Health Organization for Pudendal Education

Thank you Vilote! I will share my experience with the group.

Hey Hope, I was just thinking and wondering -- did you already try blocks to the nerve roots at the L4/5 herniation and did it give you relief? You may have already posted this somewhere but I couldn't remember.

Violet

Yes, I had an L4/5 Block with just maricaine that gave me 30 hours of relief. I even had sex and everything was fine. I have more than just a herniated disc. I have annular tears and scoliosis. I didn't post about it because I was going to include it all in one. I'm sorry I haven't updated you Violet and everyone else. I have surgery June 27th 2018. If I forget to post please remind me.

Hope

Thanks so much for all your updates, Hope. You've helped a lot of us with your posts here and on fb (both to skip the amniotic allograft procedure and to consider our bad backs as a possible cause). In fact, it is because of your fb posts that I'm sending my MRIs around and getting a new one soon. I am definitely hoping that this pn mess is all due to my bad back.

April

Violet,

I have been puzzled by the very issue you asked Hope about. As I've been learning about the possible connection between lumbar herniations and pn, I've assumed the mechanism connecting the lumbar problems with the nerve at S2 was some kind of downward pressure from the lumbar area. If that is the mechanism, how does numbing the nerve that runs through L4/L5 relieve that pressure? Or, is pressure not the mechanism? If it's not, how does a problem at, say, L4/L5 affect a nerve at S2?

Thanks,
April

April,

Don't over complicate it. Whether the pressure is lateral or vertical is not relevant. The nerves that come out of S123 pass through L4/5 before they exit the spinal column into the dorsal ganglion roots. Starting at the highest level of the spine that indicates abnormalities per person is the where nerve blocks should start since things run down.

My search lead my doctor and I to believe the compression from L4/5 could be the cause since I have herniated, bulging discs, along with annular tears and scoliosis. Even though I have several Tarlov cyst they are the size of the top of a match head. My symptoms besides PGAD include burning of my thighs, back pain, and pain in my butt. A person with no obvious nerve entrapments or physical cause to include cysts should consider looking further away from the sacrum. Just because it hurts there doesn't mean it is stemming from that location. I hope this makes sense, but if I will ask my doctor to email me her theory.

Hope

April,

Thank you so much for your kind words and I am so happy my FB group is helping you and others. I am sorry I haven't been on FaceBook but I am almost done with the moving! I have surgery scheduled for June 27th and you know I will update everyone!

When I created the FB group I wasn't sure how it would turn out but now that I see it blossom I LOVE it! We all stay connected, learn and support each other!

Please let me know if your MRI images indicate any abnormalities after they are reviewed!

Wishing everyone pain free days,
Hope

Thanks, Hope! I do remember you explaining this to me on fb, and it sounds like problems higher up can always create problems lower down on the spine. That does make sense. I also have bulges and annular tears and what could be herniations, although I'm not sure. The radiologists didn't use the word "herniation" in their reports. My tarlov cysts are described as tiny, so I'm guessing they are not a causal factor. I'll let you know what I find out in the coming weeks.

Yes, the fb group is a wonderful way to stay connected and learn from each other. No worries about not being on there! Moving is all-consuming!

April

The theory makes sense to some extent. An orthopedic surgeon told me that they see MRI's that look quite normal but the person is in severe pain, while they also see MRI's that look quite bad and the person is not in severe pain. Giving a nerve block at the highest level of observed pathology on the MRI may or may not be diagnostic. It is only a somewhat useful tool.

One theory is that if you give a nerve block higher up it may relieve pain anywhere along the nerve distal to the block and if the pain is temporarily relieved, the pathology can be anywhere distal to the block. So suppose you gave a pudendal nerve block at Alcock's canal, then whatever is distal to that will be temporarily anesthetized, no matter where along the nerve the pathology is. Or if you gave a nerve block at the S2 and S3 nerve roots, anything distal, that comes off of S2 and 3, including some pudendal nerve fibers, would be anesthetized. If you achieve pain relief with that block, the pathology could be anywhere distal to that nerve block. My own thoughts are that it would be much easier to make a proper diagnosis if they could just target a precise area with a block and if you had pain relief from the block it would mean that precise area is where the pathology is. But it doesn't seem to be that easy to diagnose, and that's why we have so many patients still running around trying to figure out exactly what is wrong with them. So, then you have to ask why do the docs keep giving nerve blocks? I think maybe it at least gives them a rough idea that the pathology is somewhere distal to that block but they just don't always know precisely where. And then you have the problem of the medication that is injected wandering around to other nerves and you get such a large area numbed that you can't really get a proper diagnosis. Unfortunately, it's not an exact science.

Since you can't always get a 100% foolproof diagnosis, sometimes you just decide to try different treatment options to see what might work. So, I think it's at least a good sign that you had pain relief after the L4/5 block and hopefully your surgery will bring you permanent relief, Hope.

Violet

Violet,

I completely agree with you. Since every nerve block I have received technically worked for diagnostic purposes. My doctor wanted to go higher up where I had bad pathology and block it. Using nerve blocks as a source to depend on is not 100%. And since nerves run distal my doctor figured if a block at L4/5 stops my symptoms for 30 hrs without steroids that must mean something. If my pathology was normal in my Lumbar I don't think it would have ever been seen as a possible cause. I don't go into treatments/surgeries hopeful anymore. Instead I just hope it doesn't make me worse.

I've had 2 doctors so far tell me not to worry about my Tarlov cysts. But, since I want reassurance Dr. F is calling me July 30th.

Fingers crossed back surgery works!