Health Organization for Pudendal Education

Skip,

I've had both TIR and TG with only some relief on the left side but the right is better.

I want to get off or majorly reduce the oral opiates I have taken since 2010.

A stimulator wont work from what I have heard due the fact that the nerve is damaged.

I am looking into a pain pump, other than the prialt, do you have any other advice.

Radiology (CGT) at St. Joseph's Hospital in Phoenix, AZ is offering this procedure (Dr. Hibner's team). I am scheduled to undergo it next week. This program was established about 2-3 months ago so the long term outcomes of the few patients who have undergone the procedure are still not known. I also would like to know if anyone has had success with this procedure. The vaginal burning returned 3 months ago after being resolved by the PNER surgery by Dr. Hibner about 7 years ago. It was disappointing but I am trying every route available to me to avoid having major surgery again. I am also using Senergy's Biostimulator with the vaginal probe every 2-3 days to resolve the pain. It works well. I recommend this device for pain anywhere in the body and it comes with a free, 30 day trial. www.senergy.us is their web site. I also use it on my glute for Piriformis pain every night, and other types of pain. I'll keep you all updated and I'd like to hear from anyone who has had the RFA done in the past.
Carolyn

Thanks for this info. My doctor, who is listed on this website as an expert, tells me that pulsed radio frequency is not good for peripheral nerves and can damage them. I literally do not care what she says because she is so useless (I have been getting unguided nerve blocks from her and ducking her attempts to put me on Gabapentin/Lyrica for almost a year) I know she respects Hibner, so I wonder what she'd say about this? I'm SO ready to go to either Hibner or Peters. Please keep us updated!

rainbowbutterfly wrote:My doctor, who is listed on this website as an expert, tells me that pulsed radio frequency is not good for peripheral nerves and can damage them.

She may not be wrong. Typically, PRF/PRFA was designed to treat tumors and other soft tissue. Some state that purpose of the procedure is to interrupt pain signals to the brain.
In all cases, this is achieved by damaging tissue cells. When used on nerves, pain relief is usually temporary, if achieved at all.

From one of the more recent PubMed articles:

Pulsed radiofrequency is a poorly understood technology that has increasing evidence for certain pain conditions; however, for cancer and peripheral nerves the evidence is slim to none. Our case presents a successful use for pain management of a brachial plexopathy due to a tumor. We propose that pulsed radiofrequency may present a non-neurodestructive pain management technique for tumors involving peripheral nerves, though more data is definitely needed.

http://www.ncbi.nlm.nih.gov/pubmed/23703430

Aetna's Policy of PRF:
http://www.aetna.com/cpb/medical/data/700_799/0735.html

Kind regards,
Karyn

mesquite wrote:Radiology (CGT) at St. Joseph's Hospital in Phoenix, AZ is offering this procedure (Dr. Hibner's team).

What is CGT?

Thanks,

Violet

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

Stanford Hospital offers the procedure.

Karyn wrote:

rainbowbutterfly wrote:My doctor, who is listed on this website as an expert, tells me that pulsed radio frequency is not good for peripheral nerves and can damage them.

She may not be wrong. Typically, PRF/PRFA was designed to treat tumors and other soft tissue. Some state that purpose of the procedure is to interrupt pain signals to the brain.
In all cases, this is achieved by damaging tissue cells. When used on nerves, pain relief is usually temporary, if achieved at all.

From one of the more recent PubMed articles:

Pulsed radiofrequency is a poorly understood technology that has increasing evidence for certain pain conditions; however, for cancer and peripheral nerves the evidence is slim to none. Our case presents a successful use for pain management of a brachial plexopathy due to a tumor. We propose that pulsed radiofrequency may present a non-neurodestructive pain management technique for tumors involving peripheral nerves, though more data is definitely needed.

http://www.ncbi.nlm.nih.gov/pubmed/23703430

Aetna's Policy of PRF:
http://www.aetna.com/cpb/medical/data/700_799/0735.html

Kind regards,
Karyn

There is no evidence that pulsed radiofrequency treatment damages nerves. In fact, quite the opposite. The evidence thus far is very clear that there is no harm, and points toward likely improved functioning of the nerves after pulsed RF treatment.

There is one exception, and if you physician is not an Interventional Pain Management physician she may not be aware of this. In some cases of tumor ablation, HIGH TEMPERATURE pulsed radiofrequency ablation is used, which is indeed destructive. However, we never use high temperature pulsed radiofrequency treatment for pudendal neuralgia in the pain world. Rather we universally use low temperature (42 deg C or lower) pulsed radiofrequency treatment.

Hello Team,

I am sorry but I guess a better late than never response is okay.

I have had pulsed radiofrequency ablation twice along with steroid injection in Hong Kong under CT guidance by Dr. Assad Hussain.

The first time I had it pulsed radiofrequency ablation had the best response with about 3-4 month effectiveness. I had a pretty big flare up for about 6 weeks after but then things died down and as long as I did not sit, bend or any of the other things I felt pretty good.

The second time I had pulsed radiofrequency ablation with steroid with 4 months after that and my flare up was almost 2 months but was not as effective. I think it has a lot to do with how close they get to the nerve..and accuracy by MD.

It has been over a year since my last pulsed radiofrequency ablation and I am thinking about repeating this spring. I am dreading the flare up that always happens afterwards but this might be my only other option as I cannot have too many steroid injections.

I, like you, always pray that one day there will be a cure or I will just wake up one day and the pain will be gone. Until then, thanks to all of you for your support as we triumph over this together.

Take care