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]

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.

[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]

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?

[se77]

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.

[mindalinda]

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?

[ljudmilla]

When is black vision, vitamin Chromium can help.

[Weesy68]

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.