Health Organization for Pudendal Education

hi
i am new to this board but really need some advice quickly, i was diagnosed with pudendal problems 4 years ago, it is quite severe and is mainly on the left hand side, i havent been able to sit for all this time as it causes pain when sitting which always gets worse after a couple of hours, i have had nerve blocks that only lasted a few hours of relief, decompression surgery 2 years ago and am on various med including ami and pregablin, i also had a spinal cord trim trial which was a disaster mainly because the doctor who did it hadnt done one before for pudendal pain and he really hadnt got any idea what to do.
i have recently found a new doctor who suggested a sacral nerve stim and i have had the trial done i am on my second week of the trial now, it has really helped for me to be able to sit, but has been a difficult trial as after having it done i had a major flare which is still continuning, i did mention it to my doc and he said it could happen as he had been poking around and irritated it, but my problem is, is it just a flare that will calm down or it is something to do with the stimulation, it isnt on high, i have it so i can just feel it, but i am so worried, the doctor might not go ahead with the permanent implant or that if i do have the implant i am always going to be in a flare, can anyone help

margaret

Thanks for the post.

Keep us posted on changes.

well they have decided not to offer me the permanent implant as it seemed to aggrivate the nerve, a pain pump was mentioned a few months ago but when i brought this up with the consultant after the trial of the sns i was told there is no funding and yet it is stated as one of treatments they can offer you on the hospitals website, i am really confused and upset that i am not going to be offered anything else

Man I was hoping it was gonna work cause that is where I'm at. Had PNE for over 30 years before diag. I had Hibner do surgery. I am looking for something to stop the pain cause my life consists of laying in bed or on couch. I can't even stand anymore. Hibner said my ligament had cut down into the nerve and he couldn't get it out so he did his best but there was so much scar tissue he had to cut the lig. in two and piece it back together. I'd love to hear what your next plan is.

well i am going back to my original neuro-surgeon as he said if the trial didnt work i had to go back and see him, i am waiting for an appointment at the moment, i am in the uk, so on the nhs might take a couple of months to get an appointment, you are lucky in the states as you seem to get all the possible treatments that work without any trouble, i do also have private insurance but as pain pumps and dbs etc are classed as either experimental or only for super serious life threatening cases, they will not pay for the treatment, i am also considering if there is a possiblity of going to the states for treatment and if i can afford it, in the meantime i am trying to help myself, i have just upped my dose again of amitryptaline and i am going to try and be pro active to see if there is any chance i can de-sensitise the nerve over time, i am fed up of being a victim, i want to be able to go on a plane for my holidays etc

but i will keep you posted of my successes or failures



andrea