Health Organization for Pudendal Education

Sorry things haven't gone well Earl, although very glad to hear from you of course. I couldn't imagine that BIlateral perineal botox would have any other effect than exactly what you have described. I just hope the effects wear off soon, especially as you have had no pain relief. Not good!
I had botox into my piriformis muscles which did give me pain relief in that muscle but no nerve pain relief, (due to scar tissue around the nerves which the botox can't have an effect on) so maybe similar in that respect, of course paralysing that muscle (and only one side) didn't have the devastating effects you have encountered.
I'm sure that the botox will wear off and things will get back to normal (your/our 'normal')
I prescribe that you hang around here and don't feel so discouraged, people here will always try and help you through.
Take care,
Helen

Earl,
I am sorry to hear about your situation. I also had a very bad reaction to Botox. I experienced urinary incontinence and terrible terrible pain. It went away eventually after a couple of months. PT did help me recover.

Thank you guys for your encouragement and support! You're the best!
Earl

Earl, my PT found out that the muscles injected relaxed as expected but other muscles took the slack and were spasming to compensate. I cannot emphasize enough how PT helped me recover from Botox.

I know I'm probably jumping off the bridge, so to speak, but after trying everything else I'm scheduled for surgery with Dr Hibner Feb 11. The success rates as with all the other doctors is very bleak but i feel I'm ready to try anything . I do feel he is one of the best out there by hearing from some of you alls stories. I just wish there was more promise of it curing me. Its been so difficult trying to be strong for my children. I can't stand letting them see how down I am with this . Its been impossible to hide everything when I spend so much time in bed and no longer go to work. Pretending I'm handling it OK is becoming almost impossible. Earl

I do wish my diagnosis would have been more thorough with Dr Hibner. I hear Loretta the PT is very good at discerning which nerves are causing the symptoms. I did see Lisa Wadsworth whom is very nice and professional but Dr Hibner did not do a physical exam . it just seems waiting two months for a surgery in an unknown location with unknown symptoms ( to him) other than a few of my own descriptions is like a shot in the dark. What if its a dorsal nerve problem- or lumbar? Or a ton of other possibilities ?
Also has anyone with PN been helped by Neurolumen? Its pain unit of some kind. kbosler@neurolumen.com

Earl,
It looks like, when you go pass the marketing jargon, that it is a combination of a TENS unit and a low power LED infrared unit. I have tried both separately and did not benefit at all. I don't think combining the two would make it any more efficacious.

Hi Earl,
I'm a bit confused about some of the things you've written and hope you can clarify for me:

Earl wrote: I'm scheduled for surgery with Dr Hibner Feb 11.

Earl wrote: I did see Lisa Wadsworth whom is very nice and professional but Dr Hibner did not do a physical exam .

How did you get a surgery date with no exam? Who administered the blocks/botox in November?

Earl wrote:What if its a dorsal nerve problem- or lumbar? Or a ton of other possibilities ?

I can understand your concern. It may be worthwhile to rule these things out or confirm them prior to proceeding with surgery.
Best regards,
Karyn

Yes Karyn that did sound a bit confusing.Dr Hibner did do the Botox and other procedures and Lisa Wadsworth did an exam.I Just Hoped for more confirmation specifically pinpointing where my problem lies. I suppose with this problem we don't get that confidence until they cut . I had heard that the PT makes an exam too and is very good at diagnosing( I forget her name). I incidentally am so ready to get on with surgery. They were kind enough to schedule it knowing that there were some unanswered questions. Over the phone is not as good as in there office though and I won't get to do that until a couple days before surgery.
Earl

Thank you for the clarification, Earl.
I hope you get your questions answered and I wish you the very best!
Kind regards,
Karyn