New here. Anyone not get headaches?

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New here. Anyone not get headaches?

Postby lisadoni » Mon Jul 30, 2012 9:02 pm

My son, 9, was just diagnosed today by his neurologist. Our journey began 3 years ago when seeking treatment for his behavior (ADHD), tics, and bed wetting. A sleep study showed obstructive sleep apnea and after going through a palette expansion he had a follow up sleep study in June. That showed improvement in the OSA, but an abnormal level of Central Sleep Apnea. The sleep specialist suggested the NL order an MRI to rule out Chiari. To our surprise he has a type 1 malformation of 24.98mm, but no sign of a syrinx as of yet. We are now waiting to see the sleep specialist, get a spine MRI (an unrelated visit to an endocrinologist showed scoliosis), and then meet with the Neurosurgeon.

Does anyone know of someone with a Chiari that was >18mm (arbitrary number) with no headaches and no syrinx?

As a side note, my sister in law (no blood relation to my son) had decompression surgery for her chiari last fall.
lisadoni
 
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Re: New here. Anyone not get headaches?

Postby Andrea » Tue Jul 31, 2012 6:41 am

I can't remember my degree of herniation off hand rightnow but I never got one headache. Have a very large syrinx though. The radiologist was amazed. No headache? No car accident? Wow! Hope everything goes smoothly for your son. I can only imagine the worry you feel for your boy
Andrea
 
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Re: New here. Anyone not get headaches?

Postby lisadoni » Tue Jul 31, 2012 8:26 am

Thanks Andrea for your concern, very appreciated.
He's never had any major head trauma. We were in a minor fender bender when he was a toddler, but he was in a car seat and it barely phased him. He was a preemie (34 weeks) and had some breathing problems, but I don't think any of that is related.

I assume you had decompression surgery? Or did they do something else just for the syrinx? How are you doing now?
lisadoni
 
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Re: New here. Anyone not get headaches?

Postby gunflint » Tue Jul 31, 2012 1:21 pm

First of all welcome!
One of the most sinister symptoms of Cm/SM to me is the fact that no two patients have the same symptoms. Andrea was fortunate enough to never get a headache and yet I was diagnosed with type 0 CM (I think that means less than 3mm) and yet took 9 to 12 ibuprofens a day for several years for headaches that I though were normal. I wouldn't get too caught up in comparing symptoms. The best advice that I received here is "above all else" find a NS who is experienced in CM/SM. My thoughts and prayers are with your family and your son.
gunflint
 
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Re: New here. Anyone not get headaches?

Postby Andrea » Thu Aug 02, 2012 8:25 pm

Yes I've had decompression and a shunt. I couldn't agree more with gunflint. Same condition many different faces. I hope you get answers soon. Update when you can.
Andrea
 
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