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Just got a GF block from Johns Hopkins


#1

It is helping. I am feeling pretty good today. I will follow up with this provider in 2 weeks.

He wants me to take Lyrica as well which I am not crazy about but I agreed because he stressed that we need to follow a plan and stick with it. I think I have tried Lyrica before and dropped it. I feel like the anticonvulsants gabapentin and lyrica have some tradeoffs and tend to lose efficacy. I’m already a space cadet and having problems with concentration and cognition. I’m going to do it though.

There is some numbness in my groin and scrotal area but the pain is subdued in a way that feels good. It’s not gone but subdued. I will take that.


#2

@MikeO did the GF block seem to help your Inguinal pain when sitting?


#3

Mike - that’s great news. The other thing I worry about with us dealing with this long-term is the centralization. If you can still get relief from a block, I believe that’s an indicator the pain is still localized and not centralized in the spinal cord. Again, I emphasize I THINK.

Were you sedated during the block? It’s weird, but all the blocks I had (for PVP) through the Cleveland Clinic were under sedation. My back problems were treated at a different hospital system, and they did my epidural steroidal injections without sedation, just started with a local anesthetic and then the steroid injections. Some hurt like hell, and I probably should’ve opted for sedation since it was offered. Cleveland Clinic hooks you up to an IV for a block or ablation and gives you sedation through IV.

Again, great to hear you’re getting relief. I’m tired of being a veteran.


#4

@worriedwife1, It helped me sitting yesterday but things still felt not normal. It just didn’t drive me crazy like it can. That nerve is definitely part of my problem. I dont’ understand how they think you can rip a guys vas deferens out through a small slit in that area and not cause issues. On me Robert Sher cut me high up and so close to the base of my penis. It wasn’t really in my scrotum. There is scar tissue there and it can hurt there. The block helped. I still had pain like @raising4girls kind of below as well but it is manageable.


#5

I was not sedated. It was done by feel, no guidance but it did help me a lot. I was in a lot of pain this morning but that has been normal for me lately.

I feel like if I can calm the nerves and muscles around that part of my body it will eliminate a lot of my pain. It’s like the crease there, and down under the cord where the pudendal nerve passes over the sit bone up through the inguinal region is not right. It’s tight, sore, it burns. Kind of feels like stabbing sometimes. Hard to explain but I think you know what I mean. The entire area is fucked up. My doctor does not seem to be interested in ablation though. He did not answer my questions about it. I think he wants to be in control. I asked if he had guys with chronic groin pain like me and he said some hernia surgery guys. I like him better today after that visit but am a little frustrated too.

I feel like someting is trapped or being strangled down there. I am not sure what or where. I don’t think it’s an inguinal hernia though.


#6

I just got another block today. It is helping a lot. Makes me wonder what my next move should be. I am planning on seeing Dr. P in March for a botox block. I know beyond a doubt that I have GF neuralgia. I can feel the scars and they are a huge part of my discomfort/pain. I have not thought much about my pain today which is good. Sitting feels okay which is great. Like @raising4girls I feel like I have some pudendal involvement too but one thing at a time.


#7

Great news, I think, not that you have GF neuralgia but that you’re closing in on a root cause and that you’re getting relief. Couple of questions:

Was it an in-office block or more procedural under sedation? Anesthetic with or without steroid?

I’m with you in spirit and diagnosis. In recent weeks, I’ve come to believe I’m chasing 2 ghosts, 1 the GF and 1 pudendal.

Any reason you didn’t go back to Williams? I’m back on that train and thinking about seeing him again.


#8

It was in office with no sedation. No guidance either. Other than him pressing down with his finger about where he thought it was . It helped a lot. No steroids.


#9

Interesting. @acschiro has stated (I paraphrasing) that sedation or being under general helps prevent nerve damage from a block but also masks the local anesthetic. In other words, the short-term pain relief could be from the sedation or general anesthesia rather than the local. I’ve wondered about that myself and am thinking I should go see Williams and have him test my II and GF in his office. If they solve pain, then have him do a neurectomy as I like his/that approach better than SCD. And, if it doesn’t work, then I could see his partner Dellon for what would then likely be pudendal. Truthfully, I think I have some of each.

If you’re getting good and long-term relief from the GF block without a steroid, I think that’s a good sign you found a culprit.


#10

The relief is not long term but it is a nice break. It makes it very manageable. I am going to relay this to Parekattil and see what he thinks. I’m still going down to see him in March and getting a block plus botox. I am less worried about nerve damage if they are shooting me way above the damaged/scarred area. It’s a needle and it seems like it would be really hard to damage a nerve.


#11

Agree with you. Every day that’s lower pain or pain free IS a nice break. Changes my whole outlook on life, work, etc.

I think the risk of nerve damage from needles is far less than a scalpel. I think Dr. P. will tell you you’re a good candidate for denervation. I think their whole think is “if block works then nerve is problem, take it out.” For me, the question is whether to have a urologist like Dr. P. do the denervation or a surgeon like Williams take it out. At the moment, I prefer the Williams approach (neurectomy vs. SCD).

I’m heading to Florida for Spring Break with the wife and 2 of the 4 daughters. We’re headed to the Clearwater area, and I may schedule a side trip to Orlando for a block. When are you heading down there?


#12

Sorry to add my two cents, but I think their whole think is, if the block worked, you are a good candidate for de-nervation, no matter the thoughts, and/or cause for your pain. And, they certainly don’t “take it out”, they sever it, and then some, and hope for the best.

Most all versions of de-nervation success rates hover around 85%~, but as many of us veterans know, we certainly haven’t seen 85% of men, teens, etc post success with the procedure.

I’ve been reading these forums since 2010, and I certainly haven’t seen anything close to 85%~ success rates among people that openly post their stories. I’m speaking of guys that were posting before hand as well.

These nerves have a tendency to grow back, and/or become more angry afterwards, both short term, and long term.

Seems we’ve talked about urology regarding de-nervation. The good ole “hammer, and the nail” saying comes to mind.

All of the conditions, complications, etc that many men have in their genital area post vasectomy, sports injuries, hernia pain/complications, etc, etc is the “nail”. Urology has the “hammer”, and its de-nervation.


#13

I agree on the skepticism about spermatic cord denervation. Certainly, our forum has bias in that men who get cured tend to leave for long periods if not permanently, but, still, you’d think we’d hear of more positive stories.

@acschiro seems to favor removal (re-sectioning) of the GF and/or II via neurectomy rather than SCD. Paraphrasing him, he says SCD by urologists is like trying to take down a tree by cutting the branches and leaves whereas the peripheral nerve surgeons go at the tree’s trunk. Seems like a fair metaphor.


#14

We will be down in Orlando the third week in March or so. My daughter made a special swim meet and we’re taking her down and I’m getting a block on the first day. I decide to try the botox because I have a little bit of spasticity too. I’m not all that hopeful that it will do anything dramatic but who knows right? I really don’t understand why if a genito femoral nerve block helps me why it shouldn’t be a slam dunk to just get it taken care of. I really don’t think my body would react well to spermatic cord denervation and I’m not interested at all and having that done. Seems to me like there’s a minimally invasive way or a direct way to take care of that nerve without f****** with my ball cord any more.


#15

So I just went back for another follow-up with the guy that gave me the injection. I’ve been out there four or five times now. The guy seems to be surprised that the nerve block he’s giving me doesn’t provide me any relief beyond the one day or so when the local anesthetic is working. He’s shaping up to be another in a line of disappointing clueless physicians.

I think I made the mistake of kind of blowing up on the guy during the first visit. After that visit he is really kind of over the top with stating the risks of nerve blocks and just very over cautious. I think I made the mistake of telling him I’m sick of going to guys and not getting relief but also not getting a diagnosis. He is now overcautious that I am going to sue him or something or that I am trying to manipulate him. The first assessment visit he was just being really annoying and about 1000 miles from where I needed him to be. He was like a robot. This guy is not someone that will ever recommend any kind of surgical procedure even if it’s warranted I’m afraid. I think he’s one of those guys whose mommy patted him on the head to many times as a boy because he really seems like he wants to be the smartest guy in the room and dictating my therapy rather than doing anything collaborative where my feedback is anything more than “ignorant slob with pain problem and I know what’s best”.

I have not picked up the lyrica. I just feel bad making my insurance pay a shitload for a drug that probably won’t work for me. I have tried lyrica before. I was taking gabapentin but stopped last week and my pain got no worse i do feel clearer headed. Those drugs poop out quick, make you ravenous, and make you loopy.


#16

Which doctor did you see?


#17

@MikeO - sorry to hear, but it’s the challenge we have. Let’s try and talk over the weekend or next week. I’m running up against a similar challenge. Saw Pain Management today and he’s effectively admitted he’s fired all of his bullets. He wanted to take a step back on see if my lower back is the root cause but admitted it’s unlikely. Also said it would be a headache because insurance would most likely make me first go through a round of PT. I suggested that since I’m getting some but not enough relief from the ablation to try to see if meds would help. Gave me a script for Lyrica.

Let’s compare notes.


#18

Sounds good. I don’t want to be too hard on this guy but he is just kind of meh. I imagine they get a lot of junkies and difgicult types in pain management and just get jaded. I have never asked for pain medication. I don’t think it’s too much to expect a diagnosis though.