Pulsed Radiofrequency

[Mistmi01]

Does anyone know a physician doing pulsed radiofrequency in the Los Angeles (or even Western US) area? I'm really interested in trying, since I've had pudendal decompression and a zillion blocks and would like to try something new.

Thanks

Jeannette

[Hidden]

jesus, why did you get that surgery?? you know the pudendal forums are filled with people who are worse after that surgery...

you live in the us, you have the advantage of compound pain creams....you should really try one...on the interstitial cystitis forums there was one lady with PN who used a cream and she said it worked better than a nerve block...ask your pain doctor..I don't know of PRFA over there, I live in the uk

[Mistmi01]

Actually, the people who are worse after surgery are usually from a particular surgeon, who is in my area. My surgeon isn't in CA, and has had quite a bit of success---I'm certainly no worse. I'm just not much better. So, I'm ot blaming the surgery.

My pain doc doesn't specialize in PN, he does general pain, but his wife is an OB/GYN, and he recognizes my pain is real and is willing to try new things. He just isn't about to do invasive things on me. I'm willing to try a compound pain cream--does someone on the board know the drugs/doseages?

[carliek in reply to Mistmi01]

Where do you live? You had surgery? PNE? Hibner? or Houston? very different results and methods. Your Physical Therapist assigned to you and under the surpervision of Hibner's PT person is the best source of getting better. You do need pain meds of some kind at the beginning, for it is a mountain of a surgery - ask the men who had it done with me. Eleven of us had it done together, half of t hem were men. A few of us got better; those with a good PT program - very good. I did not. I paid for it. TIPNA.ORG was the old site; is is referred on to a new site now and they are pretty good - full of material you could use. Try it. Carlie

[gwynnsh]

I've been looking into trying PRF ablation of the pudendal nerve myself. I'm a male that got nerve irritation after a bladder neck incision last March. I had my prostate removed in 2012 but then some scar tissue formed at the bladder neck & I had to have an incision to open it up a little more. Ever since that supposedly minor surgery, I've had pain in my perineum, rectum, testicles and behind my navel. Not to mention urgency, frequency, incontinence & burning urination. I never had perineum or rectum pain before the BNI nor did I have the urgency & frequency. It feels like I always have to pee even if I just went. This ordeal has caused bad anxiety and other issues & I'm hoping I can get my life back soon. I've read that PRF can really help though, so please keep me informed if you have it done. I'll keep you updated as well. What are your symptoms if you don't mind me asking?

[Mistmi01 in reply to gwynnsh]

Gwynnsh,

My symptoms are varied, and sometimes some are present and not at others. I consistently have burning pain in the vulva and vagina on the R side, difficulty urinating, intermittent perineal/rectal pain, intermittent so-called foreign body sensation, and pain down my leg. The intermittent problems come during a flare, and lately (past 3 months) my whole life seems to be a flare. I also am lucky enough to have severe back problems and hip problems, so it's getting very difficult to handle my daily life. I continue to work because I'm able to work from home,and I use a laptop desk called a LapDawg so I can work from bed. I honestly don't know how long I can continue, though. It gets harder every day. I hope you find some relief. I'm not better than I was before the surgery, but I'm no worse, so it was, in my mind, a risk worth taking. I really hope you find some relief, Gwynnsh. No one should have to live with this...

[carliek in reply to gwynnsh]

Are you in pain? Or are you are having urgency problems? Two different things. Discomfort and pain are two very different things. PNE pain is pain. Hibner in Phoenix is very good with any condition for male or female that is pain in the pelvic area - not just PNE alone. You may want to consider consulting him if you cannot find relief. He has an excellent Physical Therapy program that does bring relief for pelvic pain issues. Carlie

[gwynnsh]

No matter how hard it gets, you must always believe that you can get better. I know it's hard but you simply have to keep trying. We know our bodies better than anyone & unfortunately, it's up to us to seek out the right doctor. I would definitely try the PRF & see if it helps. You never know, it might just help. Keep me posted if you get it done as I will let you know as well.

[james5008 in reply to gwynnsh]

have you been on flouroquinolone antiobiotics?

[carliek in reply to james5008]

What is it and what for?

[carliek]

The only thing I would suggest to relax the spasms is the botox injections into the pelvic floor muscles to relax the horrible things for about three months, then get them again, and on and on. I do not know if you have had surgery or not, but the botox is about the only thing I know that will do it and it has to be given under sedation by a pain doctor who really knows what he is doing. I was the first person in the USA to have it done after I had surgery in France to no avail by Dr. Gajraj at Southwestern Medical School in Dallas Texas. I talked with Pr Robert in France and he explained the procedure to us and Gajraj just did it the next day. Southwestern is well known for the brain-power, and he is among the best. He is still in Dallas and is in private practice now. Dr. Hibner of Phoenix is training others to do it correctly I think; I may be wrong. He did my re-do surgery in 08. I still have pain - he went as far as he could go into the Alcock canal. It had just grown together again between 2002 and 2008 and I will live on botox I guess the rest of my life. Another well trained pain doctor is in Oklahoma City who does botox. I do not know where you reside; I am only familiar with this local area since I use it. The procedure has to be done correct or it is ineffective - the doctor has to know what the procedure really is for and where to place it. It is a delicate procedure to say the least. And very, very effective. I sat on a very, very soft cushion afterwards and slept 12 hours flat I was so tired. Pain is exhausting. Botox relaxes the muscles and it is given around the nerve in certain places the doctors have selected for this place and somehow, it prevents pressure onto the nerve and that is what hurts us. Check with your insurance about furnishing botox for a pain procedure; my insurance covered it when the doctor was a pain doctor and if he requested it and it was done under a light sedation in an operating room environment - not in a waiting room thing by a long shot. It is a medical procedure. Anything helps. Check with he insurance first. I hope this helps. Carlie

[Sherrio]

Carlie, who is the well trained pain doctor in Oklahoma City?! I just joined and I am desperate for help.