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Spermatic Cord Denervation caused me permanent nerve damage


#41

Are we (SADLY) learning at the expense of some forum members that spermatic cord denervation is worse than vasectomy? Or, put another way, does SCD have worse odds of helping a PVP sufferer than the odds of a person initially contracting PVP from the vasectomy?

Seems like we’re not seeing many success stories with SCD. Could be sample bias in that those it helps move on with their lives. I know that I participated 95% less often during my “remission” periods between relapses since 2005. I do think the uros who perform SCD are sincere in their belief that it can and does work, but perhaps, as with vasectomy, they pick their statistics to help them sell the procedure as safe.


#42

@raising4girls, I will go with my gut and speak my mind about this. If SCD was so successful in so many cases, I should’ve seen countless stories about how successful the procedure was by countless individuals over the last 7+ years. It’s been a rarity to see a guy in a pain forum have SCD, and report success. I’m just not seeing it, and I don’t care what dr so and so’s website says, nor their Facebook page.


#43

Yeah its ironic how the procedure that is sold as the least invasive because it doesnt go into the scrotum can have the most debilitating risks associated with it. I remember Dr. Marks saying that reversal is the only restorative procedure whereas denervation and other surgeries damage the organ in order to relieve pain which doesnt make since. He was saying if the problem is in the scrotum simply damaging the cord through denervation will not work in most cases cause the body will figure out a way to communicate the scrotal pain to the brain one way or another. This is also why i think orchiectomy is safer than denervation. It makes more sense to remove the organ entirely through orchiectomy than to leave a damaged organ in place with denervation.


#44

So what does everyone else do? Pain management I assume? Trying to find medications strong enough to work, but not so strong that you can’t function? Has anyone else had success with nerve blocks? I just had my first ilioinguinal/iliohypogastric peripheral nerve block the other day. So far it just feel like a bad cramp in my groin from the injection. I know you all love hearing these statistics…the Dr. told me that these nerve blocks work 70% of the time. I’m hoping for the best, but seems like every time a Dr. gives me a statistic like that, I end up being one of the few that has no benefit, or in the case of the SCD, end up worse off. I was never the type to have all kinds of problems. I’m 39 and before my vasectomy a few years ago, I was a healthy and fairly active guy. Now I try to avoid doing anything that is going to make the pain worse. Mine is tender to the touch in the area where the incision from the SCD was done. Then it gets much worse if I do a lot of walking, or stairs, or anything using my legs. Doesn’t hurt when I’m doing the walking or the stairs, but a few hours later it gets really bad. Like burning and shooting pain. Anyone else experience this?


#45

Getting your pain under control is critical to your survival. Sounds like you are on the right path far as trying to get off opiates, and find something/s that works that’s not going to make you worse, and/or create bigger problems in the long run.


#46

I am fairly new on this forum only 10 months or so but i have read a lot here and researched lots in my sleepless nights in agony to try make best choice for me. All i can say is why do SCD when you have so many options. Maybe try SCD at end of the road. But i have read so many horror stories on SCD it would be my last choice simple as that.


#47

Yes, while I’m walking, I actually feel pretty good. Standing for extended periods hurts.


#48

I have a little bit of medical knowledge as a Paramedic and I do plenty of web research especially on procedures that I’m looking at having done myself. However, when it comes to things that leave my urologist and other dr’s scratching their heads, and they send me to a specialist like Dr. P who is one of the only specialist doing those procedures…I tend to listen to them and rely on their advice and logic. I have to say that the way it was presented to me…Denervation was a very good solution to my testicular pain with a high rate of success. Especially since the diagnostic “mega” cord block worked the way that the Dr anticipated. I never considered the possibility that the procedure would leave me in worse pain in a different location. The denervation did stop the testicular pain, but 6 months later I was having terrible nerve pain in my groin area where the incision for the denervation was done. One of the most frustrating parts to me was that the likelihood of my symptoms seemed so slim that it seemed like I was inventing them. Dr’s didn’t understand why I was having pain, so it seemed that it was hard to believe. I definitely wasn’t making it up. I’m rambling, but the pain is bad and the chronic pain is a complete mind f***.


#49

Thank you for posting your experience. Im so sorry your going through this. It is odd that if the stats are correct of the thousands of men who have supposedly had pain resolution with denervation you would think at least a handful would post positive testimonies on this site whoch im sure most pvp guys are aware of and have visited this site. Strange.


#50

It was the same way on the site before this one. I don’t consider it to be a sample bias either. I’ve seen many go for it, and very very few came back reporting all good. Majority seemed to be a wash, worse, switched sides, other side effects, incision pain, etc, etc.


#51

Will all those who benefited from SCD please step up and be counted?


#52

I 2nd this. seems to be recommended by some Urologists. would be really nice to hear some success stories here.


#53

I had left groin neurolysis performed by Dr B. It solved my nerve related PVPS on the left (worst side) and the nerve pain that was starting to radiate down my left leg. My ghost pains disappeared. However, I lost quite a bit of sensation in my left groin, left side of sack, and upper inner thigh area. That sensation never returned and surprised Dr B. The incision site still hurts and any significant pressure at that location really hurts.


#54

@slowrain,

Would you say it was a net positive? Would you do it again knowing the tradeoffs?

Thanks,
Mike


#55

It was the second out of three corrective surgeries. In hindsight, I should have had a reversal first before trying anything else (for all of the reasons we’ve worked through on this forum: scar tissue clean up, congestion, etc.), but that wasn’t an option at the time. However if I was experiencing exactly the same path again with events unfolding the same way - time machine to post vasectomy, I would do the neurolysis again without question. It really helped clear a lot of my unrelenting horrible 8/10 pain and allowed me to focus on fixing the rest of the problems. It wasn’t perfect, but I had to figure out the next step and the pain was preventing that. I felt, that gut intuitive feeling, that the neurolysis would prevent the progression of nerve pain down my leg, and I also intuitively knew that I would trade some feeling in the exact areas I mentioned (despite Dr B stating otherwise). However, I wasn’t expecting the new pain at the incision site below the surface. For me, it was a net positive in that it achieved what I thought it would with the expected negatives and gave me a pain reset until the until the congestive pain took everything to a higher level over the next 1-1/2 years.


#56

I need to add that I don’t feel neurolysis is a “go to” solution for PVPS. When PVPS strikes, men need to understand the seriousness and potential permanence of this, stop caring whether or not they are fertile, and back out with a reversal. At that point, they can pursue nut removal or neurolysis. If the PVPS is mild, I would never consider neurolysis.


#57

Hello @chronic_nerve_pain and anyone who is interested in the subject of how do we live a semi pain free life now …as I “have” to be. This is a very interesting thread and I felt that your question on pain management to be a very pertinant and relative subtopic to the main thread. So I felt I should add what I believe that I have learned because I’m not sure this is as much a question of a danger of the class of drug as it is the way in which the policy is carried out. I was able to lower my dose and stay there for several years and not need more and more as the current propoganda states.
I was almost the same age as you when my life drastically changed for the “worse”. I was very active and life was good! But now almost 25 years later I am also leary of doing anything that might make it worse (or set it off), as the case may be. No heavy lifting, running, tennis etc. I have tried many many types of pain killers/ reducers suggested by doctors that may mean well but they do not understand this type of pain or the pain killers that they are writing prescriptions for. I don’t totally understand this pain and I have it! But I do know what works for me!
The thing about Opiates is that they “consistently WORK”…for me. And regretfully that is something that preocupies my decision process. And they are the “Only” thing that consistently works. There are days that it does not work as well as others but I did “not” keep going “up” in dose to get them to work…as the “country wide” propaganda says that I would…mabe I’m unique here…but I don’t think so.
The catch 22 (and your decision to use opiates, I guess) is that the current “Opiate War” is against “ALL” people who use opiates in the U.S. and it "does not seem to discriminate wether you have been going up or down in dose or not! I am uncertain and concerned (and a bit angry) because I could have eaisily taken the larger amount the pain doctor was first giving me, and I could have squirled away PLENTY so that I wouldn’t have to be concerned if I will or won’t have enough to last me because of some arbitrary drug policy decision or prejudice. I believe they are starting from a false premiss, which is, that all people that take Opiates are risking their life, and they are also dope fiends who are taking them to get super high. While this may be true for maybe 1/3 of the opiate using population I believe that our current fast paced, get an operation for anything that you want world has created a class of people that truely need to cure pain. So what is one to do? I want to be honest and show the doctor that I am trying to take the minimum, but if they are going to be dishonest and pull these hasty policy acts on the whole population what is an HONEST person to do?
They lied to me about the amount of people who have pain from this “proceedure” called a vasectomy, they lied about the degree to which this pain could mess up a persons life and their ability to function, and they lied about the ease of which I could have it reversed ( I have read articles that they knew this caused big problems for many as far back as the early 1900s’!).
I have tried Gabapentin and Lyrica but they made me so dizzy and uncoordinated that I injured myself several times (and by the way these are aparently also addictive). I use a small amount of Gabapentin when my known dose of opiates does not seem to be working completely or when I want to sleep. I’ve tried antidepressants, that were supposed to kill pain…but they only made me suicidal (honestly). As i tried to tell people and the doctors…i’m not in pain because I’m depressed…I appear depressed because because I’m in pain! And by the way…antidepressants are also addictive! I resent being treated like a drug addict because someone messed me up and allowed an operation to proliferate that can cause severe pain at the 1 to 2% plus level and not the .001 or .005 level which is the standard that used to exist for wether or not a proceedure was to be considered for even further testing on the public or not. I was one of the unlucky 1 or 2 in “100” that get the sentance of chronic pain for the REST OF MY LIFE! And I resent that they are lieing to me now (again) that the reason that the Opiates are so dangerous is because they are addictive or they kill people. There are many things worse …like cigarets, alcohol, and people driving under the influence of barbituates and alcohol. Etc etc.
Addiction is not good I agree. Methadone addiction is one of the hardest to get off of but methadone is one of the best drugs for this PVPS pain! It allows your head to remain somewhat clear and it kills your pain very well. But they won’t give you methadone because it is inexpensive (they make little proffit on it) and regretfully a few foolish people thought that they could get really high if they took a bunch of it. They would rather write perscriptions for these insanely overpriced pain killers that we are being forced to buy to stop this relentless pain if we get any pain killers as it is.
I better stop here because I will sound like I’m ranting. Maybe I already do. And i apologise for that but I could write for hours on this subject. By the way my pain regimine is to first use Adivil 600 mg then 7 to 15 mg oxycodone and then 100 mg of gabapentin if the oxycodone doesn’t cure the pain. Good luck …and i hope a truthful solution is soon found so we don’t have to ever use drugs for chronic pain…ever again!


#58

Hello @rc009 Subutex is very fast to attack pain (that’s the good thing) but also “very” expensive now. I used it to get off of the methadone from my first major flare up of PVPS. It may work for you if you need a small amount of Opiate along with your Lyrica or something like that. So if your insurance lets you switch drugs eaisily (unlike mine) i’d say give it a try. But be careful…a lot of doctors don’t understand it’s odd way in which it works, my doctor gave me enough for a major heroine addict (3 x 8 mg) per day when i needed more like (2 mg 2 to 3 times a day) and my wife and I almost ended up in a divorce! Good luck!


#59

@IamHurtin There is definitely an opioid crisis in the USA. The problem has been developing for a long time because of over prescribing, dependence, lack of alternatives, pharmaceutical company deception, etc, etc, ect. However, I wouldn’t concern yourself to much about wether they will stop prescribing them to you. If you find a pain doc who you like/trust and who is willing to work with you, you will still be able to get them. It’s definitely going to be harder and require more patience on your part. But, that being said, opioids should be hard to get. They are drugs that work but they have a ton of cons and shouldn’t be given out without proper discussions between you and your physician. They are going to want you to try other options such as anti depressants, but it sounds like you’ve given them an honest try so any good pain doc will work with you. Sorry you are here man. Hopefully you find an honest physician to help you out.


#60

Hello @Kyvas…I believe that you are right. To a point. But even though my pain doctor is very understanding he is being leaned on by the federal government to try to get people to cut back or stop, and it is sad because he really seems to be under a lot of pressure to do so. He is suggesting suboxone to me when 4 months ago he clearly told be that he didn’t think it could kill my pain. Suboxone has now risen to $550 for a one month supply of 2mg 3 times a day! There is clearly a lot of greed in our system. And there is clearly a big problem on the street. I’m concerned it will drive more and more young pain patients to the streets. He has also been given new guidlines where he said that he could give me 10mg of methadone 3 times a day 4 months ago to now he wouldn’t be able to give me more than 2 a day. And he also says that I need to be regularly seeing a Urologist pretty soon or he will have to be stepping down my medication. I am petrified of urologists at this point. They are the ones that caused this problem. And my pain doctor used to understand…he now has so many stipulations put upon him that he is clearly under a lot of stress all of a sudden. There is clearly an adviserial role the government is taking here. They are not letting doctors control the process…they are controlling the doctors. Yes there is a problem. But the strong arm way in which they are going about it doe not seem to be a good solution. IMHO. I hope that you are right and I am over reacting. Thanks for your input.