neck muscle tension

[Milauran]

We're still trying to establish whether my son has CM. For the past 3 years he's been treated for muscle tension in the neck causing tension headaches. His neck muscles are tense and he actually has two bumps at the base of his skull where the muscles attach because they are so knotted. If you asked him to describe where his headaches originate though, he says it's at the bottom of his skull, not his neck.

So my question is, those of you with CM, do you have tense muscles in the neck? The reason why I ask is, I don't want to give him  false hope that we may have found an answer (CM) to his years of pain when it really might be just muscle tension. (That no health practitioner has ever been able to successfully treat) I'd be thrilled if we had an answer that might get him treatment that could change his life but...

The MRI report was so vague, low lying cerebellar tonsils, slight crowding of the foramen magnum. Nothing about herniation or protrusion although I think if there is crowding it's got to be because something is putting pressure on something

He doesn't seem to have as many symptoms as others though, headaches brought on by any position that has his head bent forward, neck, shoulder pain and some dizziness.

I thought I read somewhere that for most people, symptoms occur when they tilt their head back rather than forward. Is that the case for most of you?

Thanks

[selmaS]

  Wondering how ur DS is doing...have u heard nething from ur drs?

[linnielou232]

As every one say's every one is different, but I also had the same symptom's as your son.  The base of my neck felt like it was in a vise.  It is due to the spinal fluid flow.  I had surgery and it did help with the pressure.  I also suggest you seek a true chiari specialist and  they will be able to answer most of your question's.  My mm was only at 6.5 mm but as the dr stated for me my tonsil was wide at the base and came down to a point so I wasn't getting the right flow.  It is really painful.  I also right before surgery counldn't bend forward and I still can't after surgery.  Having CM is a life altering issue.  I hope you get the right dx.  This is the worst and flustrating time for you right now.  Not having the answer's.  You and your DS is not alone.  Best of luck.

[tracip14]

Ditto for me - severe neck and shoulder pain. My headaches (that have been getting progressively worse) are dual in nature - very "pressure oriented" and pain at the back base of my skull.   I had to chuckle when you said you couldn't lay on your stomach - I have NEVER been able to do that - and I always thought it was odd that other people could do it!  I am having decompression surgery Jan 5th - was nervous for a long time...now, I am actually looking forward to it.  I am so sick and tired of being it pain....I am hopeful I will be one of the lucky ones!

[selmaS]

  Many of us were mis-dx'd for yrs with the same thing, it is either stressed muscles, or anxiety...

And yes yrs of a stiff neck not knowing y....not being able to do many things, like Rylanesmom said , no lying on ur stomach and looking up, or laying on ur side and propping ur head up on ur hand....

As a child swings made me sick, merry go rounds did too just to watch them....I never understood how others didn't seem to mind....I thought I was too sensitive and would force myself to deal with it.

Even sitting on the floor with ur legs straight out in front made my back hurt and I had to bend my knees as my torso would slowly fold....

  And getting a CM dx is not necessarily a return to normal....be careful not to give false hope there either....until u find out if he is a surgical candidate and then if he is how he handles it....we are all different and respond differently...

Same goes with the symptoms....not everyone of us will have all of them...the most important things are do u have a obstruction of CSF, and how is it affecting ur everyday life and ur overall health.

    "selma"

  "selma"

[Rylanesmom]

That wa supposed to be into not not

[drewlevas]

My neck is extremly painfull tonight and my shoulders are tense. I know how you're son feels and for my I have been taking back pain medecine for years and nothing seems to work on my neck and shoulders.

I'll say like Rylanesmom you should seek a Chiari specialist or at least a NL to look at you're son's results.

I'll put you im my prayers.

[Rylanesmom]

And for years I had some symptoms like cant lay on stomach and look up.  Head wants to explode when straining and thought nothing of it.  My symptoms have really progressed in the last year.  No meds touch my neck pain either or chiro (and not safe), physical therapy, or massage.  I will pray for your son.

[Rylanesmom]

I complained of that pain for over a year and know exactly what you are talking about.  I recently was diagnosed with chiari based on MRI with 9mm herniation.  Based on what others say he could still have chiari without tonsils below line causing cerebral fluid flow blockage and pain.  I would check not a chiari specialist.