Health Organization for Pudendal Education

HI PS and all

I am 10 wks out and hitting hurdles as the nerve comes alive.

Lots of tingling/pinching/burning, you name it pain. I am better than before the surgery, but a long way to go.

The intraoperative pics Aszmann gave me show a mess of scar tissue around the nerve and perineal branches but the nerve itself looks swollen in the middle. So--- guess it's inflamed which is how it feels right now!

I will soon start treatment hopefully w/ Ketamine for the CRPS I've unfortunately developed

Take care

Long road --- want it to end

PaulSa wrote:I'm glad the source of your problem/pain was found

Problem is, I'm not convinced yet that it was. I don't doubt that Dellon found what he did, but I'm not sure yet that the presence of said scar tissue necessarily implies it was the cause of my problems (in the same way that, just b/c Potter seems to be turning up scar tissue in almost everybody's MRIs, I wouldn't say we're sure yet that that necessarily means that it's always problematic scar tissue). Really, I won't be convinced until I see some actual improvements in symptoms (or even just a return to where I was pre-op at this point! Pretty disheartening that things have gotten noticeably worse so far).

My main fear is that this has actually been a muscle tension/anxiety problem all along (a la "A Headache in the Pelvis"), rather than anything neural at all. And if so, then what were potentially already chronically tight ischiocavernosus and bulbospongiosus muscles may have tightened up even more as a natural reaction to the trauma of surgery in the area (thus further preventing adequate blood flow).

Thing is, I really felt I had exhausted the whole 'chronic tension' angle before finally opting for surgery (extensive physio, psychotherapy, anti-anxiety meds, yoga, meditation, etc.). Anyway, it's all speculation at this point...all I really know is that blood flow is worse so far (feels like walking around w. permanent, severe frostbite to the penis...not pleasant to say the least)! I'm just focussing on staying as relaxed as I can given the circumstances & waiting to see what unfolds in the weeks & months to come (hopefully it turns out the blood flow is actually being impeded by a tight penile fascia, which should relax as the nerve function theoretically returns...this was my other theory as to what was causing everything, if it was neural rather than muscular).

Hope things went well w. Dr. Beco, PaulSa. Did OHIP end up covering that for you?

A's Mommy wrote:Long road --- want it to end

I'll drink to that!

Hope the Ketamine brings some relief A's M.

PS

How do you maintain such a good attitude????

Do you EVER have breakdowns, LOL?!

You've been on here for years, and always seem so levelheaded. You've done so much sufficient research and made your surgical move.

Did you have the numb feeling before surgery or just pain??? Sometimes I wish I was numb....!

A's Mommy wrote:How do you maintain such a good attitude????

Meditation. Alllll mindful meditation! I'm not particularly religious, but I thank whatever force it was that sent me to a Buddhist meditation centre close to my place years before all this PNE stuff started. Not sure how I'd handle this stuff if I hadn't learned those skills (even w. them, believe me, I still have many a panicked, late-night, solitary freak-out session!!). But real meditation is actually all about that stuff...instead of doing whatever it takes to escape those 'negative' emotions and pain, it teaches you to do the opposite & actually move towards them & embrace them as part of being a complete human. Hard to sum up in a nutshell, but I really recommend this book if you're at all interested... http://www.amazon.com/When-Things-Fall- ... 1570623449 (has helped me immeasurably)

A's Mommy wrote:Did you have the numb feeling before surgery or just pain???

The only time I ever really had numbness was the first few days after the surgery (think it was just the residual numbing agent he used during the operation wearing off). Now it's more pain, but nothing excruciating...sharper chafing at the tip of my penis, and duller, muscle ache at the spot of the incision itself (ischiocavernosus muscle I think), which I'm hoping will subside as the wound heals.

Keep your head up A's M, you can do it!!

Hi, I asked Dellon if he was going to mention PNE at the conference 2 days ago, and he said he planned to and had a presentation, but that the Peripheral Nerve Conference would not allow him to present it. Makes me upset with the whole Peripheral Nerve Organization that they would not allow him to present it. I wonder if they will even mention the Pudendal Nerve there at all ? Everybody definitely sign Jessica's petition and express their needs for this organization to focus on the Pudendal Nerve because they need to, since PN is extremely common, but misdiagnosed as IC and Chronic Non-Bacterial Prostatitis, Chronic Pelvic Pain Syndrome among other names.
Shawn-

Hi Shawn,

It has come to my attention that Dr. Dellon is stating that he nerwe presented anything on Pudenal Nerve at the ASPN(Peipherial Nerve Society) and nor was it even rejected by ASPN as you stated in your above Post.Can you clarify what's going on?


Thanks,
Ali