Health Organization for Pudendal Education

Hi all,

Just wondering, has anyone asked (Houston team, Hibner, or others) why surgical outcomes aren't better? What do they say?

I'm sure Dellon would say something about the other surgeons not knowing how to best release an entrapped nerve, which is his area of expertise; though, I'm not sure he has the outcomes so far to prove he's any better. But what are other theories/explanations?

If Houston quotes 2/3 of patients get 50% better, then Hibner's modifications (neurowrap, etc.) don't seem to make a difference, as that's his rate of success too.

Another question: are they, or are they not, accessing the WHOLE course of the nerve during surgery?

I think it has a good bit to do with late diagnosis, which is something everyone seems to have to go through unless they are really lucky and have a PN aware doctor or are referred to someone similar,(PT, surgeon) Things are changing but getting the word out there is still so important.
Then there is the pelvic pain domino effect, because of complex pelvic anatomy. That can cause a knock on effect for symptoms making the diagnosis and then treatment more tricky especially as we now know that there are more areas of entrapment than were first thought.
Any surgery can be problematic and especially the rather invasive TG surgery, it always going to be fairly debilitating. Patients need to be aware of that and the fact that nerves can take a good time to heal even given the best circumstances.
I think it is impossible to access the whole nerve from one incision site (please tell me if I'm wrong with that) Because it travels such a torturous route through the pelvis with 3? ? branches not every bit can be accessed. Therefore it is important to get the area of entrapment diagnosed correctly too or the surgical procedure could be 100% waste of time.
Thank goodness for all of those pioneering surgeons who are at least trying to help.

Dr. Hibner has some new data that is not yet published so he will be using the Houston teams number until they are published. Before my surgery in May he told me had 20 patients with Neurowrap and platelelet enriched plasma and at 4 months 17 had improvement. That puts him at 80% of patients with improvements. I do not know how significant the improvements were but me I am glad for the improvements I have thus far. Even if I am never cured I will take any improvements I can get and rejoice .

In Dr. Dellon's publications and his online talk on his website he says that 80% of his patients have improvements, not cure but improvement so that puts Hibner's numbers up there. But, until Hibner publishes his data we must go with the Houston teams numbers just in case as Hibner increases the number of cases the improved rate drops.

nyt wrote:Dr. Hibner has some new data that is not yet published so he will be using the Houston teams number until they are published.

Oh, I didn't realize Dr. Hibner was using Houston's numbers.

I'm so glad you've had improvement, nyt!

Hi Nyt,Suibee and others,

Dr. Hibner has never used the Houston team's numbers.In his publication,he has just used Professor Roger Robert's numbers.

As per my meetings with Dr. Hibner,his stats were 40% cured,30% improvement and the rest 30% he cannot help.

As far as his most significant improvement is concerned,it is the cadaver which he used to repair the Sacrotuberous ligament in order to avoid Pelvic instability.Now Dr. Hibner along with Dr. Conway and and Dr. Antalok are all making an incision in the ST ligament and suturing it back.

They believe that this a very significant step towards the TG surgery because if the patients don't benefit from the surgery,they won't become worse and hence won't develop any pelvic instability.

I believe that the main reason that people don't benefit from the PNE surgeries is the re-entrapment of the Pudendal nerve in scar tissue,not decompressing the perineal and dorsal branches,other peripherial nerve neuropathies which aren't addressed and in some cases the axons of the nerve are damaged and the nerve cannot regenerate .Another factor is the severing of the ligaments and not repairing them which usually causes the sacrum to move from it's axis and causes more issues than before.

Take care,
Ali

Ali, thanks for the correction on my error. I did know it was Dr. Robert's numbers, don't know what I was thinking. Sorry everyone.

Dr. Hibner believes it is the platelet-rich plasma (PRP) that is the key factor in improved outcomes. Nothing to do with suturing the ligaments as he was doing that before he started using PRP so he has different groups to figure out which factors are improving outcomes. Ali, you are correct in that he doesn't want the possibility of a secondary problem from severed ligaments.

Great question, Suzibee and some logical answers from NYT, Helen and Ali.

AliPasha1 wrote:I believe that the main reason that people don't benefit from the PNE surgeries is the re-entrapment of the Pudendal nerve in scar tissue,not decompressing the perineal and dorsal branches,other peripherial nerve neuropathies which aren't addressed and in some cases the axons of the nerve are damaged and the nerve cannot regenrate .Another factor is the severing of the ligaments and not repairing them

Very well said, Ali! There IS a reason why some people don't improve. It's not just "the surgery failed". I think it's very important for surgeons to discuss their surgical findings in detail with their patients, especially the condition of the nerve. If your nerve is damaged beyond repair, was the surgery really a failure? It's my understanding that the purpose of decompression surgery is to free the nerve by whatever is entrapping it. If you're entrapped in other areas not accessable from your chosen surgical approach and achieved minimal improvements - was that surgery a failure?

helenlegs 11 wrote:I think it is impossible to access the whole nerve from one incision site (please tell me if I'm wrong with that) Because it travels such a torturous route through the pelvis with 3? ?

Maybe Ali can elaborate on this, but no - you can't access the entire nerve and all of it's branches with one surgery.

helenlegs 11 wrote:Then there is the pelvic pain domino effect, because of complex pelvic anatomy.

Correct, Helen. The majority of us have other issues because of this. Whether it be other nerve involvement, muscularskeletal problems, or the myofacial response from the bodys natural defense against severe pain. When this occurs, it has the potential to shift your bones out of place and cause other damages.

nyt wrote:Before my surgery in May he told me had 20 patients with Neurowrap and platelelet enriched plasma and at 4 months 17 had improvement.

I'm very interested to read this study. It must have been very difficult to gather the data with all of the variations involved. I had bilateral TG surgery with no platelet rich plasma, no pain pump and no wound vac. I do plan on writing an update, but suffice to say, I have had tremendous improvements since surgery.

Just a blurb about the Neurowrap: Dr. Hibner is not the only surgeon using it. To the best of my knowledge, all USA PNE surgeons are using it, with the exception of Houston. Additionally, the neurowrap is used to help prevent scar tissue from the surgery. It dissolves within 2 weeks.

nyt wrote:I do not know how significant the improvements were but me I am glad for the improvements I have thus far. Even if I am never cured I will take any improvements I can get and rejoice .

I feel the same way, NYT! It sounds as if your surgery with Dr. Hibner was indeed a success, by addressing what the TG surgery could access.

You can see Hibner's outcomes here http://www.stjosephs-phx.org/Medical_Se ... lth/196316 It's the same as what Ali said except he does said 1% get worse from decompression

Hi Susibee,

I would like to add that Dr. Dellon is quite knowledgable of other Peripherial Nerves in the Pelvis,hands and feet.Dr. Dellon does enjoy an advantage over other PNE doctors how to handle and decompress other Peripherial nerves in the Pelvic area,if there is a pathology other than the Pudendal Nerve.

The only issue right now with his PNE surgery is that he is divding of the ST ligament which can potentially lead to Pelvic instability and that he doesn't take insurance and most of us don't have the means to afford him.

I sincerely believe that other PNE surgeons should start working on other neuropathies in the Pelvis or work in conjuction with other plastic surgeons/neurosurgeons who are familiar with other peripheral Nerve pathologies.

However,having said that,there are no 100% cures reported from Dr. Dellon's patients so far.If there are any please don't hesitate to post your succesful outcomes including the time it took to fully recover from the PNE surgery.

Regards,
Ali

Maybe because they are not getting MRI guided nerve blocks before and after surgery along with proper pelvic floor physical therapy.