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Posted By : HDHOG - 5/29/2016 10:35 AM
Has any "male" out there had cryoablation of the pudendal nerve (PN). My PN was crushed by scar tissue from the results of Prostate cancer surgery. I'm find some females that have had this procedure with great success, but have not found any males yet. I know there's at least 11 completed in the past year from just one Doctor so i know you guys are out there. Trying to find out pros/cons, feelings, any side effects etc. etc Thank You
Age: 60
PSA: 6.7
Gleason: 9
Stage: T1C
Prostatectomy: Davinci Robotics 6-1-15, Saved both nerve bundles
Biopsy: 8 of 12 cores positive
Bone & CT scan: Negitive pre-Opt
Post-opt PSA 8-19-15 = <.1
Cystoscopy - 8-19-15 normal
PSA 6 months = <.1
Horrible Pelvic Floor pain!!!

Posted By : straydog - 5/29/2016 10:59 AM
Hello HD & welcome to the CP forum. I don't recall any males having this procedure done, not sure we have had any females either for that matter. I know a few have undergone blocks with limited success. In the meantime, does your dr have you on any of the medications used to treat nerve pain such as Gabapentin or Lyrica, just to name a couple? If not maybe it should be considered to try to give you some relief until something else can be done. However, these medications can take a couple of months to become totally effective & getting the correct dosage needed. They are not a quick fix.

Also, have you tried using the search feature here at HW to see what others have done for treatment with this problem? May be worth looking into.

Take care.

Take care.
Susie

Posted By : HDHOG - 5/29/2016 11:32 AM
Hey Susie:
I've done it all, not my first rodeo...been there done that! Duloxetine, Gabapentin, now Lyrica...CT & bone scans, Colonoscopy, 2 perineal Nerve blocks, Ganglion Impar block, Superior Hypo Gastric Plexus Block, Cystoscopy, Physical Therapy, chiropractor, Neurosurgeon, Interventional Radiologist, 2 Urologist, PN specialist, EMG's, MRI's. I know, Dr Prologo in Atlanta Ga is/has been doing Cryoablation on Purdendal Nerves for quite a while now. Have talked to a few females having "amazing results". His office told me they've done 11 males in the past year. The issue is Hipaa rules, which they can't/wont give out patient information. I get that, but I sent them a signed & notarized letter giving them my permission so when they do a follow up call, to give that patient my info and ask them to call me. I wouldn't know who's calling. The Doctors won't do this! Who wouldn't help out another human suffering????? I know I would.
Age: 60
PSA: 6.7
Gleason: 9
Stage: T1C
Prostatectomy: Davinci Robotics 6-1-15, Saved both nerve bundles
Biopsy: 8 of 12 cores positive
Bone & CT scan: Negitive pre-Opt
Post-opt PSA 8-19-15 = <.1
Cystoscopy - 8-19-15 normal
PSA 6 months = <.1
Horrible Pelvic Floor pain!!!

Posted By : straydog - 5/29/2016 3:26 PM
We both know that with both parties permission the dr could arrange for you to meet with one of his patients in his office to discuss this procedure. Drs. will still do this for patients needing certain surgeries & want to meet with a patient to discuss the surgery. This dr is just being hard nosed & blaming it on hippa. I found most patients were always willing to help out another patient in this manner.

If your dr has done 11 males is he not willing to discuss how those patients were afterwards? I put in pudendal nerve entrapment in our search feature & found several posts from the PC forum about this problem. You may want to check those out if you haven't already to see what those guys did for care.
Susie

Post Edited (straydog) : 5/29/2016 3:41:17 PM (GMT-6)


Posted By : HDHOG - 5/29/2016 3:50 PM
Susie:
He's willing to discuss there success ... which all seem well and major improvements. However, after cancer surgery and all the items and pain I've gone through. I want to hear the story "right from the patient" ... then I get all my questions answered, before any work is done down by "my junk"! I'm concerned about incontinence (both urniary/BM), a guys hydraulics, or lack there of! recovery period, did it relief burning of PN, does he still get flare ups? Every doctor I've been to thinks they can fix anything.
Age: 60
PSA: 6.7
Gleason: 9
Stage: T1C
Prostatectomy: Davinci Robotics 6-1-15, Saved both nerve bundles
Biopsy: 8 of 12 cores positive
Bone & CT scan: Negitive pre-Opt
Post-opt PSA 8-19-15 = <.1
Cystoscopy - 8-19-15 normal
PSA 6 months = <.1
Horrible Pelvic Floor pain!!!

Posted By : straydog - 5/29/2016 7:32 PM
HD, I don't blame you a bit. It would take 5 minutes for someone in that office to contact a patient & simply say would you be willing to meet a patient of ours in our office & answer some questions about this procedure. That is all it would take. I cannot believe they are not willing to accommodate you on this. Makes a person wonder just how successful they are at this.

I hope you can find someone that is willing to talk to you. Just a thought but have you tried looking on FaceBook to see if there is a group there? May be something to consider.
Susie

Posted By : HDHOG - 5/30/2016 8:35 AM
Yes ... Have been onPN Facebook page relentlessly...coming up empty. Will continue the search...thanks
Age: 60
PSA: 6.7
Gleason: 9
Stage: T1C
Prostatectomy: Davinci Robotics 6-1-15, Saved both nerve bundles
Biopsy: 8 of 12 cores positive
Bone & CT scan: Negitive pre-Opt
Post-opt PSA 8-19-15 = <.1
Cystoscopy - 8-19-15 normal
PSA 6 months = <.1
Horrible Pelvic Floor pain!!!

Posted By : Tirzah - 6/1/2016 10:17 AM
HDHOG,
I really hope a male will come along to give you feedback about this treatment. I had it done with RF ablation; the pain was beyond horrific and on top of that, I am an assault survivor so that pain was triggering flashbacks for me. I personally didn't have any side effects (just wonderful, blissful 80% relief of my pain) but that can vary from person to person.

Before the ablation, my PM did some nerve blocks for me on that nerve. They last for a very short time so if you got any problems, you'd know about it and they'd go away within a few days, tops. If you haven't already tried a nerve block for that, I'd maybe give that a try first and see how it affects you. The other benefit of doing an block under flouro is they can grab a picture of exactly where on the nerve gave you good relief without unwanted side effects so they can do the ablation at the same location & pretty well know how you'll respond. I highly recommend doing the injections first if that's an option for you.

best wishes,
tirzah

Posted By : HDHOG - 6/11/2016 6:54 PM
Tirzah:
I haven't check this page for a while (my apologies) ... anyway, I've already tried 4 different blocks and a ton of other items. I just check with 2 females that had the cryoablation freeze on Thursday... they are both "living life again"...pain free and excited.
Still...I just want to fine a male just to be on the safe side! Thanks
Age: 60
PSA: 6.7
Gleason: 9
Stage: T1C
Prostatectomy: Davinci Robotics 6-1-15, Saved both nerve bundles
Biopsy: 8 of 12 cores positive
Bone & CT scan: Negitive pre-Opt
Post-opt PSA 8-19-15 = <.1
Cystoscopy - 8-19-15 normal
PSA 6 months = <.1
Horrible Pelvic Floor pain!!!

Posted By : Spider2017 - 5/3/2017 9:21 PM
Pudendal nerve. I had for 4 months went to a chiropractor who specializes in A.R.T. Active release technique. If you have a ART doctor by you Go! I was back to normal after 8-10 visits. What state are you in. I have great resources for NJ.

Posted By : desol - 8/20/2017 11:45 AM
Hi Spider (and others), I've been struggling w/ pudendal neuralgia symptoms for the past four or so months and would appreciate any suggestions you have regarding treatments that have worked for you. So far have been doing some pelvic floor PT w/ limited success. Don't know much about Active Release Technique, but if since we're both in NJ (what exit?) I'd appreciate it if you would forward me contact info on the chiropractor who helped you. Thanks.

Posted By : straydog - 8/21/2017 2:17 PM
Hi desol, Spider only posted here the one time. You can use the search box above & read older threads on this subject. Same with HDHog, have not heard anything out of this person. Some have success with Botox injections & nerve blocks. None of it is guaranteed to work.

Take care.
Susie
Moderator in Chronic Pain & Psoriasis Forums

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