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Update on GF Ablation


#1

This has been one helluva a learning experience. Thank God I haven’t allowed anyone to cut into me yet as I still don’t have a real diagnosis since this flare-up started April 2016 after 9 years pain-free with only 1 6-month interruption.

The GF ablation is no big deal as a procedure. In fact, I was more sore after the GF block than the ablation.

Result - the hot spot on the cord is subdued, pain along the cord is virtually gone, and my light activities aren’t causing radiating pain throughout the scrotum. My strong guess is that the GF is/was PART of my problem.

The bad news - I’m still in a lot of pain. It’s almost like just a component was removed. I have left side pain that i’d describe as perineal and, perhaps, sciatic as it sometimes is over under the butt cheek. If you lay down on your right side and lift your left leg, it’s almost at the apex of the V. Occasionally radiates down to the foot. I’ve noticed a pull on the pain epicenter when I do a piriformis stretch.

Standing sucks, but walking feels GOOD!

Self-Diagnosis:

  1. Damage do the perineal branch of the pudenal nerve from vasectomy and/or bicycling.
  2. Entrapment of nerves by the piriformis muscle or some other muscle in the groin
  3. Sciatic (seems like a likely culprit since I had L5/S1 fusion)

As I said in a previous post, I feel like I’m playing Whack-A-Mole. I’m going to see a doctor at the Dellon Institute for peripheral nerve surgery. Also going for more pelvic PT.


#2

Great news. If I could make an appointment and drive directly to the office where you had your procedure performed and have it tomorrow I would do it. I have almost zero trust that I will find someone that will not make things worse or will claims they know what they are doing and make me worse. You found someone that knew what he was doing obviously.


#3

What I find remarkable is your “self diagnosis” is more articulate and better thought out than any urologist I’ve consulted with thus far. Perhaps an honorary MD should be in order for you!

@raising4girls


#4

Absolutely, he deserves credit for his steadfastness and methodical and persistent attempts to make himself well.

I think I’ve posted several times on this board as well that I believed my problems were not in the cord at all but the scrotum up near the inguinal ring. I even posted diagrams that I marked up in MSPaint annotating the area where I hurt/had pain. I just never was able to take it to the next step like @raising4girls. This falls into that “When all you have in your toolbelt is a hammer everything looks like a nail” category. Urologists don’t know how to fix us. They think denervation, reversal, spermatic cord block, epididymectomy, orci… because that’s what they are trained to do. They don’t know DICK about fixing nerve damage they create outside of those anatomical structures that fall under the traditional purview of Urology.


#5

Yea, it’s definitely interesting, and educational to read @raising4girls flight path over the last year +. It will be interesting to see how all of this plays out in the long run.

I’ve definitely learned about some new things since I began participating in this forum. That’s actually a big part of why I became an active participant.

Good luck @raising4girls


#6

Thanks. Yes and no. I DO think the PM doc is good at what he does. In the OR, he’s in complete command and seems to know exactly what he’s doing. But, the Cleveland Clinic is a factory setting, and his office visits are rushed. I’d love to tell him “look, I can afford the dough, let me schedule 4 of your 15 minute blocks and really review my history.” Might try that anyway.

If you go to the Cleveland Clinic, I’d suggest going to the main campus and ask to schedule and an assessment and, assuming it’s a go, any blocks or ablations in the afternoon or next day. The downside of me being local is the ol “try this and come back in 6 weeks.” I can do that because my PM doc works <5 miles from my home in a suburban auxiliary center of the CC. Convenient, but because of convenience, they don’t seem rushed.

As I sit here typing, my pain is not overwhelming. Just finished my stretches and sat. I’m at a 2-3. The mind games, as I explained to Williams and Parekatill via phone, is that I can spike it to the 6-8 without much problem.


#7

Yep, my GP recently told me that I don’t have a urological problem and that urology probably isn’t my best place to search for a solution.

Already had a reversal. If the pain was epi-centric, I’d look more into a re-do reversal. But, right now, urology’s only other intervention is SCD.

I will give credit to my uro at the CC. He’s taken a great interest in non-prostate Chronic Pelvic Pain (formerly known as Prostatitis). He even performs internal trigger point injections. I wanted no part of that!!! But, hey, at least he’s trying.


#8

Yeah, I’ve been reading/ watching your story over these last 6 months. It’s starting to sound more and more like you have healed from your initial vasectomy injury. However, it probably left you in a heightened neurological state, that is complicated by other lower back and pelvic problems. Meaning that a simple irritation to most men, riding a bike for example, has escalated exponentially from an irritation to devastating pain. I hope your GP is helping with the mental side of things. Maybe switching gears out of urology, will finally find you some relief.


#9

man @raising4girls, i have a bad feeling I’m in the same place you are in now. Sounds very similar. What kind of doc is the best person to diagnose and treat this issue?


#10

Probably pain management or a neurologist who specializes in pelvic pain. That’s rare unfortunately, but they do exist.

Maybe try looking on pudendal hope for a neurologist that is PN aware. Not saying you have PN, but finding a neuro who knows a thing or two about the pelvis is apparently pretty tough.


#11

like Pudendal Nerve entrapment you mean?


#12

Yeah, pudendal nerve entrapment or pudendal neuralgia. Guys rarely if ever have entrapment, it’s more of a female thing because of abdominal surgeries, childbirth, c-sections etc.

But a doc who treats PN is presumably going to know a lot about the pelvis and might be able to help.

Try here: http://www.pudendalhope.info/node/54


#13

nothing for my state. lol awesome


#14

Very interesting post @Kyvas. I’m with you on this being a possibility.


#15

Thanks @Kyvas @RingoStar @vasregret and @jsh for commenting. While posting is always self-serving, I’m hoping that sharing my story will help others since this appears to be a complex, multi-faceted situation for all of us.

I’m not sure the pudendalhope website is complete. The Pain Mgt. doc I see appears very comfortable doing pudendal blocks (did 2 of them for me about a year ago) but he’s not listed there. Just through Google I’ve found plenty of Pain Mgt. practices that perform blocks and ablations of all these pelvic-region nerves.

In the weirdest way, I’ve been hoping that my problem is GF but fearing it’s pudendal simply because of relative availability of solutions. If the problem is/was GF, then SCD and GF neurectomy were on the table as options, not great options, but options. If I’ve truly got pudendal neuralgia, I could be fvcked for the rest of my life. And, there are so few who treat it surgically.

That said, I am being honest in saying that my pains have moved around a bit, but it could very well be the posterior scrotal nerves that got damaged from the vasectomy and/or bicycling. What I can’t understand, though, is how well (not perfect) I felt for 2-3 months after Dr. P.'s mega block of the spermatic cord.

From late April through early July of this year, I felt good enough to bicycle 15-20 miles 3-4 times per week at a good clip (13-15mph). Why would I feel good enough from a spermatic cord block if the spermatic cord nerves (GF, II/IH) aren’t a big part of my problem?

Theories? What nerves run along side the outside of the scrotum, if any, or below the scrotum? Does the GF have any involvement outside the scrotum?


#16

@raising4girls have you had an mri of your pelvis/ lower back?


#17

Funny you ask. And here’s where the plot gets even thicker. Back in the fall of 2015, I was jogging a bit and got my L5/S1 segment irritated. I had an MRI which showed everything was clean but the left nerve root was a little inflamed. I had a couple lumbar injections and the back and leg pain went away. Three months later, my current bout of groin pain started.

I’m pretty well convinced that my groin pains are the result of bicycling and tight pants, but, like you said, the vasectomy injury and lower back surgery put the area on high alert.

Pain Mgt. hasn’t asked for any imaging since, but when I talked to the doctor at the Dellon Institute, he seemed surprised that I haven’t had any imaging done. That’s a big reason I’m attracted to seeing them.


#18

Arterial-supply-and-lymphatic-drainage-of-testis-and-scrotum-innervation-of-scrotum

Alright, so I’ve spent a lot of hours looking at pelvic and abdominal anatomy. I’ve also been seeing a fascial stretch therapist who is doing things that a PT should be doing. He’s helped me to actually visualize or comprehend which muscles, fascia and other tissues are weak, tight, compensating, etc. I’ve uploaded a couple of pictures. The first is all the fascia in the body and how it all interconnects. The second is the major nerve and blood pathways. I didn’t include the musculature which is even more complicated. I’m also sure this is redundant as you’ve probably seen these before, but it illustrates my point. All of this tissue is so tightly interwoven that i think it would be incredibly rare to only experience pain eminating from one particular nerve. Possible yes, but not the norm. More than likely you’ve got some sort of full pelvic involvement. Would explain why you still have pain even with the gf ablation, but would also explain why Dr Ps block may have provided you with relief because it allowed one of your offending sources to be turned off. Its going to be hard to figure out what’s happening.

I definitely think you should ask for a repeat mri and be very specific about your pain sources. I would actually see if the Dellon institute would put in the order for you as they may be able to provide specific orders to the radiologist. Don’t just let them write Pelvic MRI or Lower Back MRI. It should read more like MRI for pain located in the left or right perineum, scrotum, pudendal, pelvic areas, etc (whatever areas bother you). In your case, i believe imaging would be a good start to either identify or rule out visible issues.

Beyond that, look into a good fascial stretch therapist or Neuro kinetic therapist that can help you to isolate or at least confirm what you already suspect.

A member of my church spontaneously developed Pudendal Neuralgia that went undiagnosed because they kept focusing on the prostate. He’s unfortunately still in pain. He did the Anderson Wise protocol and says it’s the only thing that has gotten his pain to zero. However, he doesn’t follow it religiously because its time consuming.

Anyway, just some thoughts.


#19

@raising4girls so will Dellon take out your peripheral nerve?


#20

Way too early to know. Haven’t even been there. I actually opted to see one of Dellon’s associates because I was pretty convinced my main problem was GF, not pudendal. Long story short is that I’m effectively starting over with the Dellon Institute, be it with Dr. Williams or Dr. Dellon. I’m planning on getting familiar with the drive from Ohio to Baltimore.