Health Organization for Pudendal Education

Thanks for your post lottanerve and just echo what faith and Lernica have said. I too admire your resolve.
Ketamine could make a lot of sense couldn't it, good for you not giving up. I wish you all the best with whatever you decide.
Take care
Helen

A's Mommy wrote:What was entrapping your nerve?

Thank you A's! As I understand it. The nerve follows the pelvic bone and is held in place by a 'sheath' covering while allowing it to slide up and down with the movement of the body. An injured nerve regenerates, but grows in size. Mine had grown to twice the normal diameter, and was squished tightly inside and unable to slide freely. This corresponds exactly with where i was getting the rubbing sensations on the left hand side, which would always precede the onset of a flare up. Dr Aszmann said it was 100% entrapped there and he had never seen a more obvious example. Because of this, he did not proceed any further to examine my perineal nerve, or try and reach closer to the entrance to alcocks canal.

Unfortunately, I am convinced that my perineal nerve is at least part of the problem, even before surgery, and am rather disappointed that it was not at least looked at, when I had specifically asked. Imagine sitting on a bike seat, and because you are so focussed on pedalling that you slide forward until that narrow part at the front is supporting your whole body through the narrow channel of the perineum. Exactly where the perineal nerve travels and innervates. All my pain is there.I can literally feel the nerve itself between my skin and the bony anatomy underneath it, and it is SO sensitive. Just leaves me with a whole heap of 'whatifs' and complete frustration. <sigh>

Sharon, I would like to also thank you for posting on your case even when the news is not so good. I think it is really important that people are able to hear about everything no matter the result. Thank you for sharing your story here with us. I wanted to know how you are doing. I admire your courage. There's always something else to try.

All My Best,

Don

Lottanerve, thank you so much for posting about your experience and recovery. My heart aches for you that you continue to be in pain yet am inspired by your resolve to continue seeking treatment options. Prayers are sent your way for recovery.

What do you propose now PN_down under? What about ketamine, would you try that? I wish there was more help to offer, all I can say is that many have posted that it takes 1 year to 18 months to feel an improvement. Easy to type not easy to live through. I can understand you frustration especially if you had a feeling that your nerve did have more entrapment. I can understand Dr Azmann's approach too however as the pain is always felt distally to any entrapment and yours showed a seemingly conclusive problem area which should have explained the symptoms.
Wishing you well.
Take care,
Helen

HI PN_UNDer,

When did you have the surgery with Professor Aszmann?I had the same issue with him for not reaching the perineal branches as well as the distal Alcock's Canal.He wasn't equipped to reach those areas as yet.Unfortunately,he is now.

You don't you talk to him, and I am sure that he will come with a solution.He is a very considerate man.

Kind Regards,
Ali

Hi Lotanerve,

In view of your failed surgeries with Dr. Dellon,why didn't Dr. Dellon perform a redo Pudendal nerve surgery on you.Maybe,the pain was a referred pain from Pudendal Nerve and not the perineal and dorsal branches.


Secondly,what does Dr. Hibner has to say about the new pain symptoms that you have developed after his PNE surgery.

Regards,
Ali

What strikes me is the fact that our post-op histories match so closely.
My perineal branch was looked at and was fine. The dorsal nerve was also fine towards the alcock's canal. My dorsal nerve was found to be squeezed and flattened against the bone at one spot.
I tried PT 5 months post surgery, worked on my posture, strength etc... but that made no difference either.

Hi Ezer,

I guess those are the questions that both A Lee Dellon and Professor Oskar Aszmann have to answer now.These are real concerns which need to be addressed by both Dr. Dellon and OCA.I am sure that they are more challenging than the partial success stories that Dr. Dellon has on his facebook.


Kind Regards,
Ali

helenlegs 11 wrote:What do you propose now PN_down under? What about ketamine, would you try that?

I have not really thought about it. Australia is VERY far away from OS specialised treatment, and therefore very $$$. I don't really have any other options unfortunately.

helenlegs 11 wrote: I can understand Dr Azmann's approach too however as the pain is always felt distally to any entrapment and yours showed a seemingly conclusive problem area which should have explained the symptoms.

The problem is, I explained that I had pain in the bottom half of my perineum, but he seemed comfortable to treat that as referred pain from the left Dorsal. I don't really get pain in the penis itself just numbness. The pain is at the base of the penis and below.

AliPasha1 wrote:When did you have the surgery with Professor Aszmann?

Late September, and he definately could get to the perineal branch when I saw him, just not with everyone. It depends on how narrow the patients pelvis is apparantly. After finding the entrapment in my dorsal nerve, he decided that moving on to the perineal would be more risk than it was worth. He was/is convinced my dorsal was the issue.

ezer wrote:What strikes me is the fact that our post-op histories match so closely.

Maybe what the docs are thinking are entrapments are not actually entrapments? I am sure the definition of an entrapment vs something totally normal is very subjective when examining small anatomical areas such as these.