Health Organization for Pudendal Education

Hello all--I am new to the group. I have had PNE for 3 years, but haven't had a "normal" pelvis for almost 7years. I have endured 6 pelvic surgeries (starting with childbirth/ level 4 lac), 13 vaginal pudendal blocks, 3 pudendal blocks (Antolak), bilateral decompression surgery, and now 3 post surgical blocks--though my pain has decreased from a steady 8 (on methadone) down to a 3-5 (average without methadone), I still live with 24/7 pain. I am in PT 2/week, fly up to MN for treatments (I love Dr. Antolak), take Keppra, Tramadol (down from methadone!), Lortab (as a rescue), Cymbalta daily---but am just wondering how many other folks like me are out there? My daughter turns 7 November 21--it's been a long, horrible trip, but I had a period of 2 1/2 weeks (2 months ago) with no pain--so, it's "possible." What comes next? Dr. Antolak has now recommended ketamine injections along with the "regular" cocktail of nerve blocks. Does anyone have experience with this procedure?

Thanks!
Sue

Hi Sue,

I have no experience with it myself, but wanted to let you know that Facebook has a PN support group that is made of a lot of patients of Dr. Antolak's. It might be a good resource for you; they are very supportive. You would have to be on Facebook if you're not already, but it's free and simple to join. In its search function, type Pudendal Neuralgia Support and it will take to the link where you can click to join the group.

I'm not trying to turn you away from the forum, but the group is established and well populated, and might be able to give you some answers right now if time is of the essence on your decision, what with travel etc.

Celeste

Hi Sue

I have had some experience with Ketamine post surgery in Nantes by Prof Robert.
I had like you many nerve blocks post op, and then went onto having a 5 day infusion via iv of Ketamine.
It worked brilliantly for the five days but once the iv was removed the pain reappeared again.
The one thing to remember is that Ketamine does have weird and strange side effects, and this is the reason it is only administered in a hospital environment with constant monitoring of blood pressure etc.My reactions to it were feeling like I was floating on clouds....you know that feeling just before you go asleep undert a general anesthetic....this feeling only lasted for a few seconds while the iv was inserted. After that it was like I had a heightened awareness of sounds and movements......my iPod sounded like an orchestra in my head...and every movement like the sheets touching my skin made such a sound ...!!!
I have to say that while I slept a lot I did have the strangest dreams.

Ketamine is designed as an anesthetic ...but it is also used illegally as a street drug....that form is called Special K.

It is well researched to block the pain signals over a period of time.

I hope this has helped you a little.

I do know that the infusions allowed in the US are only allowed to be of several hours' duration, not over days as is done in Europe.

Thanks for this Celeste

There is no reason to not have an infusion in the mornings over several days.
My own infusion was topped up every four hours over a period of five days.
At the same time i also had lidocaine infused directly into the PN regions.

Thanks to you all for your input. Has anyone successfully received longer-term relief post block and post ketamine? Since my bilateral decompression a year ago (Dr. Antolak), my bilateral PNE pain has gotten much better--(but not better enough to stop seeking additional treaments. On the positive side, I was able to quit methadone over last Christmas; the pain continues, but managed now with Keppra, Cymbalta and Tramadol (Lortab as a rescue) with less symptoms. However, the 24/7 pain is still always present.

So, is ketamine really worth a try? The doc thinks that my referral patterns (crossing hemispheres) is a good indication that neural plasticity is a likely cause/culprit of the pain not really ameliorating to a low enough level so I can get on with life.

Anyway--any input, references, etc. would be greatly appreciated. I am wary about taking it after initially reading some of the literature. But, at some point, the unmeliorated pain will cause most of us to choose treatment options not always considered to be "standard."

Thanks!
Sue

Sue

i have already told you my experiences of Ketamine, if Dr A thinks its worth a try i would go for it....you have nothing to lose to be honest and if it helps with the cross talk great...if not like me then nothing ventured at all...so long as your indusurance pays for it I was lucky that my Insurance company paid for this treatment in entirety.

Hello everyone--
Thanks very much for the input--it's nice to know that I am not the only out here in the world--though hate it for everyone else too. So, I did the ketamine (1 time dose/ 1 day) with Antolak in Minnesota. The worst part was surviving the 17 inches of blizzard that covered the ground. So far, the only lasting side effect has been a complete lack of hunger/appetite since (imagine how the diet world would latch on to that as a testimonial)--it was a surreal experience, but quite short in duration. He mentioned the 5 days/epidural combo which is done in France--still trying to wrap my head around that. So, I am trying to figure out if/how to get a trip covered by insurance here in the U.S. I am thankfully getting relief from the blocks (4th post bilateral decompression), so happy that the holidays will be lower on the pain scale.

For those of you from the U.S--does your insurance cover the France experience? If not, what kind of bills/expenses does a 5 day stay run? Just curious--I am so thankful to have amazing insurance, but have been quite intimidated at trying to tackle this as a possible option. I still hope that every trip to see Dr. Antolak is my last... Santa doesn't know what to do with that request.

Thanks again to you all!!!

Sue P, I don't know the protocol that is done in Europe. I can tell you that Dr. Hibner has two options that might be worth some thought and discussing with Dr. Hibner and Dr. Antolek. At St. Josepeh's hospital in Phoenix they do a continuous epidural for 4-5 days which requires a hospital stay. St. Joseph's hospital was recently approved for the Ketamine protocol. One of the only few in the states but most insurance companies will not pay for this protocol because it is controversial plus very expensive. The Ketamine protocol is for individuals with Complex Regional Pain Syndrome (CRPS) old name Reflex Sympathetic Dystrophy (RSD). You are admitted to the ICU, put into a medication induced coma for 5 days while they administer Ketamine IV continuously for 5 days. You are put into a coma because of the potential for severe hallucinations during this protocol. Good luck with your next step.

wow--that is a lot to think about. Antolak mentioned the epidural, not the induced coma. I do understand why--it was a very weird experience for 20 minutes--I can't imagine 5 days of it.
Thanks!