Health Organization for Pudendal Education

As a 16 year chronic sufferer of extreme PN, I have begun to think it might be related to my exposure to agent orange while in the USMC in Viet-Nam. (I'm also experiencing extreme neuropathy in my lower extremities.)

Has anyone heard of this condition in connection with AO exposure? Any help or advice would be greatly appreciated.

podell

Hi Podell,

Thank you for your service to our country. I'm sorry it has left you with these dreadful neuropathies.

I can't remember for sure if anyone has ever mentioned agent orange as being a cause of their PN . It does make sense as a possible explanation though.

I don't know if something like neurostimulation or intrathecal pain pump would be helpful or not but it might be something to ask your doctor about. Have you already tried drugs like lyrica and cymbalta?

Violet

Thanks, Violet, for your reply. I don't recognize lyrica and cymbalta. Maybe I have taken them under another name. I'll ask. As for treatment, I had a hideously expensive civilian nerve surgery and am currently undergoing nerve ablation of the nerve with the VA.
Thanks for your concern.

Pat

Pat, is the nerve ablation helping at all or did you have the procedure yet? Before having the procedure done, it seems like it would be important to have a nerve block to confirm they are ablating the correct nerve.

Violet

Well, I've had three of them. During the procedure I can feel the nerves stimulated in the correct spots. After each time I think it helps for a bit, then back to the same old thing. The Doc wants to go back up the nerve a little and try it there. Where it comes out of my spine. These are great young UCLA guys and do have some experience with my problem. I have faith in their ability. My wife doesn't. I am going to schedule a consultation to get everything out on the table.

Since they can isolate the spinal nerve roots that cause the pain, maybe something like dorsal root ganglion neurostimulator would be helpful if the other procedure fails. Something to ask your doctors about anyway.

Violet