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My personal update - suggestions appreciated


#1

It’s been a while since I posted an update on my own condition. I’m edging closer and closer to some form of surgery, just not sure which.

A background, this is my 3rd bout of one-sided (left) scrotal pain since 2005. The first bout started after my last bike ride of 2005, lasted 13 months, and had a reversal about midway through. Right after the reversal surgery, the doctor stated I was not clogged but was “actively leaking” from both tips. All along, he felt the granulomas were my pain source and he appeared, at the time, to be right. I was pain-free from late 2006 through April 2016 other than a 5-6 month relapse in 2008-09, my second bout, that was cured by rest, celebrex, and gabapentin. The results of the second bout also led me then and lead me today to believe I have a neuropathic component to my pain. During that 2nd bout, I identified a “hot spot” (former forum moderator Dr. Ellis’ term) in/at the head of my left epi.

This bout is now 31 months old, ups and downs, and it also began following bike ride, first out in 2016. After 31 months, I’m now back to where it all started but with a lot more knowledge. The worst moments included severe perineal pain, but that’s been at bay for nearly a year after pelvic PT and pudendal injections. I believe that was run-of-the-mill pelvic floor tension, not pudendal neuralgia.

I wake up most mornings pain-free unless I sleep in a bad position. Activity and movement gets the pain cycle going. As many have experienced, no support is bad, but too much support is bad, too.

When on Lyrica (which my insurance won’t cover), the pain remains completely totally focused in the scrotum on this hot spot. When on gabapentin, it radiates up into the left pubic region.

I’ve never had the flu-like symptoms, chills, etc. that some have experienced. My T-levels have been 650 and 760 during this bout, and PSA has been 0.7 - 0.9.

I’ve seen and talked with 4 different specialists in the last few months:

  1. Dr. P - gave me a left spermatic cord block w/botox on 6/25. Really sore that evening, then had good pain relief first 2 days, then a week of status quo pain, then 5-6 weeks PAIN FREE! I was doing great from around 7/7 through 8/20! Wonderful vacation, thought it was all behind me. Pain returned around 8/20. :frowning:

Dr. P. believes I am a good candidate for SCD based on this and my favorable result to his “mega block” back in April, 2017. That block’s results lasted a couple of months.

  1. Dr. Shoskes (uro at Cle Clinic who is only uro in Ohio to perform SCD and is one of the highest-volume providers of SCD in the US) - Saw him on 9/7 and he gave me an in-office spermatic cord block. The pain in my “hot spot” went away (a numb feeling). I was able to touch it without wincing. He’s willing to do SCD. He doesn’t have the same bedside manner as Dr. P., and I worry that SCD is his only weapon. I’d like to work with a surgeon who, if necessary, would do orchiectomy.

  2. Pain Mgt. at Cleveland Clinic - Saw him on 9/12 and told him about experiences with Dr. P. and Dr. Shoskes. He admitted he had fired all the bullets he had (nerve blocked, pulsed RF ablation) and felt I should go forward with SCD via Dr. Shoskes. Ending my script of Lyrica.

  3. Dr. Williams at Dellon Institute - GREAT appointment on 9/24, so glad I went. I may go forward with him, but he was the best diagnostician I’ve seen. Started with re-run of my history and then an exam. He found my hot spot and said “that’s your epi…has anyone suggested epididymitis.” I said yes, but that the uros felt my epis were still flaccid and that sperm count was OK. I also mentioned that two uros don’t believe congestion causes pain. He didn’t react.

We started with a II/IH block up pretty high as Pain Mgt. did. I walked the halls, sat with legs crossed, anything I could do to spike pain for about 30 minutes. Then he returned. I suggested he re-do a scrotal exam like he did pre-block. I about came off the table. So, clearly, the II/IH is not part of the equation. That jives with the result I had from my II/IH block back in 2016 and the general view that the GF gets nicked more often in a vasectomy than the II/IH.

Then he did a GF block, again US guided. Again, above the scrotum, but down a bit lower than the II/IH block. Got some of the topical agent on my sack. That was worse than the injection. Same routine. Walked, stretched, etc. This time I was already noticing pain reduction especially around my hot spot. He came back after about a half-hour and did a scrotal exam. NO PAIN! I mean he bounced my left epi like a basketball and it didn’t hurt. He admitted surprise based on my pain being epi-focused but agreed the GF is the culprit. He said he’s like me to come back for another repeat-experiment but, at this point, he DOES think I’m a good candidate for GF removal if I think the numb feeling in my groin is worth trading for scrotal pain relief.

  1. Dr. P. (again) - repeated the cord block/ablation with botox about a month ago. This time, not much, if any, benefit thus far.

At this point, I THINK SCD might work, and I THINK GF neurectomy might work. I see both as risky, but I also think I’ve done enough to validate their merits. I’m not a guy that can’t function or work but I’m in enough annoying (not debilitating) pain that it’s wearing me out. After 31 months, I don’t think this is going away.

My self-diagnosis is one of three possibilities:

  1. Some scar tissue inside or near the epi is entrapping or pressing on the GF or branch of the GF.
  2. The GF itself is damaged near the epi and the epi presses on it.
  3. The reversal failed and the epi is in pain that’s being felt by the GF. Maybe the same scar tissue responsible for the reversal failure is entrapping or pressing on the GF.

Either way, I’ve had three recent and a fourth a year ago positive responses to blocks. I might be able to add a 5th and 6th from the Cle Clinic’s Pain Mgt. block and ablation of my GF, but each one was followed by bouts of pelvic pain. That’s when I was playing pain “whack-a-mole” and I’m not sure if I got anything out of those or not.

BTW, Dr. Williams criticized Pain Mgt. in general by saying their pride in using a minimal amount of anesthetic. I told him I wasn’t sure about my GF blocks and he said they probably didn’t hit the nerve because Pain Mgt. guys don’t use enough. He loaded me up and clearly numbed the GF. It was actually nice being awake so I could watch. My Pain Mgt. guy almost bragged that he only uses a spoonful. He probably missed it altogether.

I’m throwing a couple Hail Mary passes in the coming weeks but don’t expect any results.

  1. Doxycycline - been on this for 10 days and GP agreed to extend for a month. I doubt this is an infection but feel like it’s worth checking one more time. Where would it have come from since my last scrotal surgery was 2006? Why always the left side but with a remission 2009-16?

  2. Scrotal US - want to see if there’s been any change since mid-2006 such as growth in size.

  3. Semen Analysis - going for one more SA. Last SA was only 10MM which could mean left side is closed, of course, but at nearly 54, I’m not sure what my count could be expected to be.

Lastly, in about a week, I’m seeing a surgeon at the Cle. Clinic who performs lapropscopic neurectomy to get a 2nd opinion on GF neurectomy.

I’d love to find a way to do a one-sided SA but have been told that’s risky and expensive and haven’t found anyone willing to even try it. If I could prove left-sided congestion, I’d probably opt for orchiectomy. Right now, I’m pretty sure Dr. P. wouldn’t do orchi without first trying SCD. At the Cleveland Clinic, if I go for another cord block and do not have pain reduction, I think he’d perform or refer for orchi.

At this point in my life, I can’t see my way to a paid-for reversal.

I’m very interested in hearing your thoughts, if you think there’s any more homework I should do, and if any of you are in the SCD-under-no-circumstances group.


#2

Hi @raising4girls, just to clarify, pain is in the epi, not where you were re-connected?


#3

Yes. I must tell you I avoid self-examination but every doc seems to make me wince when they get to the head of the epi but not along the vas.


#4

Obviously I’m not an expert, but wondered if you developed some kind of blockage in the epi?


#5

Similar to you I have narrowed my main issue down to a specific nerve but different than yours. My issue seems to be illioinguinal nerve. I have consulted with the same doctors that you were talking about except for the ones in Cleveland but I have not personally seen them in person. I am in the still working with Pain Management phase however the procedures you speak about are on the radar. I wish I could give you advice in what to do but no idea. I have researched both procedures on the internet but I think most people that get good results don’t post on internet. They move on with their lives. The posts are the folks with bad outcomes similar to this site. I have heard the success rates from these doctors which sound like a no brainer. Cut my nerves if 85% of the time I am back to normal. This site and the internet gives the bad outcomes and pause. After my vasectomy I could barely work, was blindsided, and in pain. I could not and still can’t enjoy alot of hobbies I took for granted even exercise. It has taken months to feel somewhat confident I can make it to work albeit in discomfort and moderate pain. I am nowhere close to the same man preVas but functional. I have to spend hundreds of dollars a month to stay functional with PT, chiro, and meds but it’s working. When you almost lose everything you get gun shy with additional procedures even if those procedures could give you your old life back and high success rates. I guess where I am going with this is if you can work and if you can still somewhat function and enjoy family things don’t take that for granted and weigh that in your decision. I said a prayer for you in church today. Good luck with your decision and I will be watching your outcome.


#6

I’m on board with your personal opinions, or thoughts as to where, or why far as possibilities to the root of your issues. It makes sense. You may add some sort of fibrosis that’s manifested over time into your equation as well.

In the past, you’ve mentioned the bicycle involved in your relapses as well, which could easily tie into what your thinking to. You’d think something set things into motion far as your setbacks (an inciting event). There are several guys on this site that seem to have an inciting event of their own. Once again, no guarantees on this philosophy, but it does make sense. Was it disruption of scar tissue? Wast it this, that, or the other? Hard to say with any certainty.

I do think many guys are dealing with similar issues far as the scar tissue, fibrosis, etc as the root of their problems. But, that’s just an educated guess, there are no guarantees, and I certainly don’t have all the answers.

In your case, you had a reversal nearly a decade ago~, and given what I know about your reversal surgeons methodology, and ideologies regarding reversals for pvps patients, I feel pretty confident saying your reversal surgeon removed everything during the procedure far as anything foreign, possible hemoclips, electrocauterized damaged tissue, scarring, sperm granuloma, etc (full clean up).

I have no suggestions far as what you should do next as there’s to much risk involved. Sounds like you have several ideas far as possibilities regarding what to do next already.

Good luck with whatever you decide to do.


#7

After massaging and stretching my right testicle where my injury probably happened last week and all of a sudden started getting electric taser pains in the right testicle I am thinking this is alot of my issues along with inflammation in that same area.


#8

Very, VERY possible, but I think I’m going to proceed as if nerve-related problems are at least part of the problem. Too much evidence pointing toward that. Also, no matter how I flow chart the go-forward process, it seems like addressing the nerves is a simpler process (other than trying papaya therapy).

If I were to move forward under the theory of a congested/blocked epi, my surgical options are all bad:
(1) re-do reversal, maybe vas-to-epi - that seems to have a low likelihood of success while introducing risk of MORE nerve damage and more scar tissue formation.
(2) epi removal - that’s a total non-starter, never-gonna-happen for me which leads me to, practically, the best of a bad bunch
(3) orchiectomy - I freely admit this COULD be in my future, so I’m looking for potential solutions that enable me to retain my testicle.

So, while I think epi blockage is a very real diagnosis, there’s no real good way to determine if one side is blocked.


#9

Thanks Ben, you’re a good man. I say a prayer every Sunday for all the guys on this forum. Let’s both keep posting our notes and thoughts as it’s clear we’ve got some similar challenges, perhaps just a different nerve.

In your case, if it’s II/IH, Dr. Williams would likely just take that one out without doing the GF. As I understand him, his worry when trying to do the GF only is the potential for damaging the II/IH while going at the GF which is, apparently, below the other. In other words, it’s easy to nick the II/IH while resecting the GF. But, in your case, if it’s just the II/IH, he doesn’t have to dig as deep.

I like Williams a lot. My problem with him is this unconfirmed, small inguinal hernia. If it’s a hernia, Dr. Williams isn’t certified to fix it (he’s clearly capable, just not authorized as a plastic surgeon), so he couldn’t fix a hernia on the fly if he found it while in there. The surgeon here at home in Cleveland IS board-certified as a general surgeon and could fix a hernia while resecting the GF. He wants to know through imaging if there is one but confirmed even if imaging shows no hernia, if he finds one while in there, he’d fix it. That alone has made my decision to go with him, not Williams, but I want to emphasize to everyone here that my situation is unique. I think Williams is a tremendous diagnostician and a good resource for our forum members/sufferers.


#10

Well summarized Ringo. Your points about scarring and fibrosis are spot on. That seems to be what all the docs (uros, plastic surgeons, and general surgeons) are saying is at the root of my problem. The question now is how or if to deal with it.

After my appointment yesterday, I’m strongly leaning toward resection of the GF above the inguinal ring. I want to go through the imaging ordered and one more round of nerve blocks in the spirit of “measure twice, cut once.” Unless something changes or I uncover new information, I’ve pretty much ruled out SCD. Given that I’m 13-1/2 years post-vas and 12-1/2 years post-reversal, that’s a lot of time for scar tissue to form and for Wallerian Degeneration to occur, and I don’t think SCD will be sufficient.


#11

Thanks for the update @raising4girls.

I’m still on the fence regarding Wallerian Degeneration, or in other words, I’m not sure if I beleive in it, or how relevant it may be in regard to however many cases of scrotal pain, pvp, pvps, etc.

I know of several high end doctors, urologists, etc that share my opinion about it as well. Hard to say what’s really going on, but I definitely wouldn’t rule out the ideology as it’s one of few that makes some sense, or at least on occasion.

Perhaps in time the medical community will sort the Wallerian Degeneration theory out from opinion vs fact, relevancy, statistically, etc. I certainly don’t have all the answers.

Keep us posted.


#12

You’re right, we don’t know. Even Dr. Parekatill who purports the theory of Wallerian Degeneration hedges when pressed and freely admits they/we don’t really know the etiology of pain in the scrotum.

It could be a distinction without a difference. In the end, we may be debating how we drove into a ditch when, in reality, it doesn’t matter, the only way to get out is with a tow truck. Modern medicine doesn’t offer a lot of solutions for chronic scrotal pain and doesn’t know why it happens.

My logic at this point for my own condition is this:

  1. Assuming my epi is blocked would lead me to a, potentially, a re-do reversal. That, however, introduces a huge risk of further nerve damage if a blocked epi is not the problem. And, after all this time, even if the blocked epi IS the problem, a re-do reversal might not work. I view this as a high-cost, medium risk, low-probability solution, so it’s not top of my list.

  2. Orchiectomy would also solve a congestive problem but introduces the risk of nerve damage. I’m not convinced urologists are very good at burying the nerves they cut as the guys who perform neurectomies. I think that’s why guys sometimes develop new pains from orchi. New scarring, etc. So, I view uni-lateral orchi for me as a 2nd surgery, not first, but before reversal.

  3. SCD or GF Neurectomy - I like leading with neurectomy. I know with high confidence that the GF is likely the culpirt and the II/IH is not. If I have the GF resected and still have pain (from, say, congestion), then I could do an orchi and not have to worry about a uro damaging the GF since there wouldn’t be one left to remove.

For me, after going through 2-1/2 years of thought and analysis, this seems like the best 1-2 punch of a lot of bad options.


#13

I still believe that vasectomy reversal was my best option, even though it was one side I have been pain free since, and I am no longer sterile which is also great for my head, I am only speaking for me cheers men


#14

Would be nice to see the two quotes above in bold print on every man’s vasectomy consultation paperwork worldwide, and on every vasectomy website, lol.

And IMO, they do know why it happens sometimes. They are outlined in urologys risks sections, are on many other credible websites, are on many men’s vasectomy consultation paperwork. But, nobody would guess a board certified urologist would be selling anyone a procedure that was potentially devastating without proper exhaustive informed consent.

Like I’ve said many times, the real question is why doesn’t every man experience these problems. In this case, I’m speaking about speaking of pain alone, especially after typical treatment’s have been exhausted.

It’s not just the vasectomy guys either, it’s varicocele pain guys, and down the line. I still tend to believe there’s something to the idea of structural differences, and/or abnormalities within the CNS myself.

Yea, I’m definitely falling off the fence regarding you having a redo reversal. Idk, hard to say much as we don’t have any worthy statistics to make any assumptions about.

If we go with at least one of your mentors opinion regarding an initial vas to vas reversal may be helpful in regard to Wallerian Degeneration, seems in some cases a second might be helpful as well. Hard to say either way.

Given the pinpointed source of your pain as you’ve described many times, I’m not thinking a redo reversal that coincides with the Wallerian Degeneration theory is even relevant in your case.

Would I go vas to epi if I was in your shoes? If I went with my gut feeling, my answer would be no, and my reasoning is that I don’t believe it would be of any help with scarring, and/or fibrosis within the epi. If things are scared, fibrosis, within your epi, I don’t see how a vas to epi could help. So, we aren’t talking about just congestion anymore, we are talking about damage, which is pretty much exactly what I told you nearly two years ago when you first started posting here.

Whatever you do, don’t let cost be a factor in whatever you decide to do. Get it right the first time. Don’t let anyone, including myself influence your decision. Nobody but you has to live with the outcome of whatever you decide to do. People come and go, and don’t live in your shoes.


#15

Me too. I had my reversal in 2006 (13 months post-vas) and was pain free from late 2006 through mid 2016 except for a 6-month relapse 2008-09.

I am for the most part pro-reversal. That said, for me right now, I don’t think a re-do reversal makes sense.


#16

Interesting. I don’t see the distinction here. What’s the difference between blockage and scarring, or are we just talking about the degree? I think fibrosis is synonymous with scarring and I assume both terms create/cause blockage and perhaps even functional damage to the epi. Regardless, the result is no sperm gets out.

Either way, while it’s therapeutic to speculate, it doesn’t matter. Docs won’t dig that deep to find out. I don’t even know if they can. All my scrotal ultrasounds have been normal. I’m getting one more to see if the left epi is enlarged but doubt we’ll see any changes. I think at some point they just say “we don’t know, let’s cut out the irritant.”

For me, epi removal is the worst option, worse than orchiectomy. Do you agree? If that, that takes us back to one of the two nerve surgeries, orchiectomy, or live with the pain and hope it fades away. I got lucky 10 years ago where Celebrex, Zyflamend, and Gabapentin got me back to pain free after 6 months, but that doesn’t seem to be in the cards this time despite trying just about any non-invasive effort.


#17

My answer the your first quote above would be dido on the second quote above, lol.

The distinction between blockage, scarring, and fibrosis? Hmm, in all honesty, that would take some time to put an answer together that I would feel comfortable posting on the internet as fact.

The fibrosis thing goes way back into the old school (pre this place). One of my long time, and shortly one of your mentors used to talk about, get into it, theorize, and speculate about it quite regularly.

Blockage is said to be the one of the leading causes of vasectomy reversal failure for fertility beyond scarring closed at the repair site/s. The leading other is likely poor technique, surgeon has a bad day, poor surgeon, etc.

We know scarring takes time. Fibrosis is likely related to scarring.


#18

Yes, I completely agree with that, but that’s not to be confused with it’s never helped a single man. I’ve seen it hurt far more men than I’ve seen it help.


#19

I bet we are talking about the same person who spoke and wrote extensively about fibrosis. If correct, I spoke with him briefly on Monday and am scheduled to talk with him next Monday. Wish he was as active on this forum as the prior one :wink:


#20

I can understand why he’s not a part of forums like this one. I totally understand.