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Spermatic Cord Denervation caused me permanent nerve damage


#1

Hello everyone,

So my story is a pretty sad one. In January of this year, I developed pain in my right testicle due to chronic epididymitis. The pain had gotten to the point where it was interferring with my daily activities, so I chose to seek medical help. I was ultimately referred to a urologist, who said that he could do a spermatic cord denervation procedure on me and make the pain go away completely. I wasn’t too keen on it, but he sold me on it and said “I’ve been doing this for 25 years, and I’ve never seen any guys not get better.” So I agreed to have the operation this past April 20. That was the day my life ended.

I have since developed horrific burning pain in my groin and an awful feeling of numbness along my inner thigh and up the side of my scrotum. I told the urologist about these symptoms when they started (about 2 weeks after the procedure), but he brushed me off and said that they were just normal post-surgical problems. The awful pain in my groin and thigh continued to get worse, to the point where I could not sleep. It was at that point that I realized that something had to be terribly wrong, and I chose to seek a second opinion.

I spoke to a pain management specialist who evaluated me, and gave me the bad news: I had sustained permanent nerve damage (genitofemoral neuralgia) as a result of the surgery. There is no cure for this condition, and I will need to be on nerve pain medication and pain meds for the rest of my life. I am in constant agony every single day and night now, far worse than anything that I had prior to denervation. I would give anything to go back in time and not have the operation. Quite simply put, it has ruined my life.

In the span of a few short months, I have gone from having a case of annoying but bearable chronic epididymitis, to having permanent genitofemoral neuralgia that will have me in pain and discomfort for the rest of my life. And as an added bonus, the surgery has caused me to have pain in the adjacent testicle now. Trusting my urologist and choosing to have the denervation was the worst choice I have ever made, and I would do anything to take it back.


#2

Words don’t even express how I and I think all of us feel for you.
To put it mildly that is shit news. I know you probably never even want to talk to a DR again but there could be a glimmer of hope.
I would for sure reach out to DR P, not to get anything done but maybe just touch base about all this.
Also I have read and maybe its a bit off time wise, but some potential new drugs, procedures, medicines for nerve pain. I think injured vets of the last decade or so has put more study and research into this.
Please remember just because a pain specialist says nothing they can do does not mean its true. I apologise if it sounds I am trying to promise rainbows and unicorns, I am not. But I would like to believe and or hope there is something out there to help you. Good luck and please know many of us on here know EXACTLY how you feel.


#3

Brother you are not alone. I have near constant pain up in my groin as well. It’s fairly unbearable. Mine is high in the groin and it is burning pain. I had a vasectomy reversal for pain and was fine for a time. I thought I was in the clear but something went south and my pain came back. I thing the interaction between a muscle spasticity condition and the scarring in my spermatic cord is why I have problems. How long ago did you get the denervation procedure?


#4

I had my denervation procedure on April 20. My symptoms started about two weeks after surgery. They have been unbearable. The urologist who operated on me won’t admit or acknowledge what is happening to me. He also didn’t discuss any potential complications with me prior to the operation. It didn’t have to be this way at all. I could have been pain free, but this Doctor inflicted genitofemoral neuralgia on me. Because of what he did to me, now I’ll never get out.


#5

Thanks Don. I actually did consult with Dr. P. He wants to do a cryoablation of the nerves to see if this helps. I’m not sure what to do at this point. I had a simple problem before, and it has been turned into permanent nerve damage. I’m pretty devastated at the prospect of dealing with this for the rest of my life.

I have also spoken to a physician at the Dellon Institutes for Peripheral Nerve Surgery, They are proposing a triple neurectomy. This is one possibility as well. But again, I don’t know what to do. It is completely unnecessary for me to be in the spot I’m in and I’m having trouble dealing with it.


#6

I had a consult with a local doctor here in Maryland named Eric Williams. He’s in Towson and focuses on relief of nerve pain. I am pretty sure he used to work at the Dellon institute. I hope you can get some relief. Please feel free to come here and vent.

While I don’t want to live the rest of my life in my current state of discomfort, fear of what’s behind door 2 has kept me from moving forward with any other procedures.


#7

@21tomlinson
Hey man i feel you. I went in in Dec and had the same result. After 10 days this incredible burning pain started on my left cord and my left testicle was shooting nerve pain into my left hip. Prior to I had a hyperetratle left testicle that occurrd a few times a week for a few min (most 15). I called the pur clinic and at their suggestion underwent denervation with dr b It was stated that out of a thousand only three were left worse after denervation. I just happened to be number four. Prior to the surgery i had issues several times a week now i am in pain everyday. I had reservations about the surgery but after the consult i was reassured this was the best way to proceed with my issue. I always wondered why it wasnt suggested to try botox first due to it being less invasive. The problem was better than what i deal with each da now… Dr b did a good job but i was taken back at the three week consult whrn i explained my issues he told me i couldnt expect to ever be 100% and to try to deal with it just get out and get on basically - It really took me back and then suggested they could do cyro. Another provedure with no real way to tell if i get worse. Now 8 months later i struggle daily. I also wish i would have walked away and on the table i almost did. I think the clinic is great for us but wish it would have suggested -time or nerve block or botox anything other denervation in hindsight But it was my chooce i just choose wrong. I dont blame them they were doing what they thought would help. Dr B at the time of surgery also said he wouldnt do anything he didnt think would help my issue. Im not angry because there was no way of knowing and thats why this forum is needed to show theres more than one side to each proceedure. Many get better some worse like us and need to continue to find solutions. I would use the pur clinic again because i believe they are tryong to help and listen to you even when procedures fail. I am sure they are disappointed when spmething doesn’t work for patients. Problem is i have to live with it daily. I hope you are early on and things get better. Over time my issues have settled a bit. I am still searching for complete relief and thonk at some poont I’ll find it.
Regatds Joe


#8

Sorry to hear that things didn’t work out for you either man. It’s a sad story. Testicle removal would have cured me, and I would be pain free right now. But I thought denervation would be a safe first step before going that route. My urologist didn’t discuss any complications with me, so I never saw this coming. If I had ever imagined that anything this horrible could result from that surgery, I would have stayed far away from it. Genitofemoral neuralgia is an awful condition, and it’s permanent and incurable.

It wasn’t supposed to be this way. It didn’t NEED to be this way. I could have gotten out of pain forever. Instead, I will be in pain forever. All because I trusted what a doctor told me. I am not coping with it very well and am thinking of taking the final way out. I hate saying that, but I really don’t see any other options.


#9

I can relate i think many of us have been alone and have had thoughts similar. Please reach out to me, or anyone here there maybe be help out there. I think there has to be something that can be done i know the desperation and want for relief. If you need to call me i will pm you my number even if its just to vent and point fingers i will listen. Please please dont take the last step you mention. Im sure you did this so you wouldnt have any more children so that means you gotta have one and thats worth getting to a level of pain you can live with. My prayers are with you.


#10

I’m sorry to hear of your situation. Chronic pain is AWFUL! I had denervation in January and I honestly don’t know if its helped or gotten worse. The last damn week has been pretty bad though. The denervation may have helped my abdominal pain but it has seemed to cause my balls to ache even more. i can’t wrap my head about what causes it and what doesn’t… Its just some days are bearable and other freaking suck, especially today. On Saturday I took a pain pill and I had a few hours of being relatively pain free. I commented to my wife “This is awesome”. Life is purely a damn struggle now, nothing is simple. My thoughts are constantly on my pain levels and it seems to consume my everyday life. Will it ever get better? I have no idea, but there doesn’t seem to be a light at the end of the tunnel for me currently.
My suggestion would be to talk with Dr. P and try something, don’t give up hope.


#11

I’ve had a reversal, denervation, cryotherapy and now Botox. Removal of your testicle would have been no different than a denervation, they cut the nerves just the same. 50% of testicle removal end up with phantom pain just like amputees so I wouldn’t say you made the wrong decision. There are a lot of us with weird symptoms from these problems, hell my leg muscles are atrophying due to the nerves being messed up but I have to keep going for my kids. What’s worse your kids growing up with a loving dad that’s not perfect or no dad at all. That’s the way I’ve been forced to look at it. Yes this sucks and no one blames you for being mad we all went in for a quick little snip where you should be good to go in 3-4 days and ended up with the shit were in. If your worried about cryoablayion it he nerves begin to grow back in 4-6 months so it has less chance of causing problems and Botox has less side effects. Personally the reversal eliminated my left side pain and the right side pain remained. 14 days of no pain after the denervation then pain returned on both sides. Cryo had no effect on me. The Botox is finally kicking in and having less pain overall, but the nerves still aren’t working right because muscles aren’t firing right. Hell my hips now pop in and out of the joints when walking and the nerves are so fd up my quads don’t fire when walking but I keep going on for my kids.


#12

Jesse,

How are you doing Jesse?

I saw this in a Google search and wanted to see how you were doing.

Mike


#13

Any update from the original poster? This sounds awful. I hope he’s doing better.


#14

I agree that I think there maybe more people with problems then are stated following denervation. If you are #4 then I hope I am included in those statistics as being worse after the procedure. I had intermittent pain which has now become chronic. The problem with any stats from anyone is how they are contrived. I felt better for the first 6 months then once the nerves grew back (which I was not told about as a possibility beforehand), I have had worse pain since. Upon a questionnaire I filled out 3 months and 6 months post surgery, they would have been favourable. Now 3 plus years out, I am devastated that I had the surgery…I so miss the time when I at least had periods of no pain.

Again this is why this forum is so important…it gives real experiences from people who have tried treatments without any bias. I must say I have become soooo skeptical of any stats from anyone. I was told less then 1/1000 chance of pain from vasectomy, 70% chance of improvement after vasectomy reversal and 85% of improvement after denervation…and it in then end I end of with chronic pain. All in all if you add it all up it seems impossible. But there I am on this forum with others who have the same outcome…it truly is devastating.

I do realize some people do get better with these treatments, that would not necessarily post on here, but I find it amazing to read people’s stories who have suffered the same as me and have probably been told the same things about how beneficial some of these treatments are.


#15

I appreciate you sharing your thoughts, and experience brother. My remaining pain post reversal/s is a lot like you describe before you had de-nervation. I have intermittent chronic pain primarily after I ejaculate, or if I ejaculate frequently. Other than that, I am somewhat normal. I have to keep medication on standby, and do a few other things to keep my PvP/s in check, but I drew the line years ago far as ever being totally pain free.

My pains have been all over the board through the course of my pvps. My main pain areas are left vas, left epi tail, left groin, left hip, left hamstring, left varicocele, prostate area, tail bone, etc. I dont have a simple case of pvps by any means.

I have followed the outcomes of many after this procedure. I have seen people rave, and post positive reviews for Dr X, and months later be posting in a pain forum saying they were in pain again, or it had switched up, or switched sides, etc.

I think many get caught up in trying to be completely pain free, and end up worse off. I encourage everyone to hold off on having multiple corrective procedures to close together. Far as all these statistics go, I’m with you on all that.

I have blazed my own trail through my PvP/s. Many doctors didn’t agree with what I did, or what I think. God knows where I would be at if I had done everything doctors told me I should do.

The smartest, and most wise advice I was given after I had my reversals, and a varicocele embolization procedure was, don’t have any more surgery/s. Give it much time, PT, etc, and you may improve. We are talking about years.

I wish I knew what to say, or had advice on what to do for those that suffer the consequences of de-nervation gone bad. Medication/s are my best guess, and perhaps in time, some doctor will come up with something that will help. I’m sorry to hear these story’s. I have read many of them over 7+ years. Not all done by one specific doctor either.


#16

When i had GF nerve blocks done here in Australia few weeks ago i was told buy the profesional surgon i am one of many they see from vasectomy pain. The procedure in Australia is done in private hospital by guided colour ultrasound so most times only our hospitals can do it with usually only 1 or 2 surgions that can do it in each major city. So with surgon saying i am one of many there goes theory of 1 in 1000.


#17

The 1 in 1000 is baloney. They all say that then when you go in and when you say you are in pain they deny that too. This is cognitive dissonance. They can’t reconcile the fact that a procedure that is part of their portfolio of product offerings and a nice stream of income can cause so much harm to a statistically significant portion of men. They can’t embrace that thought and keep performing the procedure in good faith. You are a threat to them and they minimize the damage because they see you as a threat. I truly believe they don’t believe it is a problem. Most men slink away, like I did.

I think we may need to start another site separate from this site where we list our provider names. I have been saying we need to do that here but this resource is too valuable to put in a position where some guy threatens to sue. I may contact the admin today and see if he can assist with this.


#18

I am the one who made this post, I just have a different screen name now.

Anyway, I am absolutely suing the urologist who did this to me. There isn’t a chance in hell I was going to let him tell me that this was a nothing procedure with zero potential for harm, and then do what he did. I’m hitting for the full amount of his insurance policy ($1 million.)

Of course, the lawsuit doesn’t really matter to me. All I really want is to have my life back. But this is out of the question now. I am not better. I never will be better. I will be stuck in this prison of agonizing pain for the rest of my life.

I wish I could go back in time and not let that monster take my life away from me with that fucking denervation procedure. But it happened, and I can’t change it.


#19

Jesse i am relieved your still here was worried about you man hang in there. Who did this procedure for you?


#20

Jesse,

Glad you are back. If you need any help of any kind just send an private message.

Mike