Neck-Tongue Syndrome?

[gnatrea]

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!

[Weesy68]

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.

[Habeaslo]

The vertebral artery dissection can happen if you have a connective tissue disorder or you atlantoaxial joibt subluxe?

[weemegy]

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?

[Weesy68]

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.

[rivens]

I've also suffered from neck-tongue syndrome since i was a child and thought it was normal - i assumed it was what people called "a crick in the neck". It was only as i got older that i realised - due to the alarmed reaction of a friend who witnesses one of these episodes - that this acute pain (it feels like an axe striking my head, followed by a fizzing sensation) and the numbness in my tongue was something different. Soon after i got referred to my local hospital and was lucky enough to see a doctor who'd just read one of the few medical papers on this syndrome. I had an MRI scan like sooners85 and there was no apparent abnormality. I dread it happening when I'm driving as my head always falls forward (or that's what i do to relieve the pain) but so far so good. Otherwise i'm in perfect health in my early 40s (i've run marathons) and think it's just one of those things.

[bri89]

Hi, I'm 20, and I have also suffered from this since I was about 7 or 8, where i'd turn my head, and get the sharp blinding throbbing pain up the right side of the back of my head & neck, and the left side of my tongue goes numb, and feels swollen. It probably doesn't swell it just feels like it does because it's numb i guess. Anyway, I found the neck-tongue syndrome articles online, took them to my osteopath, and he found them interesting, but knew nothing about it. I mentioned it to my GP, and he basically laughed it off, like, don't believe everything you read, even though it explains my symptoms EXACTLY, and said it's probably a pinched nerve or something, and never got further into it. After reading a few of these posts, I'm a lil worried that it could cause serious problems later on! Do any of you also suffer from frequent headaches, including migraines? Because I do, and they also seem to be unexplainable, so frustrating!!

[pembygirl]

I have also had these attacks.Turning my head too quickly.  Burst of pain at the base of my head and a paralyzed tongue. I really feel paralyzed for the 10-20 seconds of pain. I cannot move my head at all . My tongue feels inflated but STIFF and hard unable to move. It is a very scary situation that previously seemed to happen with sports. Yesterday it happened while gardening. I believe my first attack was 9ish. Now 36, I have probably had 20 episodes in my life.  Not quite once a year. But when it does happen it is a scary feeling. What if I was driving etc.
Am I  actually paralyzed?  Dr's don't seem to help. I have found Acupuncture helpful. But with episodes not even once a year, it is hard to tell.
Thank goodness I have found others with the same symptoms and I am not crazy. Thanks for this forum