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Neck-Tongue Syndrome?
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by gnatrea, Feb 07, 2008
From time to time when I turn my head I get a sharp pain in my neck/head.  The pain is usually behind my right ear right where my head meets my neck.  Seconds later my tongue goes numb.  From doing a little research online I discovered this is probably Neck-Tongue Syndrome.  However, no one ever says if this a serious problem that should be looked at or not.  It only happens a handful of times a year and after I stand still with my head down for a minute I am fine.  Could someone please supply me with some more information.

Thanks!
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by morticiandame, Feb 25, 2008
I am a 21 year old Neck-Tongue Syndrome patient. I have had these "type" of episodes for as long as i can remember. I have been to a neurologist every year since i was 13 which is when i finally vocalized what was going on to my family. I always thought that this was normal since i had always experienced it. It took me a while to be examined by a doctor who knew what could be the reason for this to happen. I too find that dropping my head for a short while relaxes my neck enought to stop the throbbing pain.

I have found by going to the doctor that there are things which may trigger it including for me stress and not excersising. I have tried Physical theropy, accupuncture, massages, pills, daily range of motian techniques. I find that the use of a body ball which i lay prone on and roll as far as i can till my head touches the ground to help in case i can feel it comming on as well as an evening routine which i do as well as rolling my neck in circles and working my upper body.

I also found that as i got older my episodes became less violent(only the pain in face/neck are present with numbness of face, tongue and sometimes arms.) I find looking over my shoulder for an extended period of time to be my trigger mostly. When i was younger it would effect my whole side of body causing me to fall, or loose balance as well as become ill or faint because the pain was so great. I have stuggled more with it growing up.

I would tell you to go to your doctor get it checked out and find out  what you should look for. It helps to journal as well as to make note of what you were doing and what it felt like. It always felt like i jerked my head real fast. also something to look for is how you hold your head. Many times i put my chin up to relieve stress on my neck(or so it feels) but i was told to not do this.

Go in and become educated. E mail me-im interested to talk to someone with the same syndrome....ive never met anyone else.

***@****
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by manpt, Mar 23, 2008
Hello both of you. Take my comments for what they're worth, but it sounds like gnatrea is talking about neck-tongue syndrome, which is ACUTE, brought about by rapid neck movements, and involves a distribution of symptoms only within the face/head, most often reported as numbness in the tongue. This is usually caused by an acute subluxation (partial dislocation) of the top two vertebrae of the neck, which causes abnormal input to cranial nerves and can cause symptoms in the cranium (head).
HOWEVER, morticiandame is describing (at least in the reports of her earlier symptoms) signs and symptoms of vertebral artery insufficiency, particularly if it is causing dizziness, loss of balance, or drop attacks (fainting). This is an important difference! SUSTAINED full rotation of the head can kink/obstruct the artery that goes to your brainstem, as can extending your head backward, and both should never be performed together. Rapid, full range rotation can also cause these. They likely were more severe as a child, because several key stabilizing components of your cervical spine were not yet developed (until about 18 years old).
It is important that both of you see a neurologist to rule out upper cervical spine instability that could threaten the arteries in your neck that feed your brain. Be sure to mention the full complex of your symptoms, especially what causes them (head movement)! A few key words to also throw in: vertebral artery, drop attacks, Neck Tongue syndrome. Beware, Neck tongue syndrome is not a well-known entity for most physicians, but if you use the term, they will probably look it up. The pertinent author is a neurologist from Australia, Nicolai Bogduk. Good luck.
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by sooners85, Apr 01, 2008
I as well have been experiencing these "attacks" since I was 10, I can still remember the first episode.  I always have been intrigued by the ipsilateral neck/tongue pain.  I have seen a neurologist and had a MRI performed and nothing was discovered.  I had already research neck-tongue syndrome and mentioned to the neurologist and she was worthless. She never even called me after my MRI came out normal.  My attacks are not as frequent anymore and I feel helpless because this is so unknown.  Does anyone have a physician in the US that is well informed on this syndrome? I have read that it could be caused by delivery and how the OB doctor pulled the baby out of the canal could have caused this cerivcal complication?  Does anyone know any long term effects?
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by Weesy68, May 06, 2008
This can also be related, while uncommon, to a connective-tissue disorder.  If you also have what is called hypermobility which basically means you have the ability to do odd things with your fingers, joints, etc., this can be a form of that hypermobility due to the subluxation of the atlantoaxial joint in your cervical spine.  My son suffered from this for years and they could not find out what it was. I just recently found out that it was neck-tongue syndrome while I was searching for a cause for his "double-jointedness" which is actually called hypermobility.  I would suggest you look into other causes as well if you have some of the hypermobility issues related to connective-tissue disorders.
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by mindalinda, Sep 17, 2008
I too have suffered from these strange sudden head pains for as long as I can remember. It's an intense blinding pain at the base of my head and my tongue always goes numb and feels like it swells up and occasionally my vision blacks out for a few seconds, and then it all fades away. I decided to look this up after having one yesterday and my search led me to neck-tongue syndrome, which led me here. After reading the first couple posts I started to wonder if this could be related to my joint problems, since it's supposedly the joints in the neck that cause it. After reading Weesy68's post I'm most sure of it. Many of my joints are "double-jointed" (hips, wrists, elbows, shoulders, and fingers). My arms bend 30 degrees backwards and 15 degrees sideways at the elbows, one of the more extreme cases my orthopedists have seen. (they're always amused when I go to a new one for the first time). My big question now is, can anything be done about it? Even if you know you have something like this, is there actually a treatment? or is it even worth treating? Meaning is it going to cause any damage in the long term?
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by se77, Sep 17, 2008
I too have suffered from the same thing since I was 11. I feel electric shocks on the base of my neck (on the rigth side) strong, sharp pain followed by numbness and tingling on my face and tonge, after this episodes, I can spend a whole week suffering from all kinds of symptoms on my neck, limbs and back.
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by Weesy68, Nov 13, 2008
Yes, something can be done.  My son was sent to a neurologist for flexion and extension studies and is from there seeing a geneticist.  Some connective tissue disorders can only be diagnosed through genetics others can be diagnosed through blood/skin tests, etc.  The biggest reason to verify that you may have a connective tissue disorder is that you can begin taking medication that will currently help you or which will may prevent serious complications in the future.  Also, if you are subluxating near that join in your neck you can actually dissect an artery, which can kill you fairly quickly.  In Marfan's syndrome you can have heart problems which can kill you if they go undiagnosed.   There are a lot of connective tissue disorders so it's important to get a diagnosis because some may be mild with painful arthritis in the future and others can kill you due to the affects on your heart and your arteries.  Some you may want to look at are Ehlers-Danlos, Marfan's, Behcet's, etc.  Neck-tongue syndrome can also run in families.  My son's does.  His father and grandmother both have it.  Many of the connective tissue disorders are autosomal dominant meaning they are passed down from parent to child while others are recessive so for your children and grandchildren's sake I wouldn't ignore it.  You can help them out early in life instead of them having to wonder why they have these odd things going on.  =)  Good Luck!  Our genetic appointment is upcoming in March so we will see.
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by weemegy, Mar 03, 2009
Hello.

Im pretty sure I have neck-tongue syndrome. Ive been experiencing this since I can remember. I only have these a few times a year but when it happens my neck feels like somethings "popping" and then my face and tongue go numb for a short time.

In response to Weesy68 I have been diagnosed before with hypermobilty in my joints in my fingers, elbows and shoulders. Do you think this relates?

Does anybody think its worth asking my doctor about neck-tongue syndrome? Can it cause long term damage?



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by Weesy68, Mar 03, 2009
Well, we saw the geneticist, and he stated that he feels my son has benign hypermobility, but that his neck  appears to be stable.  He confirmed the diagnosis of neck-tongue syndrome.  I also found out today that my son has scoliosis, so that was new to me.  I don't know if it will need treatment or not as the x-rays need to be done first, but I could see it right away when the doctor pointed it out.  Neck-tongue syndrome is rare, and I suggest you take information from articles on the internet, otherwise you risk getting that deer in the headlights look.  The concerns can be real if your particular case is because you have a serious connective tissue disorder such as Marfan's or Ehler's Danlos.  As far as my son goes, the doctor feels he is stable and that there is no reason to worry.  I did read tonight that scoliosis can cause some issues such as this, so perhaps if the scoliosis improves through physical therapy or surgery, if it's necessary, the neck-tongue syndrome may too.  Either way, I would see an orthopedic surgeon as I think they know more about the musculoskeletal system.  Take in the article.  That is what I did, and I've had a neurologist and geneticist confirm the diagnosis.  At least now I have the peace of mind knowing he won't dissect an artery in the process and that I was able to find out about the scoliosis.  I have no idea how that wasn't caught earlier.