Hi all
I have been diagnosed with type 2 and more recently type 1 tn. Mostly on left but I’ve been told, could now be bilateral. I’ve been to facial pain symposiums,yet still feel fairly ignorant sometimes. Since the compression is under the skull, why is it that when I turn my head to the left, I can feel the “buzz” in my left top lip where it is always numb or “wormy” feeling 24/7. Wouldn’t there need to be a pulling on the nerve of some sort. Probably need anatomy 101 again.
Thanks
Camia
Hi Camia,
Sorry for your diagnosis, and indeed the fact you are here asking questions which your medical professional should have provided an answer for.
Ken Casey, prominent neurosurgeon in the area of facial pain, states in a video recorded for the FPA association yearly conference, not the last, the last wasn’t recorded ( personally reckon it was because these recordings could be quoted), that a high percentage of folk, 30%ish (I think it was higher, nearer 40%, can’t quite remember), have symptoms of TN associated with neck rotation.
I think you’re right, “Wouldn’t there need to be a pulling on the nerve of some sort”. The trigeminal nerve complex extends through the face right down to the middle of the neck, so turning your neck could potentially stretch the nerve complex.
The theory put forward by advocates of MVD surgery, is that this stretching puts the nerve in more contact with the vascular compression. Shouldn’t this happen with everyone with vascular compression if this was the case?
The distinction between type one and two, in my opinion serves primarily for the medical profession to filter treatment options and does not indicate a different cause between the two types. It makes little sense statistically that you should have a very rare ‘disease’, now two rare diseases with possibly two causes and different solutions. Type 1 and type 2 classification sells a treatment protocol, all it is a description of symptoms of trigeminal nerve irritation.
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I have exactly the same problem as you! I have TN and the only trigger for my ATN is neck position/movement/pressure/etc. In fact i wondered the same thing, is neck movement tugging on my nerve?! can the human anatomy be THAT clunky??
I really have no answer and the idea that neck movement can “pull” on the TN nerve seems pretty odd to me (but then again, last time i took a biology course was in highschool).
As time has gone on i have come to consider the “neck involvement” theory more and more considering the behaviour of my own TN. Also i noticed that when i drive it usually makes my ATN worse (probably because of all the neck movement involving lane changes, or perhaps neck motion by going over a bump??) so i now drive with a heavy cushion under me and try not to make quick neck motion and it has somewhat relieved my TN pain.
Of course this could be completely coincidental and there is zero science behind it, it is just me observing the behavior of my own TN.
Another reason why i think my ATN is related to my neck pain is that before my ATN started, my biggest medical problem was neck pain! and the same things would aggravate my neck pain (driving, quick jarring neck motion). In fact now I no longer have any neck pain but instead I have ATN (bad trade, i wish i had the neck pain back).
Anyhoo this is not a theory that i can take to any doctors because they will think im crazy. I will just have to experiment on myself to see what will help relieve the TN pain.
H
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Thank you for your responses. I thought I was the only one!! I find that if I turn my neck to the left, not only does the atn activate, but it also triggers a migraine (I have chronic migraine syndrome as well…hmmm…). I’ve only just put 2 + 2 together on this since I sat with friends and had to turn my head to the left to see them when we talked. My lip burned and tingled throughout the evening and then the migraine at 4 am. I had an appointment with Dr. Kasey last year, but cancelled as I went into a remission of sorts where the pain lessened. Dr. Burchiel in Oregon is really good as well. I saw him and he re-confirmed the compression. Since I’m not in the kind of agony that I read about, and the flare ups are not that often right now, I am not planning on any surgical procedures. So, I just wait and when I’m in a flare-up or if I have a weird experience, I write about it and just make sure I’m too crazy.
Camia
Hi Camia, I believe there is a correlation, at least with some of us regard neck position and triggered pain. I notice if I use my cell phone a lot looking down at it, or my lap top that night I have a lot more TN pain. The days I use my devices less it’s not quite as bad. Even reading a book or magazine looking down makes my pain worse at night. Weird, the pain usually starts between 9:30pm and 10:30pm.
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This “looking down” on a book is also a major trigger for me. One of my greatest hobbies has always been going to the library and reading a book or going to a park and laying down and reading. Neither one works now.
I remember last time i was in a park i was resting my head on my backpack (terrible idea for a pillow) and reading. Suddenly i had the worst TN attack i have ever had. I ran to my car and drove home and spent the rest of the day under my blanket. This was early days of my TN so i thought the pain was from a wind hitting my face, now i realize it was my awkward neck position (this experiment is easily reproducible for me).
Also i used to go on the weekends to a library and sit and read a book for the whole day. This entails sitting down and looking down on your book putting your neck in flexion which make my TN much worse. The only way i can read now is if i put a stack of 5 thick books under my book so as to reduce the flexion angle of my neck. Another way is to read on a tablet while im laying down.
@Bosltov Do you have ATN? or classic TN? I feel like there is a subtype of ATN that has all these neck issues.
I wonder if some kind of neck therapy wouldnt provide relief for us, but no idea what that would be like. I have even thought of getting stem cells injected into my neck to see what happens.
H
Neck related TN is not just about stretching the nerve, but irritation/ confusion of nerves at the trigeminal nerve complex which extends into the neck. Nerve irritation at or along the nerve may produce pain in any area that nerve supplies. Most of us have hit our funny bone, ulnar nerve at the elbow and experienced pain in the hand, same thing. Irritate one part of the pathway and the other half says hello. Trigeminal Neuralgia is no different. Take the vascular compression theory, the pain isn’t at the point of compression but in the face, hence why to many is irritation in the trigeminal nerve complex in the neck such a stretch. Turning up at your neurologist/ surgeon/ ortho who has a knife, destructive procedure, a needle or a pill won’t lead to a physical therapist referral. Egos? who knows, but in many cases, after taking a full case history, should be the first port of call. Physical therapy is relatively cheap and non invasive. Combine it with stress relief/ postural advice and nutrition, it would be of great benefit, to many. One hurdle is potentially the patient, for something this painful I obviously need some serious medical intervention.
I remember when you (@anon67464382) brought up the neck issue early on in my TN when i joined the forum i though it was a bit of “broscience”. I had read articles and the vascular compression model seemed to me like a very clear cut explanation, and any deviations from that seemed like quackery to me. But now I realize the picture is a lot more confusing.
For example, how does the vascular compression model explain so many people who end up here after a dental procedure? did the dentist rearrange the arteries in their brainstem?
And the manifestations of TN is a lot more variable than one would expect. Also the success of MVD and various surgeries are so variable, clearly we are missing something here.
I will definitely check a physical therapist, a cervical chiropractor and maybe some stem cell clinic. It may be broscience, but i am not convinced the established model of TN explains all cases equally.
Hi haach
Thank you for your story. Mine is quite different, although the neck thing
could be a correlation of ATN. I’ve had chronic migraines since I was
young, although was not a diagnosis at the time (you know, children don’t
get migraines!).
In my early 20’s I’d wake up in the wee hours of the morning with this
horrific stabbing pain coursing down the right side of my face. This would
a necessitate a trip to the emergency room and a shot of demeral. Later
this was diagnosed as TN1 in the right side of my face, but just via
discussion. No visualization on MRI. The migraines continue and were
almost exclusively on the left side of my face near the inside of my left
eye, kind of near the sinus.
It was noted by my gp after a particularly long bout of migraines with
severity of about 10 or 11, that I had polyps in my sinuses. Off to the
ENT I went. He confirmed via CT. I had 3 sinus surgeries over a 5 year
period in my mid 40’s to remove the polyps. The migraines continued with
the same ferocity. to this day, I don’t know how I raised two kids on my
own and worked full time, not missing a day for the migraine, just
suffered.
After the 3rd sinus surgery, I still had the migraines, and then started
having this burning feeling at the base of my left nostril. this was in
2007. Since then the burning has gotten worse, and now makes my top left
lip numb and tingling all the time, aching and burning across the left side
of my face into my eye, and aching in my top left teeth, numbness in the
top left half of my hard palate, and then this year, tingling in my lower
lip and jaw involvement.
At Cedars, Dr. Wesley King visualized the compression on a MRI. Recommended
MVD, but not great odds of succeses for TN2. Then, at UCLA, not Dr. ONeil,
but his colleague, Dr. Porotian (can’t spell it), even with the MRI from
Dr. King, disagreed, and felt that I have neuropathy from the last sinus
surgery, and recommended spinal stimulator…not for me. Then, I went to
Oregon State University Medical Center, and met with Dr. Burchiel, who has
done research on TN. He took 3-d MRI, and showed me the compression on the
left trigeminal nerve. He is the one who believes that the pain I had on
the right was actually TN1. So, TN2 left, now seeming to have started on
the right with some mild tingling right side of nose and cheek once in
awhile; TN1 added to the left as I do get the shocks in my eye, cheek and
lip, often as a precursor to a flare up. Dr. B recommended MVD, but went
on to tell me how low the odds of success were.
Due to my sensitivity to all medications’ side effects, I take no
medications, except for a bit of Xanax when the pain is severe and
increases my anxiety.
So, that’s the majority of my story. I’m not usually laid up in bed; but,
at it’s worst, causes me to just want to sit and breathe. It has been
quite impacting. My career: Speech and language pathologist. I have to
hold my mouth in a sustained position in order for the child to imitate and
produce the correct sounds. Whenever I have a big smile, smile or kiss
position held for work, the pain increases.
Now, the neck thing has cropped up.
So, there you have it…long story, not over yet. I’m a 63 year old
woman. I don’t know what long periods of no pain or numbness or tingling
feel like, ever.
Thanks for listening!
Camia
You absolutely should explore all options. Chiropractic made mine,
including the migraines worse. so, I’m a big no on that strategy.
Physical therapy was also unsuccessful for me. My migraines can trigger TN
and vice versa. To think that there is no connection there is just plain
silly. Please let me know what you find out, and if anything helps you.
YOu are way too young to suffer like this.
Camia
Haach, I believe I have TN. Mostly right side upper face, every once in a while I get a mild pain in left but hoping it is some other pain. Dental cleaning and xrays today, now I’m paying the price for that, ugh.
Hi H,
Couldn’t quite let you get away with calling neck related TN “broscience”, there are plenty of people in the science community who have contributed to this area. Advocates of Microvascular decompression fall short on answering many shortfalls in this hypothesis and even add weight to the neck argument in their commentary. I’ve personally known folk who have benefited from physical therapy to the point of cure. I know you have read it before, but examine the credentials of the people related to the references in the below link. It is certainly not broscience and answers many questions which vascular compression can’t.
http://api.ning.com/files/kpD37olj0H06zifHBqzI7Ego0ZQ6W06nTWepDVXCIBzMIg3Iba4tmOSjmfL0XYmFEr7WBvL3KiwZqZd0*bT18wgxa3VgsO/TN7.pdf
Wishing you the best, and indeed all.
hey @anon67464382 , sorry for using the phrase “broscience”.
I did mention that “i thought it WAS [past tense] broscience”, so i am not saying it IS. In fact my whole post was about how i have changed my position on the merits of the cervicogenic model.
Also the way i use the term “broscience” is basically a theory that has had sufficient anecdotal evidence to warrant popular adoption and yet it still has not been accepted as scientific fact (for multitude of reasons).
Hi @Camia ,
Sorry for the late reply. I admire you for your determination. I am a single male and I already am having a hard time managing my life.
I guess in a way its nice to have people who depend on you, you cant give in to hopelessness and despair (or you cant afford to) .
It is a shame that you couldn’t try any of the medications. Before I suggest some, i like to ask you if you have ever considered the diagnosis of facial migraines?
I think you also live in California like myself. I saw Dr Raskin in UCSF and he told me that I may have facial migraines because like you, I also have a history of migraines and also my TN is not very typical. He prescribed memantine for me but i think the typical TCA antidepressants like nortriptyline also can be used to prevent migraines.
I hope you can try nortriptyline, even at a subclinical doses it is helpful for many types of TN2 (i am not doctor of course, but from what i have read this is a worthwhile medication to pursue).
Also for myself capsaicin always helps when the pain is on my face. There are ways of applying it inside one’s mouth but I have not gotten that adventurous yet.
Good luck
H
Hi H,
Don’t be apologetic on the term “broscience”, in the right place I might use it myself, next destination Oxford Dictionary 
Hi All.
Thank you for your responses. I know i am very tardy to chat here. I had gamma knife surgery in December 2017. I’d started having severe itching, tearing, redness and dropping of my left eye. I was told by my Neuro surgeon, dr Linskey, UCI, that it was due to overstimulation of the trigeminal nerve. Cool. I decided on gamma knife to start. It’s now June. Unfortunately both the surgeon and i agree the gamma knife was unsuccessful. So, i have another post op appointment on June 27. I suspect I’ll be told mvd is the option. Migraines continue but I’ve been in a good run the last week or so
Unfortunately nortriptylin did not help my migraines but it sure made me sleep through work etc. has anyone with tn2 had a positive result from mvd?
Thank you so much for your time and thoughts. I’m so sorry we all are struggling. Hopefully a well managed pain day awaits tomorrow.
Camia