Health Organization for Pudendal Education

I don't know if I'll go on to need surgery but before I ever consider surgery I would first try Neuromodulation. Here is a radio blog from the 'Pelvic messenger' that's of interest.
Dr Peters talk about PN(E) besides other conditions. I found it very interesting.
Here is the link:

http://www.blogtalkradio.com/pelvicmess ... -peters-md

Thanks for the link Laura. I haven't listened to it yet, but will. I was offered a spinal cord stimulator, but turned it down for now. I got a second opinion and that pain doctor said that it is likely since I am young that in 5 years my brain will figure out a way around the pain and it will come back. Some research I have read has lead me to believe this as well, especially if the pain has become centralized in the central nervous system like I believe mine has. Neuronmodulation just tricks the brain into not "feeling" the pain, but the problem remains. To me this is a last resort option after all else has failed.

Laura and others

The great thing about Neuromodulation is that it is "med free" and it is normally used from a physicians point of view as the last resort.
To use it before possible recovering surgery would be pointless; to try the surgery is the first option for any physician as neuromodulation is not designed to be a cure but a sympathetic response from the body to assist in the response from pain signals from the brain.
I have had one implanted for the past 4.5 years, it is my best friend, it is not a cure and does not give me my life back again, but it is a huge help to me so much as that i would not be without it for any money.
There is a huge protocol and doctors know that stimulation is a help but not a miracle, hence the last suggestion in the pain remedy list.

Amanda wrote: The great thing about Neuromodulation is that it is "med free" and it is normally used from a physicians point of view as the last resort.
To use it before possible recovering surgery would be pointless; to try the surgery is the first option for any physician as neuromodulation is not designed to be a cure but a sympathetic response from the body to assist in the response from pain signals from the brain.

I've had two pain doctors tell me to trial a SCS before I go through with TG decompression! They say it's too risky and the outcomes are too poor to be worth it. I understand their point of view. They are pain management doctors...they spend their life taking care of failed surgeries, but I'm only 30 surely I should try surgery before I go down the neuromodulation path. What if I was one of the 80%-100% cured ones? Then I'd be stuck with an implantable device that most likely did not take away my pain and could eventually stop working. Thanks for your input Amanda.

Amanda, the neuromodulator has to be kept in place forever? So it doesn't actually retrain the brain so much as fool it for a while? I'd been thinking it would change the neural pathways so that receptors in the brain would get the right messages again, and then it could be removed.

Faith wrote:I've had two pain doctors tell me to trial a SCS before I go through with TG decompression!

This is what I picked up on in the radioblog link Laura posted. Also he said in the blog that it was removable and that it could be replaced if it went wrong. And somewhere in there I'm sure he said that it made sense to go for minimally invasive surgery before major PNE decompression. But the blog is an hour long and I can't doublecheck that at the moment.

Please take note that having an implanted Neurostimulation system is a life changing decision, there are many medical contraindications to having this system in place such as no MRI, Ultrasound, defib, and many others....it is not an easy option so that is why it is the last of the road options for doctors to choose.
I have documented the contraindications in the Neuromodulation section of the forum and you should read this before you even think about having a Stimulator.
Every medical appointment has to be carefully thought about bearing in mind that you have a stimulator...such as the dentist who cannot use ultrasonic treatment to clean your teeth...having a colonoscopy without diathermy...there are many complications and when you accept these then you are a good candidate to have a stimulator. I recently had a Dexa bone scan which involved having only a scan on my legs and hands as to have one on my spine would not show up anything bearing in mind I had a huge metal stimulator therein.
It is not for the faint hearted...going through any airport is a huge hassle. I carry many lettters and cards proving why I cannot go through the traditional scanners etc...it is not easy when you dont speak the local language!
Having said all of this I would not be without my stimulator even for a day...it helps me so much.

If anyone want sto know more then please email me.

Amanda