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Update - Charting a New Course


#1

I want to thank @Acschiro for the advice and education. I also want to extend a thanks and sympathy to guys who tried spermatic cord denervation (SCD) without success. Your courage to post here was instrumental in convincing me not to jump into something I now have no intention of pursuing but to seek out alternatives.

I had a phone consult with Dr. Williams of the Dellon Institute today. He’s a peripheral nerve surgeon. He read through my case file from the Cleveland Clinic and PUR Clinic and believes he can help me. He believes my recent, positive responses to the SC block and GF block would lead him to perform a GF or triple neurectomy on my left side. Said he’d do a series of short-term blocks in his office to confirm, but believes that my situation is correctible because it’s so localized…one side, a primary “hot spot”, doesn’t radiate up higher as long as I do PT, etc.

He also agreed I should go forward with the pulsed RF ablation in 2-1/2 weeks saying we could learn more from it and that there’s a chance that’s all I’ll need since my nerve pain has stopped twice in the past. But, if it doesn’t work, he suggested a trip to Baltimore and sounded very confident he could help.

I’m officially off the SCD bandwagon. I say that with respect and thanks to all of you who have gone through it and posted about it, especially the risks. I want to specifically thank @MikeO for suggesting I talk with Dr. Williams and also @sdhc81 (Jesse) for posting about his terrible results from SCD.

For anyone else torn about whether to pursue SCD, I really urge you to check into alternatives like the Dellon Institute. It’s not to say SCD won’t work, but that there are other alternatives to look into.

Scott


#2

This sounds VERY promising. Wise choice. I wish you the best brother!


#3

Thanks. Promising might be an overstatement but I appreciate the encouragement. I’m just grateful that through this forum I found another alternative to SCD. Who knows, maybe SCD would work for me, but it doesn’t have a great track record.

I realize Dr. Williams’ approach also involves cutting nerves which is certainly not a risk-free proposition. I’ve got some homework to do on this approach, as well.

I cannot begin to thank the guys who have posted their experiences, pro and con, about SCD on this forum.


#4

Scott how are you doing?


#5

Doing OK today after the procedure. It was no better, no worse than a nerve block of which I think I’ve had 5 in the past.

I expect to be pretty sore in the coming days after the anesthetic has worn off and the nerve starts acting up. I just hope he got it. I was pretty sedated, conscious, but sedated. He was asking me if I could feel sensations, but I couldn’t feel much of anything.

Whether this works or not, I’m glad I tried it. I really want to know if my problem is spermatic cord or pudendal (perineal branch).


#6

What did you do? Feel free to point me to another thread :slight_smile:


#7

Is that around the time you were wondering why you were on your stomach with a blonde wig on? :laughing:


#8

I had pulsed RF ablation of my left GF. Theoretically, the ablation reduces or eliminates the nerve’s ability to conduct pain signals. It reportedly takes 2-4 weeks to feel the effect.


#9

Ah. I thought you got that done sometime ago. Hope this does the trick. I envy you guys I am pretty chicken shit to try anything else…


#10

Hey @raising4girls, where abouts was the insertion point?


#11

@raising4girls Does RF abalation require a needle insertion, @MikeO asked above.

Seems my situation is very similar, I’m 4 years post reversal. All my many crazy prostate issues went away post reversal as well as testicle pressure both sides. Left side now 100%. Right side I have direct nerve pain sensitive hotspots along the scrotum at the base of my penis seems similar to where my surgery incision would have been but can’t say for certain. Very sensitive running my finger across that area. Feels at times like only in scrotal skin but may well be in the cord hard to tell the way things move around. Inside thigh on right is sore a lot and when things are at their worst (like last couple of days hence my logging back in for first time in a while) it’s a burning achy crawling sensation that causes the back of my leg and perineum on the right to tighten and become uncomfortable. Everything seems above the testicle though - my goal like you is to ID the specific nerves and deal with them in the least invasive way possible. It’s almost more frustrating with the left side being normal, I know what it’s supposed to feel like. I can’t really squat at all anymore. Mark


#12

Mark, sounds like we’re a mirror image of each other as your right sounds like my left. Since the ablation, I’m feeling virtually no pain inside the scrotum. It’s really helped isolate the main pain which appears to run from the left side perineum, inner groin, and inguinal canal (at times). When it really buzzes, I can feel it to my lower back at L5/S1 where I had fusion. I swear it’s somehow all related.

The GF ablation procedure was no different of an experience than the GF block. They insert a needle that discharges current instead of dispensing a liquid chemical. Done under sedation. In and out of OR in 20-30 minutes.


#13

@mar2k Mark, this sounds very similar to my current situation…what therapies have you tried?


#14

jsh, I had a reversal in 2013 just a few months after the original procedure. I was lying in bed suicidal thoughts etc prior to doing something. Darkest days of my life. Dr. P did my reversal. The reversal solved many issues and I got my life back. Left with the right side problems I mentioned. I am afraid of further surgeries since I’ve gotten better over 4 years but not ruling out doing something the only thing I’ve done is had cord blocks which were overall successful and it’s definitely all nerve pain (unfortunately). Truthfully if it was just my wife and I it’s likely I would be more aggressive but when you have 2 school age kids it’s tough because you cant afford the down time…Mark


#15

what are your pain levels?


#16

Mar2k,

I understand your situation exactly. When you go from disabled and nearly suicidal to a functional place bit still having significant issues you get kind of stuck. You have similar issues to myself and @raising4girls. I have lingering issues on my left side that seem to emanate from the cord but also the groin and seat. It’s hard to pin down.


#17

@jsh pain levels are low like 1-3 just constant annoyance. Feels like a light bee sting all the time. When the muscles get tightened up its a bit higher pain level just so uncomfortable when back of legs tighten up. Was in some serious pain and discomfort pre-reversal though not to mention crazy prostate issues that all went away after reversal.

@MikeO you are exactly right especially when you have more good days than bad you do get stuck and paralyzed not wanting to make worse since I am functional. Problem is you get to a point that you wonder how all of this will affect you when you are older so you worry about whether you should deal with it now.

@raising4girls RE the RF ablation - I know when I asked Dr. P about less invasive options he felt RF ablation might cause scarring so that’s why he typically does cryo instead. Any thoughts on that since you have been through it? He seemed more open to Botox though as a non-surgical option, just expensive since is a crapshoot whether they can get insurance to cover it.


#18

@mar2k are you able to exercise at all?


#19

Great question. I talked to Dr. P., my Pain Mgt. doc, and @Acschiro about Cryo vs. RF. Conflicting answers to be sure. Acschiro ended up with some damage from Cryo. Dr. P. favors Cryo. Right now, it seems the prevailing wisdom in Pain Mgt. favors RF. Everything I read online seemed to indicate Pulsed RF is the least risky but offers the least durable solution. I went for low risk since I was doing this as a diagnostic as much as therapeutic.

I believe Acschiro has done more research on PVPS treatments than any person on the planet and has first-hand, patient experience with them. I put MORE stock in his recommendation than either of the MDs, so I went for RF.

So far, no regrets. In fact, the procedure pain was much less than the nerve block.


#20

Cryo and radiofrequency are from the old day apples and oranges. All pain specialists I’ve spoken and one who specializes in RSD says he will only use radiofrequency ablation because cryoablation will damage any tissue within 1 inch of it. I have a permanent dent around my pubic bone in my lower abdomen due to loss of all subcutaneous tissue due to cryoablation. Dr Dellon confirmed this was a direct result of the cryoablation and said cryo should be done away with permanently, he also doesn’t like radiofrequency but said he’s seen less problems with it, he prefers nerve removal but he’s a surgeon so they only believe in using what they know which is a scalpel. dr. P views it the opposite way he believes the radiofrequency causes more long term problems than cryo. Unfortunately you will get both sides of the coin depending on the doctor you are using and what technique they prefer. To my knowledge there is no specific study indicating one is better than the other and I have looked. My personal opinion is everything works different based on our bodies so what works for one won’t for others. They both temporarily kill of the nerves but they can regrow or reinnervate. This can allow for 3 things eliminate pain or possibility of pain returning or spreading.