Bilateral ATN and symmetry?

Symptoms & Treatments Idiopathic Facial Pain
1

Hello Everyone,
I’ve had bilateral ATN for 18 years now (since sept. 5, 1998). It was misdiagnosed for 12 years in Madison, WI, then diagnosed by my PT and my Craniosachral massage therapist after quitting my teaching job and moving to Homer, AK at the 12 year mark. Finally I had an official diagnosis by a neurologist in Anchorage at the 16 year mark, and got a mostly successful MVD done last year (after 17 years) on my right side only.

Recently, I’ve been thinking about why I was misdiagnosed for so long and I’ve come up with two probabilities.

One is that it started far before it became a known disorder and I was simply unlucky.

The second is that, although the nerves are supposed to be completely unrelated to each other, my pain has always been relatively symmetrical, but always worse on the right. For example, during the first 12 years, the pain was mostly in the first branch behind my eyes, though when it got really intense it would go into my upper teeth and lower jaw as well. I referred to the pain as “weird headaches,” because of which branch it started in and the fact that they didn’t seem to fit in any category.

During that time, I remember thinking that the pain was like a burning arrow going through my head, from one side to another. Interestingly, I’d always start on my right side and point or draw a line to my left when describing the pain. Eventually i described it like a metal frame behind my eyes, but sitting on my nose, with a certain number of concrete bricks being put on top, depending on the pressure I felt at that moment. Luckily, I worked with an amazing PT up here who helped me get the pain in control. I even had a social life again on top of working!

Then the pain moved into my teeth in a big way- I think as a result of a teeth cleaning- though I’m not sure, but again it was on both sides, with the right being worse.

strong textSo, my question is: Does anyone else have Bilateral ATN, with pain in the same branches regularly?

I started thinking, “I should be having pain in different places- like behind my eye on one side and in my teeth in the other” if they are truly unrelated. Then it occurred to me that that’s why doctors might be less willing to believe me, which made me curious about others with Bilateral ATN.

Quite frankly, if my veins and arteries can be _growing_emphasized text__into my nerve strangely on both sides, I don’t think it’s out of the question that they could also be touching in the mid-range area (my nose used to often be in pain- now just more occasionally since the MVD and work from my PT), but who knows? Mostly I’m just curious about how many of you who experience bilateral pain, experience it in the same branch at the same time.

Thanks!
Christy

2

I hear you! Suffered for years & tried all the meds but only made me a zombie! Finally had cyber knife procedure & pain was gone almost instantly! No more meds and it’s been 6 years since procedure. Only drawback is numbness on right side of face & jaw but much better than pain.

3

Have you been tested for viruses? My wife suffers from ATN. Though not bilaterial, it does go in and out of remission. When it comes out of remission, it starts in one branch, then tends to spread to other branches. She did have the MVD. We begin to wonder if there was something other than compression causing the issue. Very tough to diagnose, but we have a growing data set that shows this could very well be correlated to the Herpes virus ‘settling’ in the nerve. The herpes virus is known to reside in nerves. We are by no means certain this is the root cause, but is something we are looking at more closely.

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Hi Sean,
I think so. I get tested for all STDs every year or so, even when I’m with a monogamous partner, since it’s offered at my clinic with no cost to me and I go for my female check-up stuff then. I figure I can’t be too careful. I’m not married, people are human, it’s easy and free, so I just get it done. So I’m pretty sure I would know if I had herpes. I’ve also never had a cold sore or any other type of outbreak. However, if you find out someone could be a carrier without testing positive for it, let me know.

I feel like I’ve been tested for everything over the years, except MS of course, which interestingly, is actually associated with ATN more often than with TN type 1. Although, I’m open to being re-tested for many things or for new things because 18 years is a long time for science and tests could be more sensitive now.

Recently I’ve been noticing that my pain isn’t exactly symmetrical or just in one branch; I can have pain in my teeth intensely on one side, some moderate pain and/or usually much milder pain near or behind my eyes, or just on one side of my forehead or nose too. It’s just so much less intense that I hardly noticed it, until recently when I started to pay closer attention. The lesser pain can be on the left, or even still on the right (had MVD on rt 1 year ago) sometimes as well.

I’m still curious though if there’s anyone out there with bilateral pain in just one branch and/or that traveled to another branch at the same time on both sides? Anyone? Anyone? Bueller? :wink:

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Hello Christy,Yes I have bilateral pain,in fact your pain sounds a lot like mine especially the nose bit.Im really interested that you had an MVD and glad it was successful-did you have the electric shock like pains of TN on your right side?I don’t get these jolts and I thought an MVD was only for this type of TN.Like you I have had this condition for a long time,16 years.I was on 500 mg of pregabalin for about three years and it kept the pain away but I was as high as a kite and eventually weaned way down.Im on very little medication now and have a clear head as a result.Im due to see a specialist in December in London. and have several options to discuss with him,cyber knife and now MVD etc.I deal with the pain as it comes and it is better than it was as I have more good days in a week than bad but I want all good days of course ! I look forward to your reply.Best Wishes!

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Hi Eileen,
Until recently, and for as long as I can remember, I’ve only had occasional TN1 pain with shocks that last for just seconds (thank goodness). They were mild enough that I thought everyone got them and that they fell into the category of “growing pains,” but it was in Sept of 1998, when the constant TN2 pain showed up in the branch behind my eyes that I started my long, chronic pain journey and found out relatively recently that the other pain was related. It took 16 years for me to be officially diagnosed with TN (I think we both got this condition several years before most doctors started being educated about it). I’m still finding that most neurologists only really know about TN1.
Then, I had an MRA done (which is an MRI with contrast dye that allows them to see the veins and arteries, not just the inter cranial space) in April of 2014, which showed a clear compression on the right side. This made sense, as though my pain was bilateral, it was always much worse on the right. In fact, it still didn’t show how truly compressed the nerve was (several veins were growing into it and an artery was spiraling around and compressing the nerve!) and two Neurosurgeons would not perform the MVD. I had to really advocate for myself at the Mayo Clinic and agree that, although the Neurosurgeon was not 80-100% sure that it would help me, I still wanted it done. I don’t think they understood that after 17 years (at that time) of constant, daily pain, I would’ve been happy with a 2-3% chance that it might help! Well, it definitely helped. The pain on my right is MUCH better than it used to be. I still have pain on my left- mostly in my teeth- and at first it was, or seemed, worse than it was before the MVD on my right. However, I’m about a year out now from the procedure and everything is finally settling down. Finding baclofen very recently has helped enormously with the daily pain in the teeth on my left side. Between that and the MVD helping the right side, I can finally say the pain is in MUCH better control again. What a relief!
So long story longer, make sure your MRIs are done with contrast dye, so they can see your veins and arteries- not just possible tumors -and if ANY compression shows up, be sure to ask about what they might NOT be able to see. Also, this is a very intrusive procedure, with a lot of possible side effects, for a condition that is not well known. I found most Neurosurgeons did not want to do the procedure for TN2, especially because I was on opioids as well as other TN meds. They were all very condescending and I cried after every appointment and almost gave up, but with reminders (from those that watched me live through this daily) about how bad it was, that I was NOT a wimp, nor a drug-seeker, nor imagining the pain, I managed to stay strong and convince one of the best Neurosurgeons in the US to take a chance on me. I will say that my memory is a little worse now but, especially since the left side is under better control again too, I’d trade it anytime to get rid of the agonizing pain I was in daily, just 15 months ago. I have to write more things down and put more reminders in my phone, but who doesn’t as they age anyway? For me, it was worth it for sure. Clearly, every person has to decide for themselves if they think it will help, and if they think the possible side effects are worth taking the chance to relieve them of their pain.

Good luck! I’d be interested to know what happens and what you decide. If you do have the MVD, please feel free to ask any questions!

In solidarity,
Christy

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Your story is very interesting to me, did doctors ever throw out the term trigeminal neuropathic pain as opposed to trigeminal neuralgia? Mine is bilateral and that’s what they tell me and why im supposedly not a candidate for surgery.

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Hi Coreysarah,
Sorry for the long delay in responding.

I’ve read about atypical neuropathy but it doesn’t quite fit my symptoms as well as TN2. What are your symptoms? Have you had an MRA?

I heard “atypical face pain,”(which now falls under a psychiatric diagnosis) at the Mayo from the first neurologist I saw there. I think it was mainly because an intern, who knew almost nothing about TN, much less TN2, took my history then relayed it to this neurologist. He got much of it wrong and the doctor was arrogant enough to think he’d heard the whole 17 year story, as well as my condition at the time. He declared that he didn’t think the Neurosurgeon would do the MVD, nor that I even had TN. Reduced to tears of frustration, I asked him what he thought I had then, that followed the trigeminal branches so closely. He shrugged! They were actually quite uneducated about TN2. They kept saying it couldn’t be TN if it was bilateral. They acted as if they had never even heard about TN2 or that it was not a valid diagnosis. It was very frustrating. I was extremely angry (and embarrassed) to be put back in the “it’s all in your head,” category, even with a clear compression, I didn’t want to even go to my appointment with the surgeon, but luckily, I was there with someone who could see this all more rationally and from a male perspective. He told me I was strong. He told me I wasn’t creating the pain in my head. He told me to write down the reasons my neurologist (from home) and I thought I was a good candidate for MVD, to write down my main symptoms, and my questions. I was lucky to have him for the exact time that I did. I had been on this “journey,” alone until then and am again now. Eventually, ironically, he couldn’t cope with seeing me in pain and didn’t think he could create a life with someone in chronic pain (he had thought the MVD would fix me- voila!). But, I digress…

Luckily when I saw the surgeon and gently, but strongly, kept pushing, continuously referring back to the compression he finally sighed and decided to “show me” my scans. That’s when he changed his tune, very quickly. Had he even looked at them previously? I don’t know. He used the word sandwiched, referring to the nerve and some arteries. I quietly repeated, “sandwiched?” He looked at me, startled. “Hmm. Yeah, and there are some veins we really could get out of there too…and we could do it tomorrow.”

My opinion on MVD is that if you, or anyone with bilateral TN2, get scans that show a clear compression and your pain is significantly worse on that side, you might get relief from this procedure. I obviously can’t make that call. However, in order to do so, you might have to fight for it. Be strong. Expect Neurosurgeons to be condescending and possibly even ignorant about TN2. Educate yourself on the procedure. Be sure it’s what you want. Be sure you get someone who does this regularly. The best you can get. This is your BRAIN they will be going into. Don’t take it lightly, but don’t give up if you have some evidence and intuition that this could help you.

I also want people to know that I still get some pain on the right, mostly very mild and intermittently, but it also can get a little stronger if I’ve pushed my body too far. However, it’s SO much better than it was, and it never even gets as bad as the left, that I don’t regret it for a minute. I’ll take the relief for as long as it lasts.

I’m sorry for the long response. I just think it’s important for all of us to share our stories, because I know others are being treated the same way in doctors’ offices all over the world. I want people to know that it wasn’t easy to get this done. It’s important to trust yourself, educate yourself, and advocate for yourself, even in the face of ignorance and condescension.

Good luck to you Coreysarah, and everyone coping with this awful condition that seems to affect everyone differently (which makes doctors want to simply ignore that it exists)! I wish all of you pain-controlled days, and pain-free moments! I promise I will make my future responses more succinct. :slight_smile:

Christy