Health Organization for Pudendal Education

Good luck w. your appointment tomorrow Paul (bring a book for the wait!). I'm actually in to see him on Wed. (have decided to head down & see Dellon, so just need Gordon to sign off on the OHIP paperwork for me).

And yeah, Nelly's great too. I was seeing her before I started going to see Carolyn actually.

Hope it works out w. your appeal!
Take care, PS

I see Dr. Gordon on Tuesday so he's seeing the three of us this week! PaulSa, please let us know how you plan to proceed now that you have your Potter MRI.

Sorry to make a topic inappropriate post, but realizing that PaulSa and Pelvis Stressly are from Canada, I just wanted to ask if either have had nerve blocks from Dr. Peng at Toronto Western? I have vain hopes that a steroid/heparin injection might be effective at settling my level 3/10 unilateral scrotal pain/allodynia which developed subsequent to years as an avid cyclist, however my understanding is that Dr. Peng can only do the injections at the level of the ischial spine, and not into Alcock's canal? My fear is that the block could permanently take my manageable (no drugs and I can get through the day) but persistent pain/allodynia to something more severe, however seeing as the general prognosis for untreated neuropathies is very unfavorable, I wonder if attempting a non-invasive treatment like a nerve block while the pain levels are still low is a reasonable approach. I've had this damned problem for a year now, and while my pain levels aren't getting worse, I've had to put a lot of my life on hold to achieve that.

Thanks for any comments/advice.

mmr100 wrote:I just wanted to ask if either have had nerve blocks from Dr. Peng at Toronto Western?

I've had 3 blocks w. Dr. Peng, mmr100. Mine were all at the level of the ischial spine, but based on info in the following link, it appears he can also access Alcock's canal... http://www.canadianpainsociety.ca/congr ... Gordon.pdf (scroll approx. 2/3rds of the way down & there's a page on Peng & nerve blocks..."Transgluteal can be assisted by imaging and permits blockade at the ischial spine or in Alcock's canal") He won't do a block at the level of the dorsal branch though, as he feels the area's too tight to safely do the injection.

He's at philip.peng@uhn.on.ca if you want to ask him anything directly.

Good luck, PS.

Does anyone know if Dr. Hibner is willing to view a 3T MRI even if he doesn't take a person's insurance????

mmr100 wrote: I wonder if attempting a non-invasive treatment like a nerve block while the pain levels are still low is a reasonable approach.

Just to clarify, the nerve block is not "non-invasive" as it involves very deep punctures into the pelvis. That's why many people have had subsequent problems with them. If in doubt about the degree of invasiveness, there is a disturbing video circulating on the internet showing the procedure being done on a child. After seeing that video I resolved not to do any blocks unless absolutely necessary (e.g. to comply with Dr. Hibner's pre-op protocol).

Good luck with whatever you do, MMR100.

Lernica, do you have a link to the nerve block video? I am in agreement with you on nerve blocks -- I have heard too many stories of people getting worse from them.

Search "bloc pudendal bel air" on YouTube. Very disturbing. Why a child would be subjected to the procedure is beyond me.

I didn't watch the video, but wanted to say that the CT-guided blocks that pudendal sufferers are offered are done from the top of the buttocks.

No one knows why the blocks can make some people feel worse. There are lots of theories, of course. I got worse from an unguided block through the vagina, but it was also done with a steroid that is not commonly used for these...so who knows? Nothing but questions--was it the medication, did the nerve get harmed, was it the approach, was it the nature of my entrapment...and so on.

The one thing I do know for sure is that blocks are not something to do casually, and a person should probably aim to have the minimum number of them if for no other reason than to manage the amount of radiation they get from a CT scan, which adds up over time. I think this is one reason to research and pick your surgeon up front, and get only the blocks that he requires to make sure that surgery is necessary, rather than to hope to avoid surgery and drift from doctor to doctor having blocks. I completely understand that the great hope is that something less than surgery will work (BTDT). I just think we're to a place in collective knowledge where we don't need to encourage people that a better block is out there if they just keep looking. Hope this helps.

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Re: MRI results from Dr. Potter visit

Postby Pelvis Stressly » Tue Jun 07, 2011 9:08 am
Just wanted to add a few points PaulSa...

1.) There's no existing evidence (that I know of anyway) that varices can cause compression of the PN. Potter saw similar varices in my scan & recommended embolization, but when I checked in on the subject w. my usual team of experts I got the following responses...

"There is no case series about the treatment of varices and pudendal neuropathies." Dr. Beco (PN doc)

"Veins are soft and do not compress nerves. Indeed, varicosities often develop when the nerve is decompresssed." Dr. Antolak (PN doc)

"There is no documentation that I have read that suggest that varices can press on the pudendal nerve." Carolyn Vandyken (pelvic floor PT)

"Pelvic floor varices might result in pain, but the type of pain has usually been described as a dull achy pain." Dr. Jarvi (urologist)

"Veins are generally low pressure and cause symptoms from compression in rare circumstances." Dr. Beecroft (interventional radiologist)

Needless to say, I decided against the procedure.
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what great information!!!!

I just had "significant" vein swelling as a finding on my MRN, and will soon be discussing possible treatment options based on the results.

If Filler recommends treatment for the veins, I will be a little skeptical now.

Guessing he will more likely recommend treatment for the PN entrapment, whatever that might be (some procedure, injection, PT, etc)...hopefully not surgery!