Just a few Questions...

[olsonkids4]

My ds had a rough day yesterday, mentioned the headaches often.  Kept telling me that it was his fault his head hurt cause he didnt drink enough water.  I think at the very beginning of him telling me his head hurt I told him water was important for hydration.  He was barely 4 and still remembers that, that doesnt help me with my guilt that I feel.  I should have fought harder to find out what was going on with him, 14+ months was too long.  He also was saying yesterday that his back was hurting, kept having me rub it.  Should I be prepared that they will see something on spine MRI on tuesday or could his back hurt without having a syrnix or the cord problems.

Thanks for listening..

Stephanie

[chadry]

This is just to make you feel a little better about the water thing. When my DD first started to complain of the headaches and dizziness a few years ago we were told to have her drink more water. So we did and the headaches and dizziness continued on and off. Not as frequent as she has them now but they were still there. Then she was checked for other things and that was all normal.That was when her Ped. said enough was enough and sent her to a neurologist who found the Chiari. I still tell her to drink more water. You are not alone with the water route.
Take care.
Chadry

[selmaS]

I am not sure, but I had a chest xray as well...I had a weird fused bone in my rib cage....not sure if that is chiari or EDS......

But so happy u got the rest of the testing scheduled!!

[olsonkids4]

Ok so I just confirmed with our insurance that the MRI has been approved and they said yes for a spine, head and chest.  Why do they need the chest what would he be looking for??

[selmaS]

His back may hurt if he has bowel issues......reflux ect...the bloating can cause back pain....being constipated can also.....keep track of his evacuations ...size , frequency ect.....same thing with the bladder......

But chiari in general can cause muscles to hurt...all over....plus if he has an issue with balance it could be from over compensating....

"selma"

[*Stormy*]

I had and have bad pain in my neck and back as well as loss of feeling in my limbs and they never found a syrinx on my MRI. So...I think just the blockage and then the pressure that results from it on your spinal cord can cause those symptoms.
It is good to be prepared though but it doesn't mean it is absolutely certain that he does. I hope he starts to feel a little better!
Carolyn

[shanmomof3]

Hi stephanie! What i did, because i had back pain too, was prepare myself that there might be a syrinx and tethered cord. Then when they said there wasn't i was relieved! But i could have handled it if it was bc i had prepared for it. Mine is from cervical stenosis and DDD, but thats just me. Blessings ~ Shannon

[olsonkids4]

thank you so much for responding.  So sorry you are going through this, as I am learning this is a horrible condition that only a few people really know that it exist.  I am keeping my fingers cross that the spine comes back normal and he can have the lessor of the 2 surgeries next friday.

Stephanie

[rod44]

Hi Stephanie, as your DS has Chiari it is possible he may have a syrinx, however my experience with a syrinx is that it causes loss of feeling in your limbs and back below where the syrinx is located. My first symptoms were loss of feeling in my lower legs and down my back bon from the level of the shoulders. I first became aware of this about 10 years ago and because it was slow to progress I did nothing about it. I even thought it was my imagination at times. The pain I started having started about five years ago after a car crash witch I feel aggravated my condition. The pain is mostly in my shoulders and neck and I cant say if it is due to my CM or the Syrinx. I first went to the doctor because of dizziness and balance issues and was diagnosed with a number of congenital spinal  problems after an MRI last year.

A full spinal MRI is I feel important for any one with CM to rule out any other congenital anomaly's or Chiari related issues.

Ray