary?

2) It is possible that my nerve 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,

I use perineal approach usine a balloon probe
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 )

The pn dysfonction is due at the entrapment

Sincerly"

michellek wrote:Hello Gabriel,

I just randomly came across your first post from a couple of years ago while I was searching something in Google. Have you ever found a doctor who understands that there may be a connection to your L5S1 injury?
Your symptoms sure sound just like a couple of patients in the US who had something happening at L5S1 that put pressure on their sacral nerve. I've been seeing Dr. Goldstein in San Diego, California (who, incidentally, sees patients from all over the world for pain issues like your and mine). He's been working in recent years with a spine doctor in San Diego who has performed some minimally invasive surgeries to correct their L5S1 issues (some have a herniated disc, some disc bulges...) and their symptoms have either completely disappeared or they are dramatically improved.
I can tell you that they have treated 8 patients for this..
Two men had pain with arousal, 4 had PGAD (persistent genital arousal disorder), one had itching, which I don't have more specifics about, and one had anorgasmia.
I talked to one female patient who had pudendal 'like' symptoms such as labia pain, pain with sitting, rectal pain, and groin pain, also internal vaginal pain on one side, and PGAD. After her surgery at L4L5 (which was also causing impingement of the sacral nerve), she's almost completely healed. It's only been 10 days since her surgery.

I had to login and share this information with you after reading that first post and seeing the comment about L5S1 combined with your symptoms.
I sincerely hope this is helpful.

I went to De Bisshop exactly for this reason, He know well the L5-S1 link to pudendal syntoms (http://www.perineology.com/files/e2b.htm) but he told me after the routine exams (staged sacral reflex and pelvic ultrasounds) that he don't think it can be the syntomps explaination in my case.