Health Organization for Pudendal Education

Hello,
I am new to this forum. I am very delighted that you are such a wonderful support team.
I am scheduled for a combined block with pulsed radiofrequency ablation of my pudental nerve this upcoming week. I promise that I will report back in with my results or at least give you an update. BTW, I am currently living in Hong Kong.
Take Care
Bobbi

I had pulsed radio frequency in the UK some years ago. It gave me about ghree months of modest improvement, thats all.

Regards Molly

Is anyone aware of a trusted medical facility that offers pulsed radiofreq in the San Francisco area?

Hi Bobbi,

I would be interested to hear if you had success with your procedure. A couple of people have posted PRF ablation helped them.

If you know of good docs in Hong Kong who treat PN please let me know. I don't think we have any docs from Asia on our list yet but it would be nice to have some.

Best,

Violet

Hello,

I had pulse of posterior femoral cutenious nerve. Around 20 to 30 percent pain reduction but then everything comes back. I did it in Cuyahoga Falls, Ohio with Dr. Samer N. Narouze. Travel back was a nightmare because of pain. I am not sure that it was worth it.
However my husband met relatives of people from all around US and Canada while waiting for me. Dr. Samer N. Narouze RFAs basically very many nerves and some people find it helpful to come to him for many times. Interesting detail. He used to work for Cleveland Clinic and now works for tiny hospital in Cuyahoga Falls.

Dr. Hibner and Dr. Kay, Radiologist at St. Joe's in Phoenix are working on getting approval for RFA right now. I will try it once the hospital approves it whenever that is. Nothing else has worked for me except Neurontin to help with the pain. But, it still doesn't kill all of it. cannot take narcotics.

I have the highest respect for Dr. Hibner and St. Joe's. I'm glad he is not rushing into only surgery as a treat ment.

I found a pain anesthesiologist through Stanford who evidently does pudendal nerve pulsed radio-freq ablation. His name is Dr Jamasbi 510-647-9638. I don't know where you live but he is close enough for me. Now I'm wondering though if it helps at all. I would hate for the nerve to reroute or expand due to the partial ablation. I'm still a bit frightened of it. Like you, I won't take narcotics since I am learning to manage the pain. I have found muscle relaxants to be partially helpful as well as Neurontin. A book called How to be Sick has helped me as well. Best of luck to you!

Dr. Hibner is about ready to do this procedure. I met with him about a month ago now and he said that St. Joe's Radiology Department had purchased the equipment. Dr. Ray in Radiology would be doing the RFA under CGT. I am on the waiting list and have a call into Dr. Hibner's staff to understand how far down the list I am right now. My PN pain levels have recently increased and I am eager to find a solution to my pain and to heal the nerve.

That's good news, Mesquite. Hope you get in soon. What is CGT?

Violet

Hello, I am sorry for my delayed response.

I had 3 blocks and 2 of them were with pulsed radiofrequency ablation (PRF) this year by Dr. Assad Hussain in Hong Kong. I was his first PN patient and it was his first time performing this type of procedure under guided CT. (If you are in Asia and think you may have PN/PNE, you are not alone and there is help out there for you)

I had 3 hours of blissful relief after the first "Caine" block with steroid only (No PRF) on (alcocks canal, piriformis, and area where pudendal nerve crosses the sacrospinous ligament and dives under the sacrotuberous ligament.

We proceeded on with 2nd block and also 1st pulsed radiofrequency ablation procedure (alcocks canal, area where pudendal nerve crosses the sacrospinous ligament and dives under the sacrotuberous ligament and attempt to inferior rectal nerve and performed a block on my SIJ). I had 6 weeks of a significant flareup after the procedure but eventually started to have significant possibly 70% improvement. However, I was still not able to sit even with assist devices without bad pain, so we decided to do the 3rd procedure.

Then 3 months later, I had my last block with pulsed radiofrequency ablation (alcocks canal, area where pudendal nerve crosses the sacrospinous ligament and dives under the sacrotuberous ligament and ganglion impar. He also did a block on my SIJ). Now it has been about 6 months ago since my last procedure and my last flare was really significant and pain almost just a bad as when I was first diagnosed and lasted almost 2.5 months. (Maybe having Pulsed radiofrequency ablations only 3 months apart is too much) However, during this time I continued with PT, acupuncture, medication management, orthopathy and self pain management and now have seen significant improvement. I am still unable to sit even with assist with out significant pain but just not have to have bad pain laying down or standing up or all the time is a huge improvement for me.

I have gone from bedrest only and a pain scale 8/10 to pain scale 3-5/10 on most days and much more active. I don't think these procedures should be taken lightly but may help break the pain cycle along with other treatment modalities. The single most helpful treatment you can do is staying positive, minute to minute pelvic floor relaxation and stretches and exercises that PT gives you and desensitization.

Would I do PRF again? Yes I would if my pain levels go up high 8/10 and cannot be managed by conservative care. However, I would not schedule 2 pulsed radiofrequency ablation treatments only 3 months apart..as it takes a while for that nerve to settle back down.

I do not visit the forums frequently so Violet if you have more specific questions feel free to contact me. Take Care