Pudendal Nerve MODULATION (for starters or last resort?)

[Len]

Hi,

I just met with a urogynecologist pelvic floor surgeon (also the director of the division of urogynecology at one of the largest hospitals here in Israel). First dr I met in Israel who has real PN knowledge.

The doctor/surgeon strongly recommended I do 'Pudendal Nerve Modulation' asap. (He is the only one in the country to do this.)

The doctor said to google it and I should find information... but I'm not finding much. There are a few things similar, like what else is posted on this topic, but not 'modulation.' In one place I read a single sentence that modulation has been replaced by something better/newer, but that is all I have seen. Or is it the same thing?

It's the same as a pacemaker but attached to the end of the p

udendal nerve. There are 2 steps. The first step is a wire attached by the nerve connected to a box worn on the outside of the body. After a few week trial period if there is pain relief then the box is implanted inside the body and life is happily ever after.

Both procedures are done under local anesthetic btw.

The doctor said it is successful 70% of the time in 5 years he has been doing this procedure. (But I question this because if this were true I think I would of heard of it more.)

Has anybody newly diagnosed been immediately give this option a try? Or to the veterans, is this a last measure try?

I don't like the idea of having something implanted in my body at all, but I love the idea of pain-relief. But still not too optimistic....

I am thinking this is a pretty drastic 'band-aid' to start out with. Surgery is of course drastic too, but it is leading to a (hopefully) more permanent solution at some point - but I guess nobody nobody knows for sure.

The cost is also about $25,000 - but I would assume in America it would be 4 times that amount!

Of course as soon as we left his office I thought of a lot more questions....but need to make an appointment at his clinic so will ask then (will make a list).

Would love to know if anyone has experience and/or knowledge of this.

Thanks.

[carolynm]

A facebook site for PN exists and there are a few who have tried the neurostimulators, but no one seems to get good pain coverage in the pelvis. You can search fb for "pudendal neuralgia hope" and ask there.

Cm

[Amanda]

Hi Len the following link is to my story as I am a veteran of PNE and have a Neurostimulator for the past 4.5 years. I hope it will help you somewhat.

http://www.pudendalhope.info/forum/view ... ?f=33&t=73

Lens Quotes:

The doctor said to google it and I should find information... but I'm not finding much. There are a few things similar, like what else is posted on this topic, but not 'modulation.' In one place I read a single sentence that modulation has been replaced by something better/newer, but that is all I have seen. Or is it the same thing?

It's the same as a pacemaker but attached to the end of the p

udendal nerve. There are 2 steps. The first step is a wire attached by the nerve connected to a box worn on the outside of the body. After a few week trial period if there is pain relief then the box is implanted inside the body and life is happily ever after.

Has anybody newly diagnosed been immediately give this option a try? Or to the veterans, is this a last measure try?

I don't like the idea of having something implanted in my body at all, but I love the idea of pain-relief. But still not too optimistic....

I am thinking this is a pretty drastic 'band-aid' to start out with. Surgery is of course drastic too, but it is leading to a (hopefully) more permanent solution at some point - but I guess nobody nobody knows for sure.

The cost is also about $25,000 - but I would assume in America it would be 4 times that amount!

Of course as soon as we left his office I thought of a lot more questions....but need to make an appointment at his clinic so will ask then (will make a list).

Yes the cost of stimulator / modululator is a lot of money but it is not a change of life situation, it is a huge help however.
The risks and living situations with having a foreign body in your body are life changing and not to be simplified...but it is liveable with!
The cost in the European zone is approx £25K and is recognised as being acceptable by most insurance companies as being a lesser charge than having a patient on long term medications/hospitalisations etc.

To try a stimulator before surgery is not well known as the nerves may be trapped and to ignore this entrapment may render the stimulation exercise futile.
The normal process is to go through the PN surgery and if that fails then a stimulator is tried as a last process to provide pain relief...the final process normally is to try a pain pump with medication relief contained inside the pump which is implanted withint the patient.
Every pain doctor has their own criteria to follow and that has to be respected by the patient.

[Luciane]

Hi Len,
What's the name of the doctor?
I live in Israel and looking for help.
Thanks, very very much