Chiari and Syringomyelia Symptoms

When we found out about Rye having Chiari and syringomyelia and saw the list of symptoms associated with it, well, it was pretty incredible. Take a look at this (taken from www.asap.org). I'm going to put stars (*) next to each symptom Riley has had:

Symptoms of syringomyelia and Chiari are numerous and varied and may present in a number of different combinations. This list is not inclusive and does not suggest a diagnosis of syringomyelia or Chiari. See a qualified medical professional for proper diagnosis and treatment.

Syringomyelia

*Headaches and chronic pain (Riley does complain from headaches from time to time. He also says he gets tummy aches)
Loss of sensitivity, especially to hot and cold
*Muscle weakness and spasticity (Riley has lax facial tone in his cheeks. He's also pretty floppy at times)
Numbness in hands and feet
*Motor impairment ("Impairment" might be too strong a word. He does lack the skill to do things a 4 year old should be able to do, though)
Loss of bowel and bladder control
Osteoporosis and scoliosis
Paralysis or quadriplegia

Chiari

Severe head and neck pain

Headaches brought on by coughing, sneezing or straining

***Difficulty swallowing (Definitely. Riley used to drool constantly and still needs to be reminded to swallow at times. He currently drinks liquids mixed with Simply Thick, a gel that thickens liquids)

*Frequent gagging and choking (He had this more in the past but still happens occasionally)

Dizziness and vertigo

Balance problems

*Muscle weakness (See above in syringomyelia)

*Loss of fine motor skills (Same)

Poor hand coordination

Blurred or double vision

*Hypersensitivity to bright lights (He often complains of bright lights and the sun hurting his eyes. He very often asks for his sunglasses.)

Nystagmus (involuntary eye movements)

Difficulty in tracking objects

Tinnitus (buzzing or ringing in the ear)

Hearing loss

Vocal cord paralysis

Sleep apnea

What really blew our minds was that we finally had a concrete answer to go along with these issues Riley had. For years, really, the doctors figured there was something going on, but it wasn't until the MRI was done that we had any idea.

And thinking about it now, we're really quite lucky Marci was so adamant in getting an answer. If it were me, I probably would have bought into the "he'll grow out of it" explanation, and then, who knows? Maybe we would've never found out and Riley would've gotten progressively worse, until, as Dr. Ellenbogen said, he'd be in a wheelchair.

Ugh. It freaks me out just to think of that.