People With Success W/New Pulsed Low Radiofrequency Ablation

[jaxi123]

Dr Attaman what is your opinion of Cryo ablation?

[saint]

Can anyone give me more information on this? I had back injections and got blessed relief but then the pain came back. I have to do something as it's unbearable.

[Violet M]

You had back injections that relieved pudendal neuralgia?

Pulsed radio frequency ablation has mixed reviews just like pretty much every PN treatment. It works for some people (temporarily) but not for others.

Violet

[JJ11]

I have had 2 Bilateral Pudendal Nerve Pulsed Radiofrequency Ablations over the past year. They have been the most beneficial treatments (out of many) that I have received since aquiring Pudendal Neuralgia 7.5 years ago. They were performed by Dr. Stephen Coleman at Stanford University and just like Dr. Attaman in this thread explains, he has told me that there is no real "Ablation" involved. Both times I experienced a calming of my symptoms (sitting time went from 1 minute to 20 minutes) but I experienced a flare up after a few months following each. I am going in for my third procedure at the end of this month hoping to calm my symptoms down again. I am very interested to know what others have found out about having this done multiple times.

[VickyFL]

PN after compression fracture of L1 L2, 2008. Years of burning pain. Recent help with RF Ablation - covered by insurance. Florida. - ONLY 25% of the pain I had prior to ablation I had presently. It was important to have 3 treatments to knock the pain down

[VickyFL]

I should mention it was critical to get towards the Cluneal nerve as well - often the assumption is that you have PN when Cluneal is involved. During blocking and ablation important to get at both for me. 75% of my pain is gone but I have had blocks(because insurance requires it) and 4 ablations.

PN after compression fracture of L1 L2, 2008. Years of burning pain. Recent help with RF Ablation - covered by insurance. Florida. - ONLY 25% of the pain I had prior to ablation I have presently. It was important to have 3 treatments to knock the pain down 75%

[egley]

JJ11,

"...but I experienced a flare up after a few months following each."

RU saying that the relief only lasted a month?

I had this performed on me at Stanford... gosh, must be 10 years ago now.
It did absolutely nothing for me.
I was very disappointed it didn't help me at all. I mean zilch. Nada.

But I have to wonder if they really hit my pudendal nerve. The doctor told me, 'let me know when you feel it in your testicle' (this is my major point of pain).
I never felt it in my testicle as it was moved around.
And I think they became a little nervous because the room was probably booked and we had to get out of there.
So, my belief is that he just turned the thing on even though it probably wasn't exactly where it should have been (if it's so important to feel it in my testicle).

But my PCP has another patient with PN who has found relief from this, so she is encouraging me to try it again.
But if it only lasts a month, I can't see much point.
I have a solution which is working for me. Out on disability and the pain pump.
But I would love to get off of the pain meds.
Simply getting good sleep (because I don't have to get up and go to work) makes a big difference.
I glanced at results from a double blind trial with melatonin (10 mg nightly), and they found that those who received the melatonin had nearly 40% reduction in pain (along with more sleep).
They seemed to suggest (I didn't read the whole thing just the abstract) that it was the melatonin.
But I wonder if it wasn't just the sleep.

Skip

[saint]

Are there any risks with radio frequency ablation? From what I'm coming to understand, some people have an entrapped nerve and others have damaged nerves, like me. How can a nerve be ablated (killed) when it has important functions? I'm afraid to get anything done because the nerve controls the bladder and rectum. This board is hard to navigate and I'm trying to figure this all out.

[egley]

Saint,

There was a reply from Dr Attaman about this (not sure I am spelling his name right) at the bottom of page 1 of this post.
He is saying that the term 'ablation' is not appropriate. He uses 'Treatment' instead.
It doesn't zap the nerve out of existence.
It is 'pulsed' in such a way as to not generate a lot of heat which would damage the nerve.
I believe when they use the term 'ablation' it is meant they are deliberately destroying the nerve.
Not sure why this misleading 'ablation' term got stuck onto this procedure. it's unfortunate.

But I spoke with Dr Weiss (the urologist, not the other one), and he is not convinced it doesn't damage the nerve.
It was a long time ago (around 2008). I'm not sure he still holds to that opinion today.

All the best to you!
Skip

[saint]

Hi Calluna,
I wish that people who have success with this, would keep us updated on here to help us all out more. At this point, I am leaving all options on the table including this new procedure. I do not want to rush into surgery without exploring all the options and making sure of my diagnosis. I wish more people who have had success with this would post regarding this treatment, but it may be relatively new for the Pudendal nerve and there does not seem to be a ton of doctors who do it. If you know of anybody else who has success with it let me know and post it here to keep us all updated. Take care. There's Always Hope.

Shawn

I too wish others would post here of their results. Can you tell me the percentage of people who improve vs those who get worse with this procedure? I'm afraid of incontinence.