Puendendal Neuralgia Entrapment Surgery

[Arizonian]

I have both P.N. and I.C. and am seriously considering having the PNE Release surgery. The PN has made my I.C. far worse since I was diagnosed 14 months ago. No treatments have worked at all and I have exhausted all treatments and drugs. I am trying cold laser treatments now with no success.
I would like to communicate with any I.C. patients who have had the Puedendal Neuralgia Entrapment Release surgery to understand how it affected their I.C. Also, I am interested in understanding who your surgeon was, healing process, whether the surgery worked effectively and how you feel now.
I am very seriously considering having this surgery in the next one month as nothing has worked for me but if anyone has any other suggestions, I would be pleased to learn about them.
Thank you.

[LoveMyKidsFour]

Hi There, my name is Amy, I live is South Chandler, AZ

I had the pudendal Neuralgia surgery last August. It did nothing for me, but I am someone who has had all of these problems for five years, the longer you wait to have the surgery, then the odds are worse, so it didn't help me at all, but it did not make anything worse, just did nothing. I was so desperate. Also, I have four children, I am a single mother with no help, and I have carried my baby boy on that left side since the surgery so it may not have had the chance for it to work since it says "no lifting on that area" but what could I do, I have a baby and babies need to be lifted constantly. I have the pudendal neuralgia badly also, I wonder if my severe rectal pain is from that, who knows, there is so much wrong with me, I can't figure where it all starts, or all of it together, just too much for anything to work, maybe if someone just had the pudendal neuralgia, the surgery could work, but for me, with endo, IC, back pain, fibro, PFD, and on and on, I went into it doubting it would help, so I was not highly disappointed. They take a larger razor through the outside of your but cheeck to remove the nerve, entrappment, and then you have this big scar on your but, now that area is always sore, because anywhere I have been cut is sore with my mess.
The surgery, it was not hard, I was fine within a few days, they put a lot of dressing on your but, they put a pain pump right into that nerve that you keep in your hand, it looks like an onion, but it is filled with medicine going right to the nerve, for about five days, then you go back and they just pull it out, no pain, mine came out itself. But, it is not a surgery that is like the blader stretching, you recovery pretty quickly, just a sore butt from what he said "they are taking a large knife to cut your but open"and if you don't mind the scarring, it is rather large. I wished it worked, but I think FOR ME, I had it way to long for it to work, and a baby I have carried non-stop since the surgery.
Please feel free to ask me anything.
Lexiebug1999@yahoo.com
Amy

[Kara29]

My PNE Surgery will be done by Dr. Mark Conway in NH. I was going to wait to have it done until we were done trying to get pregnant but I think I am going to do it sooner than that. When I first met Dr. Conway, he had only done 3 PNE cases. Now he's done over 100 men and women!!!!

Dr. C is my favorite Doctor. He's from Syracuse which is where I live. Small world..........

I'll let you know how the surgery goes. In the meantime there is a whole website with message boards related to people that have PNE and are having the PNE Decompression. I'm sure you will find lots of helpful people who have already had the surgery and can help answer some of your questions.

Here is the link to join the PNE site: http://www.tipna.org/faq/IntroductoryFAQ.htm
http://tipna.org/forum/


The reason I am having it done is that I have that gotta go feeling 24/7 and none of my operations have helped and this is the last one left to try. Will it work? I don't know but I'm willing to throw myself into it to find out.

Kara

[Grammy]

Kara--What did they do to come to a diagnosis of Prudenial nerve entrapment? Where there any specific tests that you had done that are not the usual ones for IC. Best of luck with this latest surgery and please keep us posted as to how you make out. I think most of us probably have some pelvic floor disorder because when something hurts it is just a normal impulse to want to protect it by contracting the area. You have to be one of the bravest ladies I have ever read about. Truly you are an inspiration to us all.

[Kara29]

Grammy,

They diagnosed my PNE via 8 nerve blocks, two of them were Pudendal Nerve Blocks. One was done on the upper part of the Pudendal Nerve and one was done on the lower part of the Pudendal Nerve. These two blocks gave me the MOST relief, especially the upper one which is rare but so am I, unfortunately. I was also diagnosed with an EMG and a phyisical exam by the PNE Specialist.

1. Nerve Blocks
2. EMG
3. Physical Exam by PNE Specialist
4. Past Hystory of rule outs on all other disorders

Thank you for the kind note!!!:smile tee

Kara

[Arizonian]

Kara,
I wish you the very best of luck with your surgery with Dr. Conway. I know he does the vaginal surgery and I wish I still lived in N.E. so I could have it done, also. I also have I.C. and have the "urge to go" 24/7 like you so believe now that I must have the PNER surgery in order to get of this situation.
I live in the S.W. and Dr. Hibner is my doctor. He is wonderful and I am meeting him again next week for the third time to discuss for the final time having the surgery done. I have exhausted all treatments and drugs to no avail. Cold laser therapy and the neurostimulator both did nothing for me.
What iare Dr. Conway's percentages in terms of "cure", improvement, no improvement or made worse?
Thank you.

[Kara29]

I'm not sure what Dr. Conway's percentages are, however...........I still love him and want only him to do the surgery one me when we come to it. I think the men do much better in terms of getting relief from the PNE Decompression.

I'll be sure to ask him when we speak. I am waiting for him to return a call as we speak. I am having surgery in two weeks. They are cutting a nerve and I don't know what it's called but I want to know. Dr. C is VERY informative and always available when I have questions even though another Doctor is doing the surgery. That's what I love about Dr. C. He's so supportive! :smile tee


I'm glad you like your Doctor. That is 50% of the key to getting better.

Kara

[duchesstiger]

I think you are in excellent hands with Doctor Hibner. He is currently one of the only PNE Doctor who is trying to come up with *other* treatments for PNE like botox into the alcock's canal and also the use of a marcaine pump after surgery. He also repairs the ligments with cadaver tissue which has helped with the stability problems that some people experience after surgery. His method (which is the same as Houston's method) allows more visualization of the nerve along its path and he also uses a nasal speculum to see into the alcock's canal to release any entrapments there....no other Doctor does this. He has had a very high success rate according to updates that I have read from people who have had surgery with him. I have spoken to him personally and he is incredibly knowledgable, compassion and eager to continue researching better treatments for this condition...there are definitely advancements to be made in the treatment of this awful problem.

My problem seems to be pelvic floor dysfunction so I may never need his services but if I ever do I will head straight to Arizona! The most important thing is that you find a Doctor you feel comfortable with and who you can trust to do all that is within their power to help you.

Take care and good luck to anyone heading down this path!