Health Organization for Pudendal Education

Paulette -

I traveled from Ohio to Manhattan to have the Potter MRI last September. My parents drove me and I laid in the back of their vehicle. It wasnt all that bad because we live only 7 hours away and we would stop every couple hours so that I could stand up and stretch. The weather was nice and warm at that time so it was actually a very pleasant road trip..

That said, I concur with Meliora and I feel that deciding on the Potter MRI is a unique to the individual. I have absolutely no idea how I became a PN'er, so I was basically trying everything that I could to figure out what was going on inside me. My MRI did not show any specific areas of entrapment, however Dr Potter did note that I had an asymmetrical sacrotuberous ligament as well as varices in the pelvis. My doctor and I feel that those two things COULD show that the nerve is being impinged somehow for variuos reasons that I have discussed in other threads.. The point is that only you can decide if that test is right for you. If I had a chance to go back in time I probably would NOT travel for that MRI. Hindsight is 20/20 However in your case, with such well known etiology, I might look at it differently.

As far as the SCS implant is concerned,, my doctors tried the exact same approach that you mentioned with one lead on each side of the spine, and one injected cuadally. Unfortunately for me, the caudal lead caused me alot of pain - I remember my left hip literally jumping off the table when they inserted that lead. I am not trying to scare you! Everyone is different and your response to the procedure may be completely opposite of mine. I ended up with only the 2 epidural leads flanking the spine, but they were able to pull them down a little bit and get good coverage. So, I guess what you can take from this is that you dont need to be discouraed if the procedure doesnt go exactly as planned. When we got done with the procedure, I had tears in my eyes because I honestly looked at it as a failure because I was so pumped up that it would get me better coverage of the sacral roots (they told me during the procedure that they were pulling the caudal lead). In fact, it wasnt until 5 days into the trial that I started seeing benefit from the implant. My Boston Scientific reps were able to subsequently dial in the programming (it took several visits to the doctors office) based on the 2 lead set up.

Paulette, are you going to trial the Boston Scientific Spectra? I did alot of research on it and it is by far the most technologically advanced unit money can buy at this point in time. No other system has 32 contact leads... I know that Hulk Hogan, the legendary wrestler just got the Spectra as well!

Good luck with whatecer you decide to do, and feel free to PM me if you need additional info! Take care-

Matt

Rosemary wrote:

Meliora wrote: There should be a PN song distraction page

!

Oooooooooooooooo yes please - would the moderators allow a Song distraction thread in the Social/Fun section - would links to Utube music be allowed ?

Rosemary x

I'm sure the Mods would be fine with it.

Violet

Thanks Matt and Meliora.. I am in a terrible pain flare and my father passed away today. Don't know if I can make it to NY. Will pm you later Matt.

So sorry to her the sad news about your father Paulette. Please know that we will be thinking about you at this difficult time.
Lots of love and hugs,
Helen

Paulette, I am so sorry for the loss of your father. I hope comfort and peace will be with you. Also, I hate to hear you are hurting so badly.

Hugs indeed,
Meliora

I echo everyone else in saying I am very sorry to here that your father passed... These are tough times for you, hang in there and be strong. Things will get better again Paulette.

Matt

Paulette -
Forgot to add -
Feel free to PM me anytime. Take care

Matt

Thanks to everyone for the kind words. I have been reading about Dr.Ken Peters at Beaumont Univ. He places the lead on the pudendal nerve and has found his patients prefer this type of stimulation. I just don't know if it is wise to have a stimulator implanted so far from home. It makes adjustments more difficult.

Paulette -

Thanks for posting the info regarding this doctor in Michigan doing the PNS.. I am having the SCS implanted on May 3rd 2013 so it really got me thinking. I dont like to leave any stone unturned, so I did some internet google research and found the abstract that studied PNS by this doctor.

I was able to communicate with my doctor, and he gave me some excellent feedback regarding this. He even sought the opinion of one of his colleagues who is a Chairperson of the pelvic pain division at UH Medical Center (Ahuja) in Cleveland Ohio. According to my doctors, there are a number of considerations that need to be made if a person is to undergo this type of treatment. The main considerations being :

1) The study reported only 2 of the 89 patients had pudendal pain. The main focus here was the treatment of Incontinence (not pain). I have more pain than I do incontinence so for ME this treatment doesnt seem to address pain relief benefits.. Also, there were reports of urethral contractions using this technique (sounds kind of painful)..
2) The Neuromudulation Society (as of Feb 2013) did a review and they consider this technology and approach as still in development.
3) The data for this study was collected between 2003-2008.. That leaves me wondering that if this was a proven technique it would be more well studied and more info would be available on the subject. There isnt much in the way of more research on this since then so that is very concerning to me!
4)This treatment is NOT covered by major health insurance (peripheral nerve stimulation is considered "experimental")..
5) The way that the lead is placed to stimulate the Pudendal nerve is not good "esthetically", meaning that it could be uncomfortable for an active person.

This is only feedback that I got from my doctors, and I am not trying to dissuade you in any way. Unfortunately with this condition, one must weigh out all the risks and rewards of a number of "off-label" treatments. For example, Cymbalta is used for the treatment of PN but its not listed on the label.. But I can tell you first hand that it works! ESWT is another treatment that comes to mind that seems to have benefit but is still too new to be regarded by mainstream medicine as a proven technique.. The list goes on and on..


At any rate, I hope this info helps and if you do decide to move forward with PNS please update us on how it works for you.

All the best -

Matt

Hi Matt,

Wishing you the best of luck for today, let us know how it all goes, fingers crossed.

Regards Molly