Health Organization for Pudendal Education

There are many U.S. doctors doing implants for the clinical trial I am in - and it's free.

Half get the new device, as I did, and half get an approved Medtronic device.

http://www.accuratestudy.com/The_Axium_System.htm

http://www.spinalmodulation.com/patient ... imulation/

My results haven't been good, but I am a tough case. I have had several nerves cut. There has been much success.

During my 6 day trial I didn't get any of my typical 8, 9, 10 near-daily pain flares. Due to infection concerns, new leads have to be placed after the trial period, when you have leads/wires sticking out of you back and going to an external device. For my permanent implant it was hard to find the same spots for the leads.

Hi Jon-

My doctor who is know for pudendal neurolgia mentioned this. However, he shared with me unless a patient is experiencing incontence, that most insurance would not cover. I would be interested in learning more about this trial as my specialist has already suggested an implant.

-David

The clinical trial is completely free, even if you are randomized into the arm of the trial where you get the fully approved Medtronic stimulator being used as a comparator.

I'm in a clinical trial for a Dorsal Root Ganglion nerve stimulator, the Axium. The doctor also agreed to put a lead in the S2 area where it enters the plexus to stimulate the pudendal nerve - which it does quite well. It's very uncomfortable. I had to have revision surgery because the lead put in during the initial implant moved. During the revision surgery, my doc could not find the same spot where the lead was placed in the trial. After 30 minutes, he got it very close and stopped there. Now I have this awful butt pucker when I turn the lead on. I see why these devices are used for incontinence

Of the 4 leads, the one over S2 is the only one that is still providing any therapy I can feel. And if it helps at all, it's not much. My pain doc wants to explant the device. I'm about at that point myself. My 9th surgery in 5 years. Great.

Results may vary. They are helping a guy whose ilioinguinal nerve was "nicked"during hernia surgery. The guy should just have that nerve cut.

I know someone who is having great results with a neurostimulator for ilioinguinal neuropathy. Sorry the neurostim isn't working so well for you, Jon. What's the next step for you?

Violet

Jon-

Any updates?

Sorry so long getting back. Pretty discouraged. I had the stimulator removed. It seemed like when the permanent leads were put in there was no benefit at all, just irritation.

Sorry it didn't work out for you Jon. Do you have any idea what you might plan to do next?

Violet