Pudendal Neuralgia from the Spine

[Violet M]

Hi Skip,

Hope you continue to feel better!

Violet

[egley]

Hi April,

Unfortunately, I forgot to check the box to notify me of replies and just now noticed this.

I get my Tercumin from Costco. I don't know if contains circumin and I can't go look at the moment.
They are 1000 mg capsules. I believe that is significantly higher than others.
My stomach has now grown accustomed to them. At first I would get stomach aches, which is common from what I read on the web.
Some people claimed it was due to black pepper which some manufacturers added.
I don't know if the Costco brand has pepper.

I get the same differing opinions on whether spondylolisthesis could cause PN.
One ortho and one spine physiatrist thought it was a possibility.
The ortho that did my surgery said pretty emphatically that it was impossible because the pudendal nerve has not branched off yet where my fusion was (L2/L3).

I am right now lookin at the genitofemoral nerve at: https://www.healthline.com/human-body-m ... al-nerve#1
You can remove layers and see how it is placed in the body.
This new doctor at the pain clinic said that appendectomies could cause damage to this nerve and cause pelvic pain.
My appendectomy was when I was 4 yrs old so it seems I would have had symptoms a very long time ago.
But geesh, when I look at the genitofemoral nerve, it is exactly where I feel pain when it is really bad.
Also, from what I see there it appears to me this nerve comes out around L2/L3.

Who knows...
I'm hoping I can see this new doctor at the pain clinic. I have to go through a screening first; hopefully whey will just shuffle me off to her since pelvic pain is her specialty.

Cheers!
Skip

[egley]

Thanks Violet!

I will post here again after I get some feedback from the pain clinic.
Probably will be a while. They move very slowly.

Skip

[April]

Thanks, Skip. I googled the curcumin tablet and found it on Amazon and other places. The bottle says it's a tumeric extract (the spice my pt recommended), so I may give it a try. Thanks for the info on your stomach. I may start with only a portion of tablet.

If your pain follows the genitofemoral nerve *and* your back surgery was on the lumbar area where it comes out, I bet that is where your problem is. It may be that you irritated it as an adult and that activated an injury to that nerve from your childhood appendectomy. Good luck with the new clinic.

April

[AAB]

Hi Skip-

The doctor you are seeing in the video is Dr. Jennifer Hah. She is my doctor. I just started to see her even though I have been a patient at the pain clinic for 4 years years. Dr. Hah only sees patients 2 days a week. The rest of the time she does research, this I am told from 2 of the other doctors. You can ask for her specifically. If may be worth the wait. She has 4 diagnostic tests scheduled for me. I am told she is very good.

I too have some crazy spinal issues. Until now, they have not been a concern for the doctors. I hope Dr. Hah will put some thought and energy into it.

I hope you get the help you need and feel better.

Michele

[egley]

Thanks so much Michele for your addition.

I spent about a year going round and round with different "fellows in training" in the Stanford pain clinic back around 2005.
After one year, I was finally seen by Dr. Mackey and he sent me to a pelvic floor PT immediately.
Although I was glad that someone had a clue as to what was wrong and to get 'some' relief, I quickly realized it was just a quick fix and the relief only lasted hours.
My last dealing with the pain clinic was a 'radio-frequency ablation' (I realize ablation is the wrong word but that's the one they used) which made no difference whatsoever. But I don't think they hit my pudendal nerve. I was repeatedly asked to tell them when I 'felt it' in my testicle. It never happened. They seemed to grow impatient and just turned up the voltage to do the 'ablation' and get me out of there. I suppose the room (not quite an operating room but still rather sophisticated) cost too much to spend a lot of time in there. By this time I had found Dr. Weiss (in San Francisco) from these forums (or perhaps the predecessor tipna) and quit going to the pain clinic.


I requested Dr. Hah when making the appt. but was told it was not possible. I had to do a screening or something like that.
I understand the need to train these fellows, but I am not going to be so patient this time.
A year on that merry-go-round is way too much to expect.
I'm much more educated about this malady than I was back then.
If they stick me back on that merry-go-round with the fellows, I will come to the conclusion that they really don't have any more to offer than what I was given back in 2005, and quit going.
I've made many lifestyle changes since 2005 and am at a place where I feel 'comfortable', and avoiding a lot of frustration is one of the things highest on my list.

Could you keep me apprised of your progress with Dr. Hah?
I would soooo much appreciate it!

Thanks!
Skip

[AAB]

Skip-

I hear you about that "merry-go-round" of fellows. I was able to skirt around that b/c I stuck with one doctor for 4 years. (Although he was not that knowledgeable about PN or pelvic floor). It was very crystal-clear to him I would not allow a fellow to do any work on me. There was one fellow I trusted, and he is now on staff there at the pain clinic.

I just wonder-- have you tried to have your PCP refer you directly to Dr. Hah? I'm not sure what they meant about a screening process, but it might be worth getting your PCP involved. The PCP should be able to find out what this screening thing is about.

I think b/c I was referred to Dr. Hah by the chief of staff at the pain clinic is probably why I was able to see her. He also assigned me a social worker to help me through the merry-go-round. (This only happened b/c I yelled at him one to many times. LOL) It still took 2 months before I could see her.

Also curious- the PFPT that you saw, were her initials KW? If so, she is the one I see now. She quit and opened her own PT. She does more that PFPT on me. Just recently, we have discovered my problem is more than just the pelvic floor. So now she is working on many other areas that are connected to the pelvic floor. In fact, she mentioned the ilioinguinal nerve. I had no idea how far up the body it originates from. And that it might be trapped in my hernia mesh. Something I will mention to Dr. Hah. KW is very knowledgeable about anatomy and always has an answer to my questions and is focused on finding the root of this mess.

One more thing.......when you mentioned you are more educated on this malady........... I had that conversation with my pain doc and Dr. Hah. I told them that....NO oNE should be messing with this situation unless they have experience. That alone should be the key for your PCP to get you into to see Dr. Hah. My doctor also mentioned a Dr. Flood that works there in the pain clinic has experience in PN, but not sure if she is as good as Dr. H or if they work together. Will have to ask.

Let's keep each other posted. You can PM me if you would like Michele

[optimus]

Dr. Bautrant discusses this in the article he published in 2003. https://www.ncbi.nlm.nih.gov/pubmed/15067894
The English translation is at the following link: http://www.pudendalhope.info/sites/defa ... utrant.pdf
In the article he refers to patients with a radiculo-medullary etiology who were rejected for his research study.

Following is the definition of radiculo-medullary https://medical-dictionary.thefreedicti ... omedullary

"affecting the nerve roots and spinal cord"

I was told by an orthopedic surgeon that some people can have horrible-looking MRI's who don't exhibit symptoms while other people with very normal MRI's can have severe symptoms, so sometimes it can be difficult to draw any rational conclusions from an MRI. I think you have to go by more than just the MRI. The diagnosis has to take into consideration where all of the areas of pain are as well as history and clinical exam. Here is an interesting article on the topic. https://www.aafp.org/afp/1999/0201/p575.html

Unfortunately this can all be very confusing for the patient as you have experienced, Stephanie. I'm sorry you have been through so much for so long. I wish someone could figure out a solution for you.

Violet

Could you please reupload the pdf as it’s no longer available

[onlysams]

Your PN journey sounds tough. It must have been frustrating to find out about spinal issues like Tarlov Cysts after so long. Getting clear answers and finding treatments that work can be such a struggle.

[Violet M]

Could you please reupload the pdf as it’s no longer available

https://www.pudendalhope.info/wp-conten ... utrant.pdf

I'm not sure if Bautrant still uses the surgical approach described in the article.