Health Organization for Pudendal Education

Here's a description of spinal fusion surgery. https://www.mayoclinic.org/tests-proced ... c-20384523
Sounds invasive to me but that's just my take on it.

What part of the spine would be fused? The pudendal nerve comes off of S2,3,4 so logically it would make sense that any surgery close to that area could potentially cause a radiculopathy that would have similar symptoms to pudendal neuralgia but I could be wrong. That's a question for the surgeon -- who should tell you what the potential risks are.

Violet

While I have never actually been diagnosed with pudendal neuralgia or anything at all (minus like a hernia that I had surgery to fix,) the symptoms seemed, and to some extent still seem, similar. In fact, my primary/original pelvic floor therapist did not think I had pudendal neuralgia. Furthermore, I received little to no relief from the pudendal nerve block.

In hindsight, maybe the pelvic pain confused me. After removing a great deal of junk from my pelvis (IE: inguinal hernias, umbilical hernia, nerve entrapments wrapped around my spermatic cord, unobstructing my bladder neck) I don't really have pelvic pain anymore.

Without the pelvic pain, I almost think I have piriformis syndrome. Before any pudendal neuralgia-like symptoms presented them in my body, however, I was diagnosed with Spondylolisthesis. Basically, my L5/S1 disk is unstable and slips from time to time. This condition can cause "Pain, numbness or tingling in the thighs and buttocks." https://www.cedars-sinai.org/health-lib ... hesis.html.

Yesterday, I went to a back surgeon who told me my L5/S1 disk does not have much cushion left. I am going to see a pain management doctor to do an injection for piriformis syndrome. If it does not help me, I am seriously going to consider the back surgery.

These symptoms that sound like pudendal neuralgia or piriformis syndrome are the most frustrating thing ever. In my opinion and experience, most doctors treat me like a leper or accuse me of making it up. You, Violet, really are an excellent resource.

That's sad that your doctors aren't being supportive. I think sometimes they feel threatened when they can't figure something out. But I can sympathize with you as I think many people on this forum can. I remember how terrible I felt when a neurologist couldn't figure out a diagnosis and told me to go see a psychiatrist.

I would be interested to hear how your piriformis injection goes. I can't recall hearing from anyone on this forum who has had one before. Hopefully it will be helpful and you will be able to avoid a major back surgery!

Violet

Violet M wrote: ↑Sun Oct 08, 2023 7:16 am That's sad that your doctors aren't being supportive. I think sometimes they feel threatened when they can't figure something out. But I can sympathize with you as I think many people on this forum can. I remember how terrible I felt when a neurologist couldn't figure out a diagnosis and told me to go see a psychiatrist.

I would be interested to hear how your piriformis injection goes. I can't recall hearing from anyone on this forum who has had one before. Hopefully it will be helpful and you will be able to avoid a major back surgery!

Violet

I am excited to see how the piriformis injection goes as well and will certainly update via a post on this forum after my appointment this Friday!

If I get better, I am going to go to law school and try to get laws rewritten for people with PN, piriformis syndrome, or whatever it is called by medical professionals. I can testify that attempting to do mundane, daily tasks can be extremely challenging and exhausting for people with these conditions. At the very least, disabilities should be offered to people who cannot work due to these conditions.

When I was like 18, now 33, all the doctors suggested back surgery. Now, all the doctors suggest not having back surgery. I think there is a happy medium between the two, and I would certainly have back surgery if it could help my ilac crest pain. Back surgery is supposed to be best at stopping nerve pain, which is 100% my issue.

That said, however, I found an interesting article: https://www.osc-ortho.com/blog/is-my-sc ... is-muscle/

"The key difference [between spondylolisthesis and piriformis syndrome] when the piriformis muscle is involved, is that the patient will be extremely sore to the touch and may have swelling or muscle spasms in the affected buttock."

Since tenderness to the touch [to the point I cannot wear anything tight around my waist] is my major symptom, this is obviously of interest to me. Although I wish I could go to this doctor, I live in Texas while he practices medicine in Virginia.

Either way, I am in a weird situation because I had, and still have, spondylolisthesis the entire time I experienced PN/piriformis syndrome type symptoms. Maybe I have both issues? I am not really sure to be honest. Either way, I need to make a decision about back surgery soon.

From my research, conventional medicine seems to suggest that A. women suffer from piriformis syndrome more than men (conversely, men are more likely to have disc issues;) B. piriformis syndrome goes away on its own after several months; C. there is a decompression surgery for piriformis syndrome; has anyone ever done this surgery before?

I guess my piriformis syndrome/hip pain "goes away" but always comes back. I think my primary care doctor at the time confused piriformis syndrome for prostatitis when I went to him initially. Furthermore, I kept telling my pelvic floor therapists that "there was a spot that kept coming back, deep in my anal cavity where I could barley get to it." I think pelvic floor therapists help the symptoms of piriformis syndrome but don't really understand why.

Sorry to ramble, but I am hoping and praying for guidance. I hope someone on this forum can give it to me.

cwb125 wrote: ↑Wed Oct 11, 2023 12:11 pm I am excited to see how the piriformis injection goes as well and will certainly update via a post on this forum after my appointment this Friday!

If I get better, I am going to go to law school and try to get laws rewritten for people with PN, piriformis syndrome, or whatever it is called by medical professionals. I can testify that attempting to do mundane, daily tasks can be extremely challenging and exhausting for people with these conditions. At the very least, disabilities should be offered to people who cannot work due to these conditions.

Just wondering how your piriformis injection went.

There are many people who have gotten disability benefits for pudendal neuralgia. I expect if your problems are keeping you from working you should be able to get disability payments, but from what I've heard, they aren't very substantial - barely enough to live on.

I don't remember anyone on this forum every posting about decompression surgery for piriformis syndrome. Sorry, I can't give you any guidance on that but will say some prayers for you.

Violet

Violet M wrote: ↑Mon Oct 16, 2023 11:15 am

cwb125 wrote: ↑Wed Oct 11, 2023 12:11 pm I am excited to see how the piriformis injection goes as well and will certainly update via a post on this forum after my appointment this Friday!

If I get better, I am going to go to law school and try to get laws rewritten for people with PN, piriformis syndrome, or whatever it is called by medical professionals. I can testify that attempting to do mundane, daily tasks can be extremely challenging and exhausting for people with these conditions. At the very least, disabilities should be offered to people who cannot work due to these conditions.

Just wondering how your piriformis injection went.

There are many people who have gotten disability benefits for pudendal neuralgia. I expect if your problems are keeping you from working you should be able to get disability payments, but from what I've heard, they aren't very substantial - barely enough to live on.

I don't remember anyone on this forum every posting about decompression surgery for piriformis syndrome. Sorry, I can't give you any guidance on that but will say some prayers for you.

Violet

Sorry to leave you hanging but a lot happened in my life the last few months.

The doctor that did the Piriformis Syndrome was a pain management doctor and made me go to FOUR Appointments (plus do an epidermal in my back, which I told him would not work) before doing the PS block, which is the only reason I wanted to see him in the first place.

I had a lot of success with the block because I felt....energized afterwards. While I could feel the pain, the numbing effect of the shot sort of offset the pain for about a week.

Due to this, I reached out to a doctor who treats Piriformis Syndrome in Houston, TX. Although his name has been floated on this board before, he is not listed as a doctor on the following website: https://www.pudendalhope.info/united-st ... icians/#TX

That doctor ordered an MRI Neurography Pelvis w/out Contrast and an General EMG of the Nerves. My expectations for the EMG were low because I had it done when all this first started almost a decade ago. I really hoped, however, the MRI Neurography Pelvis w/out Contrast would show something. I got the results back and neither showed anything other than ""Motor latencies, amplitudes and velocities are normal, except slight decrease CMAP for the left peroneal nerve."

I am going back to see this same doctor in two weeks. Hopefully, there is another way to diagnosis Piriformis Syndrome. Otherwise, I may have to pull the trigger on back surgery.

Boy, do I have a lot to tell the forum.

A. Please see this post - viewtopic.php?t=11382. I made it in between updates and will reference it in this post.

I went and saw a doctor, Dr. Anthony Echo, that treats piriformis syndrome in Houston, TX. Before going into the appointment, I was leaning towards having back surgery if he could not help me.

He was both an intelligent doctor and a very nice man.

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He gave me four choices:

1. Do nothing.

2. Be referred to a doctor for pudendal neuralgia around Houston. I really need to get that doctor's name, but Dr. Echo said this doctor was in Sugarland, TX, which is a suburb to the west of Houston.

3. Perform the piriformis syndrome surgery.

4. Try a Botox injection in/around my piriformis muscle to see if that helps. If it does, then I could decide if that is a solution or if I still want to try the surgery afterwards. Furthermore, a successful Botox injection would support the conclusion of piriformis syndrome.

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I think I am going to choose either #3 or #4.

#1 is unacceptable for obvious reasons.

As far as #2, I do not think I have pudendal neuralgia because of the way my pelvic pain improved after removal of several hernias and years of pelvic floor therapy. But for those hernias and inflamed pelvic floor, I am not sure I would have ever thought I had pudendal neuralgia. Furthermore, a doctor tried a pudendal nerve block in the past with little to no effect. I am also very skeptical of the PNE surgery.

Does anyone have any opinions on Botox injections? Do they help anyone? Or, should I look at it more as a diagnostic tool? Or, should I go for the surgery?

Has anyone had the piriformis syndrome surgery before? If so, was it successful? How well did you recover from it? Even though it sounds tough, the literature about it seems positive.

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Overall, I am thrilled with this outcome!

Glad you’ve narrowed down your options and understand them. I’ve only heard 1 surgical testimonial (from a trusted source, I spoke to them) and they did not have good things to say about him.

Obviously that’s just one testimonial but just wanted to see what patient testimonials you have heard of Dr. Echo? I’m in Texas as well so would love to hear more. Did he tell you how many piriformis/PN surgeries he’s done?

Also I believe the PN doctor (neurologist) he’s referring to is Dr. Charles Popeney (he’s in Sugarland and is known to treat PN - I’ve seen him as well). The other known PN doctor (pain medicine) is Dr. Ioannis Skaribas (he’s excellent if you need any injections/blocks).

Thanks for sharing all this new info!

Thanks for responding as well!

Looking at reviews for Dr. Echo is a good idea. I know he has positive reviews on his own website but could be cherry picking them.

I do not think, however, I would switch doctors as he is the only one in Texas. It seems like this is a doctor in Nevada, named Tim Tollestrup, that is cited a lot in literature.

To me, having surgery in another state might do more harm than the skill difference of two doctors. I have some experience with this as I went to California because I thought I had a sports hernia. While that doctor did a great job, the trip back was very tough on my body.

Did either of those PN doctors help you any? I remember it seemed like all the Texas PN doctors tried to make it more bearable through management than fix it via surgery. Although I am still hoping to fully recover at this time, I'm glad to know they are there.

Then again, my bubble bath recipe calms all those nerves down!

Understood the reservations about traveling, but PN surgery is a very rare surgery worldwide. I would guess Dr. Echo is only doing these a couple times a month, if that. I would absolutely ask him this to see his volume. You want a surgeon who is doing 1-3 PN surgeries every week on average for years and years. If he’s only doing it once or twice a month, I’d really really really really (cannot emphasize this enough) reconsider.

Dr. Echo is a neurosurgeon so he’s operating on many parts of the body. Those surgeries are much much much more common than PN so double check exactly where all those reviews come from. For example I wouldn’t be surprised if out of 100 reviews he gets, only 1 was even related to a PN surgery and the rest are the more typical hand, knee, foot etc. procedures

I’m just drawing up some cautions to think about. I don’t know much about Dr. Echo beyond 1 negative patient testimonial, but we also don’t have many Internet testimonials or even PN literature/videos from him so some skepticism is warranted.

For Dr. Popeney and Dr. Skaribas - they don’t do surgeries. Popeney can help with medications and EMG testing and assist in navigating with other physicians. Skaribas is excellent for any nerve block or injection you want to try. Beyond that, they can’t help more than that