Anyone Have Success W/New Pulsed Low Radiofrequency Ablation

[shawnmellis]

Has anybody had success with this Pulsed Low Frequency Radiofrequency Ablation to the pudendal nerves? I saw a post on here about one person who got a lot better with it. If so, please tell us, as this seems as if it may offer a new alternative to surgery.I just wanted to let everyone know that I do know at least two people who have gotten this new procedure done and it worked well for them. One went from a level 7 to 2 on their pain level. It has to be done with low frequency pulsed to be more safe and effective. There are only one or two I think doctors who do this. It sounds like a possible alternative to surgery, so I would like to hear from more people who have had this done with success. Here is what one person who had success with it done more than one time to them said about where they got it done and more info. about this procedure.

Pulsed radiofrequency nerve ablation has been a way to deal with chronic nerve pain for some time now. It is very new to treat the pudendal nerve this way, however, it can be done and is often successful. There is a difference between PULSED radiofrequency nerve ablation (Pulsed RFNA) and radiofrequency nerve ablation (RFNA). Pulsed RFNA uses a pulse frequency, and regular RFNA does not use pulses, it uses heat. If you have had even a few hours of pain relief with nerve blocks (GUIDED NERVE BLOCKS ARE THE SAFEST AND LIKELY TO BE THE MOST ACCURATE) it is likely you will have a good reaction to Pulsed RFNA.
Pulsed RFNA can give substantial relief lasting between an average of 3-18 months. Any potential side effects will last as long as the pain relief. Incontinence is a potential side effect, however, it is usually not experienced. Like any procedure, it can cause a flare for 3-7 days. However, the recovery is much less than what would be needed for a surgery, which has a low success rate.
Regular RFNA can give similar relief, however, any potential side effects will be permanent. The nerve will likely grow back, and when it does, it can follow an odd path, which can make it more difficult to treat in the future.
I recommend the Pelvic Health & Rehabilitation Center in SF. They also have a program to treat out of town patients, and will try and work with/educate your current PT for when you leave their care. They are fantastic. They also teach classes to PT's and are active in the medical community.

Shawn

[garth]

I came across a case report dated May 2009 about someone who had benefited from this technique

http://www.ncbi.nlm.nih.gov/pubmed/19461829

[mesquite]

Dr. Hibner will not do it. He doesn't think it is effective.

[nebbias01]

I am happy this treatment worked for you. Maybe I need to look into pulsed radiofrequency ablation instead of low temp. radio frequency ablation that uses heat. Does anyone know a location closer to VA that does this? Thanks. Nebbias01

[egley]

Hi,
I had this done at Stanford about 4 years ago, if memory serves me correctly.
It did not help me at all.
However, I am not sure they actually hit the pudendal nerve.
I was never able to feel the voltage they were applying in my right testicle (where most of my problem lies).
They would move it a bit, apply some voltage, ask if I felt it in the right testicle, I would say no, on and on we went for a while.
They kept trying and trying, then finally just pushed the voltage up quite a bit, I guess in the hopes of reaching the nerve by pushing more voltage.
I knew I was now getting my treatment because my butt was moving up and down!

Because of the difficulty they had I am thinking they never really hit the nerve. I never did feel anything in my testicle.
I spoke with a few people while waiting in the office, and they said it had helped them a lot.
After many, many disappointments this was enough to push me to try it.

Dr. Weiss, who I saw afterward, does not believe it works and that it could cause damage to the nerve over time.
After this comment, I decided to not try again.

Cheers!
Skip

[Violet M]

Hi Skip -- too bad it didn't work for you. How are you doing these days? Last you posted I think you had just had the neurostimulator removed. Did you ever get back to baseline from that?

Violet

[egley]

Hi Violet,

Wow, you have a memory!

I am doing OK.
Yes, I had the neurostim removed. I still had residual muscle spasms up and down my legs from it, which now have receded to about 50% of their original intensity. They did not get any better than where they were after about a year after the neurostim was removed.

I'm always game for trying something else, so I now have the pain pump. Still working on dosage. I've had it for a few months.
It has gotten rid of most of the muscle spasms and lower back pain which they were causing, so I'm pretty happy about it.
It does not have much effect on my pudendal nerve until the doctor pushes up the prialt dose to a pretty high level.
I am still working and can't afford the loss of my brain just yet. So, I'm getting by on a prialt dose that doesn't do much for the pudendal nerve.
I could push up the dose when I retire.

How are you doing?
So good to hear from you!

Skip

[Violet M]

Hi Skip,

That's good to hear the pain pump is helping a bit. I don't know if you remember Barbi (Soosore) from the old forum. She had posted about a pain pump really helping her although she was not on Prialt. The doc that put it in had to readjust it to a different spot several times before it really helped her though so I guess placement can be pretty important.

I'm doing really well -- thanks for asking. I'm back to work now and can sit for many hours a day. Honestly I never dreamed I would be this good again and soooo wish all my PNE friends could get their lives back this well. Do you have to sit a lot at work?

Violet

[egley]

Hi Violet,

No, unfortunately I do not have a memory like yours.
I was looking for people that actually had one to help me in my decision at the time, and I do recall a rather positive one like that.
My doctor has never mentioned placement. I didn't realize it was so crucial.
OTOH, prialt is extremely strong and travels farther than fentanyl.
She (my doctor) explained to me that fentanyl will stay close to where it is injected. It binds quickly to tissue or something like that.
Prialt does not, to which I can attest strongly. It makes it all the way into my brain, and turns my head to being a bit foggy.
But it is an extremely good pain killer. It's also non-addicting and some other stuff which I've forgotten. It's organic!
They stole the recipe from a snail, I believe. Very complicated molecule. It has north of 300 carbon atoms alone. That's why I'm claiming it to be organic.

Very glad to hear you are back at work. I'm hoping I will be where you are within a few years.

I sit for many hours everyday on the computer. I use a swimming noodle 'seat' to avoid irritating the pudendal too much.
I am hoping to make it to where I can retire, then start looking at the possibility of surgery.
The pain pump is for the interim.

I have not been here in a long time.
Are there any new promising surgical procedures you might suggest I read more about?

Skip

[Violet M]

Skip, PNE surgery seems to be pretty much the same as it has been for years with minor variations here and there from the basic TG approach. Most docs seem to be gravitating toward the TG approach rather than the TIR. The dorsal nerve surgery is now an option but so far we haven't heard of many successes with it. There's a doc in Turkey using a laparoscopic approach with an omentum flap to surround the PN to try to prevent scar tissue but it's too soon to know how well this works.

It sounds like prialt is giving you enough relief to cope so you probably don't want to mess around with catheter placement and risk getting worse. Hopefully by the time you retire there will be a miracle cure, right!

Violet