Look at the TLJ

[Pilot]

Good news! Maybe even great news for some! I'll get to that in a bit but let me start off with a disclaimer: I'm not a doctor, I'm a pilot and a PNE victim like most of you. However, I think I'm a good ways down the road to recovery! I'm going to share that story with you and I strongly encourage you to read on but first I have to vent! I'm 52 years old and apparently I've been disillusioned most of those years because I thought I was living in the age of "modern" medicine. I was walloped by a dose of reality a couple of years ago when I was suddenly afflicted with PNE. My trials and tribulations are much like everyone else's, pretty much meeting one dead end after another. Over the course of 2 1/2 years I saw 3 Neurosurgeons, 1 General Surgeon, 3 Urologists, 3 Physical Therapists, 2 GP's, and a whole plethora of friends and acquaintances from the medical field. Only 1 person in that group had a working knowledge of the pudendal nerve and he was one of very few in the country who specialize and that was Dr. Antolak in Minnesota who, by the way, is now retired but I want to take this opportunity greatly applaud his efforts in the field. I don't know the story but I sense it took great courage on his part pursuing a practice in this area. Of the neurosurgery group, 1 had never heard of it (OU), 1 had heard of it (OU) and 1 pretended to have heard of it (UCLA). Had to shame some schools of neuroscience!The urologist group was a bit more in tune but the PT and GP groups were clueless. It's astonishing to me that the study of neuroscience stops at the sacrum! This "nerve" disorder isn't new, it has afflicted thousands, it's life ruining, and it is beyond appalling that the medical community has disregarded it!! Ok thats my vent, now on to my story.
As I said, I'm an airline pilot, previous military, and have been a pilot for 30 years. 2 1/2 years ago I was making just a normal landing, and no it wasn't a bad landing, when I went to apply the brakes I had sudden, extremely sharp pains in my groin. When we got parked at the gate I tried to get out, I found I could barely move; the pain was excruciating. I could barely walk and would have gotten a wheel chair but the thought of that sight in a major airport terminal overcame my pain. Over the next couple of days my pain subsided somewhat but the remembrance of that trauma remained kind of like PTSD. Specifically; my pain was unilateral on the right side and went from just below the top of my butt crack (gluteal cleft) down to my rectum, perineum, scrotum and penis. BTW, I've really enhanced my medical vocabulary during this journey but I'll still probably use butt crack so as not to get confused with a medical type. So I go to my GP who refers me back to a neurosurgeon who had previously given me a "mostly" successful laminectomy (CSF leak complication). I had no clue at that point what had hit me and I accepted his diagnosis of lower back strain. "Take some time off of work and it will heal in time". It actually did subside with occasional flare ups but i was able to return to work. A little less than a year later it returned with a vengeance. It was at this point that I started seeking other sources of help but more importantly I started educating myself on the probable source of my problem. Given my symptoms it seemed very clear to me that I had pudendal neuralgia. I returned to my neurosurgeon with my new education and self diagnosis and somehow he agreed with me but said he had never heard of the pudendal nerve! I asked him to refer me to a urologist which he did. The urologist was vaguely familiar with the pudendal nerve but had never treated it so he referred me to another urologist with experience in it. This urologist presented an option of a neurostimulator implant that costs $80k a pop and lasts 3 years at most. I was simultaneously working through my interventional pain management doctor (interventionist for brevity) who was onboard with my PN diagnosis and referred me to Dr. Antolak in Minnesota. For those of you that think there's a Dr. House out there thats going to get his whole staff working on your problem then you should probably think again. Dr. Antolak was as close as I had come. We spoke at length on the phone prior to my appointment. We did the 3 pudendal block thing in Oklahoma (huge waste of time and money in my opinion and can expound if anyone is interested) so that I wouldn't have to make repeated trips to Mn to do them. So I go to my appointment with Dr. Antolak, again quite lengthy and detailed. After a series of sensitivity and conductivity and other "thorough" tests he concluded conclusively I had PNE and we would go straight to surgery once insurance and logistics were worked out. I was ecstatic to have a possible resolution to my problem, although the recovery period sounded like a nightmare in and of itself. After about a week, surgery was scheduled for about 4 weeks away. And then something miraculous started to happen: my pudendal symptoms gradually went away! I called Dr. Antolak to cancel the surgery and he concurred. I can't explain it although I have some theories it might be associated with Dr. Antolak's examination or it might have been the result of some "homegrown" PT I was trying, or something else altogether. When I say it went away that's not entirely true. As slowly as the pudendal symptoms dissipated, cluneal symptoms appeared! Again self diagnosed. Sorry for the long story to this point but this is where it starts to get interesting. If you were to have a choice between the 2, you would definitely not want to choose pudendal, it's effects are much worse. So I go off down the cluneal road and once again very limited knowledge in the medical community. I read everything I could find on pelvic pain, most notably a publication by Dr. Dellon. I'll skip how I arrived at them but my deductions at this point are that the source of my cluneal pain arises from my thoroculumbar junction (TLJ) and that that same source was also responsible for my pudendal issue. Armed with a higher level of education and a theory, I go to my pain interventionist, explain myself and convince him to give me a nerve block at the TLJ and holy cow! For the first time in 2 years I'm pain free! Now that lasted around 2 weeks till the block and steroids wore off but now at least I've narrowed down the problem. I go back to my GP to get an thoracic spine MRI to take to another neurosurgeon who I had previously seen for the pudendal problem and he was no help then but my GP says he's a "really good" neurosurgeon! Let's just call this guy Dr. Jackass. Well Dr. Jackass, with a few bad mannerisms I'll skip, proceeds to tell me that my thoracic spine is a picture of health and the problem couldn't possibly coming from there. I get the feeling he wants to steer me down the psych road. I had to see him to look at the T spine to rule out any obvious problems there and my interventionist wanted that as well. And to his credit he did recommend a nerve ablation (rhizotomy) which I scheduled with my interventionist. I go in for my rhizotomy and am discussing with the interventionist my theory that the PN came from the TLJ and here is where the story climaxes! He tells me that since our last discussion that he has done TLJ blocks on 4 of his pudendal patients, now hold on to your hats! IT WORKED!! This was over a month ago and the rhizotomy is holding about 95%. I know its only going to last from 3 to 18 months before the nerve regenerates so I'm working feverishly to identify a more permanent solution. Now that I know where the problem lies and can actually do it, I'm hoping PT, the right PT, goes a long way toward that end. I got a couple other ideas and I'll keep you posted. I don't think that the technology exists today that can specifically pinpoint the problem. MR Neurography is probably the closest thing but from what I know about it, which is not much, its not there yet. The TLJ is not without some research however. In the 1980's a French Dr. named Maigne researched it and coined the term Maignes Syndrome otherwise known as Thorocolumbar Junction Syndrome. He defined it in very broad terms as a malfunction of the TLJ and not stipulating a specific cause. He assesses that up to 40% of low back and groin is attributed to this syndrome. This is what I would diagnose myself with. I have not found where Maigne or anyone else has proposed a correlation between pudendal and cluneal nerves short-circuiting or somehow otherwise referring pain but that's exactly what I'm professing here!
Why this disorder hasn't been more researched and dealt with in the past is beyond comprehension. You can count the number of doctors considered experts in the US I think on one hand. I tried to talk my interventionist in to kind of filling Dr. Antolak's shoes but it's not feasible for him to do so. I was glad to see the PN conference a few months ago and I guess a convention is scheduled for next year so maybe its starting to get the attention it needs and deserves. I've come to know several sufferers so I know there has got to be thousands out there.
Now having said all of this, remember that I'm a pilot not a doctor! I certainly don't think this is a panacea for all PN but what I would say is that if you've tried everything else and are at the end of your rope, then go get a TLJ block. And considering the success rate of PNE surgery, I think I'd probably give it a go before that. For Cluneal sufferers, you need to start there. It innervates there and is the most likely source, and I'd have to caveat that, with: "in my opinion". And I can't say this enough: I'm not a doctor, although I think I'm smarter on these nerves than any Oklahoma doctor! I know the pain is great and the resources are limited and I think sharing experiences are a great source of help and hopefully a few folks can get some benefit from mine. I searched the site for TLJ and found no results!!! Surely someone has looked in to it! I know with 100% certainty that that is where my problem lies.

[janetm2]

Welcome Pilot,
so glad to hear you finding some relief and passing along the info to others here. We are always glad to hear new ideas. I have see maigne listed but not sure I saw the TLJ block but I may have missed it. I hope you can get rid of all your pain as you continue with treatments.
Janet

[Bertie]

Hi Pilot....very interesting I have also become my own researcher in this, no one wants to have anything to do with the pelvic nerves it seems. I am from the UK and an on line newspaper the Daily Mail had a report on a lady with the condition you are taking about and she paid to have surgery in Europe by the guy you are talking about I belive, look it up she was cured.

[Violet M]

Hi Pilot,

It's too bad you had to figure all of this out on your own but good for you for researching so much. Dr. Antolak was well aware of Maigne syndrome and I think steered some of his patients in that direction. Like Janet said, it has been discussed on this forum as Maigne syndrome, not TLJ, although I think I prefer TLJ because it's more descriptive of the location of the problem. Definitely something pelvic pain patients should consider in the differential diagnosis.

Thanks for posting your experience. I will be interested to hear your progress and I hope the treatments keep working for you.

Violet

[desperate]

Very interesting stuff pilot.

I remember a few months back my chiro actually suggested that I take a look at the superior cluneal nerve Bc it inervates the pudendal. Another chiro also said I have some fascia restrictions by this exact area by the QL muscle and the TLJ area. So who knows. I am assuming a lot of people that fascia restrictions in many areas of their bodies which is causing the it pne pain.

[desperate]

Sorry I'm ttyping on my phone. I really need to proof read before I post lol

[bikelover]

Very interesting thread, and I'm glad you found relief! Could you describe more accurately your symptoms? Was there rectal pain? In the butt\butcheeks? Must have felt so good to finally nail it!

[FFSeth]

Pilot reached out to me a couple weeks ago. He felt my problem was likely related to my back. I contacted his doctor in Oklahoma and his doc said that he has used medial branch blocks from t10 to L2 to successfully treat 15 pudendal patients. My understanding is that this has been over the course of a couple months. When I asked him the theory he responded (it is a poorly understood referred pain from the TLJ). I have a theory but I'm just a fireman with a high school diploma so I need to run it by someone much smarter than me. I do know that some of the nerves that affect urination and bladder control originate from t10 to L2.

I have bilateral pain. Rectal perineum and penile. Just prior to the insidious onset of my symptoms I had a back injury around the tlj. Most likely t11 or t12. I never linked the two. Why would I? Anyway I have been doing nothing as far as treatment goes. I knew my healing could only come from God. After 2 months of prayer pilot contacted me out of no where. Since then I have found that my back muscles near my original injury are riddled with trigger points from compensating for some structural issue in the tlj I assume. Don't ask me how I missed this for 8 months. Forest through the trees I guess. These trigger points reproduce ALL of my pain. Also, palpating the facet joints of the tlj reproduces my symptoms. The medial branch blocks block pain that is originating in the facet joints. I haven't gotten the block yet. I want to deal with my trigger points first to ensure I don't get a false negative. I'm definately not better yet but I am very confident mine is a back problem in the TLJ. I will update as I continue down this road. Thank God pilot figured this out. I truly believe this will help a lot of us. I am sure there will be some "official" research done but people tend to move as though we aren't in crippling pain. Until then if you can link the onset of your symptoms with a back injury it may be worth checking it out.

[bikelover]

This is why im so curious as well. Coincidentally Ive had a tight spot in the thoracic area for years. It comes and goes, but in the past months its been continuos and worse. I've also had negative pudendal block and negative botox at pirifomis. My new pain doc wants to try a diagnostic block at the SIJ and at sacro coccygeus joint because I have tender spots in those areas, but all the mri studies I've had show them as normal. I start to wonder if I 'm in the same situation, but my symptoms are mostly pain in the butt and rectal tightness. I already sent the info to my doc for discussion.

[FFSeth]

The cluneal nerves innervate the butt and come from the tlj. It's been my experience that tight rectal muscles are just as much a response to pain as they are a cause. I hope your doc is responsive to the idea. Mine wasn't. Maybe try a massage to loosen up the muscles and fascia around the area? See how you feel afterwards? Maybe you will get some teproduction of symptoms or just feel better afterwards. My symptoms have improved with working that area. Good luck.