I'm researching cryoablation

[LottaNerve]

Hello, it's been years since I've posted here, but today I started researching cryoablation of the pudendal nerve and I am allowing myself to feel hopeful. I have been reading Jon's posts which have been very helpful, thank you Jon. I thought I would chime in with what I have found so far. I also intend to post my experience in pursuing this treatment, and of course whatever outcomes may be... Here are some links that might be helpful to someone else:

Dr. Jason Attaman in Seattle, WA:
https://jasonattaman.com/pudendal-neuralgia-treatment/

Dr. J. David Prologo, at Emory Johns Creek Hospital in Atlanta
https://www.wndu.com/content/news/New-p ... 78241.html
https://pelvicpainrehab.com/blog/cryoth ... neuralgia/

Dr. King in San Jose, CA:
https://health.usnews.com/doctors/eric- ... #hospitals

other:
https://www.wndu.com/content/news/New-p ... 78241.html
https://pmc.ncbi.nlm.nih.gov/articles/PMC10540710/

Note -- I have had all the PT, meditation, ketamine and nerve blocks I can stand as well as PN surgeries with Dr. Hibner and Dr. Dellon. The treatment that helped me was from Dr. Joshua Prager in LA -- a pain pump with the right medications to "turn down" the pain loop between my brain and nervous system. That has given me a life since 2013.
Cryoablation of the nerve -- which kills the pain, for however long -- is so compelling! For some patients, it has meant NO more pain for years. I would like to experience that before my life is over.... And the clock is a-ticking.

Sharon aka "Lotta Nerve"

[Violet M]

Hey Sharon aka Lotta Nerve, I remember you from before! I'm sorry to hear you aren't doing great, though.

Thanks for posting your research. I couldn't get the news links to work but the other links worked fine.

If you decide to go ahead with cryoablation I would be interested to hear how it goes for you. Sending hugs and prayers,

Violet

[stephanies]

Hi Lotta Nerve,

I had cryoablation in 2016 with Dr. P. I did not have a good experience with him as a doctor or with the procedure. I left Atlanta in a huge pain flare, the worst I have ever had and it lasted for at least a month, if I remember correctly. At no point did I have any pain relief. There were two other women who had cryo the same day I did and we kept in contact for a few years after our procedures. Both ended up worse than before the procedure. Other doctors I have seen since my cryo have expressed that they do not recommend the procedure due to how destructive it is to the nerve and how when the nerve regenerates the result can be worse pain. If you search this site under "cryo" you may be able to read others' experiences. I am happy to answer any specific questions that you have about the procedure and sorry I couldn't respond with more encouraging information.

Stephanies

[Violet M]

Wow, that does not sound good at all, Stephanie. Thanks for posting your experience. I'm sure it will be helpful to others.

Violet

[LottaNerve]

Hi again - I saw Dr. Jessica Stewart, interventional radiologist at UCLA, yesterday. The first step she takes is a nerve block under CT guidance. She said if I didn't have immediate relief from the initial numbing medication, that I should feel relief in a week when the steroids kick in. If not then she will try a nerve block in a slightly different area. Once she is certain about the location of the painful nerve and feels it is a good candidate for cryoablation, she can proceed with that. I will keep you posted.

[Violet M]

Lottanerve, are you scheduled for a nerve block at a later date then, or did she give you the nerve block? It's interesting that many doctors are still using steroids in pudendal nerve blocks even after some major medical organizations came out with guidelines that there is no evidence for steroids in pudendal nerve blocks. Maybe she is using the steroid to help with the diagnosis--locating the area of the nerve that's a problem--although I would have thought the anesthetic in the nerve block would do that. I guess that's a question I would have for Dr. Stewart. It does make sense that she is locating the correct part of the nerve before she does the cryoablation. Keeping fingers crossed for you.

Violet

[eraser]

Lottanerve, are you scheduled for a nerve block at a later date then, or did she give you the nerve block? It's interesting that many doctors are still using steroids in pudendal nerve blocks even after some major medical organizations came out with guidelines that there is no evidence for steroids in pudendal nerve blocks. Maybe she is using the steroid to help with the diagnosis--locating the area of the nerve that's a problem--although I would have thought the anesthetic in the nerve block would do that. I guess that's a question I would have for Dr. Stewart. It does make sense that she is locating the correct part of the nerve before she does the cryoablation. Keeping fingers crossed for you.

Violet

I think it depends who does it. Pain doctors love injecting steroids that's why. They don't seem to understand that it isn't considered treatment and is purely diagnostic.

[stephanies]

Lottanerve,

Thank you for the update. I hope you are able to get good information from you blocks and a path forward. Keep us posted.

Stephanies

[LottaNerve]

Hi fellow travelers! Sorry I haven't been on the forum for a while!
My latest Update:

As I explained before, the pump has been very effective but I have been struggling lately - having episodes of bad flares and the kind of pain where you have to withdraw from the world, get the ice, get the pain meds or lyrica or anything to dull the pain - and watch stupid TV. That's what I do. So... I am now trying another assault on my pelvic pain....
After learning about cryoablation, I am taking the first steps in isolating the correct nerve by getting nerve blocks from an interventional radiologist at UCLA, which I mentioned earlier in this thread. So, last month I had a CT guided left pudendal nerve block - Alcock's canal. It did nothing, zilch, no numbing of my pain whatsoever. So, this was disappointing and surprising, because she targeted the pudendal nerve. Apparently that is not the right target in my case.
So: she gave me another option for a block, targeting the posterior femoral cutaneous nerve.I have been researching it and looking at anatomy trying to figure out if it could be that nerve. It could -- because it innervates the perineum as well as deep in the pelvis and along the nerve route in my left buttock.
Hope that is helpful -- I will let you know how it goes!
Sharon

[LottaNerve]

Stephanie,
Thank you for sharing your experience with Dr. P! How are you doing now?
He does sound like one of theose doctors who promised the moon and stars but does not deliver. I went through that with the Hibner surgery and the Dellon surgeries. Neither of those surgeries helped - they hurt me more than helped.
So thank you -- I am so glad you shared that. It really does give me pause. I hate to give up totally because I still don't have a life - I can't go places or make plans or even know whether I can make it to a dr. appointment -- so I feel the need to fight back again. Sigh.
Hope you are doing better. I am so sorry.
Sharon