Look at the TLJ
Posted: Sat Jan 10, 2015 6:08 am
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.
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.
