Cranial-cervical, Chiari, Swallowing, New Doc

[mkoven]

We have now returned to central Illinois, far from the more knowledgeable docs I got to see in DC. I posted earlier that I'd been diagnosed with cranial-cervical instability, with an abnormal clivo-axial angle (so I'm pinching my brainstem when I bend my head), and borderline chiari. The doc I saw in Maryland gave me a hard collar and said that if I were to have surgery, I would need not just a chiari decompression, but also a fusion of skull to c3.

Since then, I've developed some new troubles-- difficulty swallowing. It's intermittent, but it seems I'm always getting food down the wrong way and clearing my throat. I talked both to the geneticist and the nsg on the phone, both of whom said this is a related symptom. the geneticist wants me to have a swallow study and the nsg said this means I'm headed down a surgical path. geneticst says we need to make sure i don't aspirate.

I'm now scheduled to see Dr. Heffez (5 hours away) in ten days. I really don't want surgery, but it's also scary to think that I'm pinching my brainstem. the swallowing thing scared the $%^ out of me. i'm nervous that he'll be gungho about surgery or try to minimize how major it would be. but now i'm very aware of how bad I feel if I don't keep my head in precisely the right position.

this is all scary to me, esp as it seems this not a routine procedure, and not many people know what they're doing. throw in my allergies to a million meds, the dysautonomia that may or may not be related to the problems that might require surgery, etc. This will be nsg number 2. I really hope that he just says he's willing to follow me, manage me conservatively, be available if anything happens, but not tell me it's time. yikes!

[flop]

I hope you can have a good discussion with Dr Heffez so that you can understand the different options and decide what is right for you to do. Has the hard collar helped at all?

Flop

[mkoven]

the collar helps quite a bit-- which tells us that the instability is an issue. however, when i take it off, i often feel worse. it seems to make me more intolerant of any head movement. i've been wearing it about 3/4 of the time when awake (following nsg's rec). i'm trying to keep the muscles in my upper back/ around my shoulder blades strong to keep me head pulled back and not forward. the collar doesn't eliminate all symptoms- but improves them by maybe 70%? it's quite uncomfortable and I can't sleep in it-- getting some serious pressure marks on my shoulders, chest, and jaw. I hope that at the very least Dr. Heffez can fit me for a better, comfier brace!

I wish people would stop staring and asking me to tell them a good story about what's wrong with me. you'd think I had three heads. i'm not super vain, but a little!

[flop]

I hope you can get a better fitting neck brace. If it is making a big improvement in symptoms it might let you delay surgery for a while.

My sister was in a serious car accident when she was 5 years old and broke several cervical vertebrae (C2, C3, C4, C5). She was very lucky that she didn't sustain a cord injury (especially as she was lifted out of the car and given a piggyback ride whilst waiting for the ambulance).

She had a neck brace made especially for her. A technician came from a specialist orthopaedic hospital and made a plaster cast of her neck. He came back 2 days later with a solid flesh-coloured brace that went from under her chin to 1/3 way down her chest. She had to wear it for a year but looking back at photos now you often can't see the brace at all (I know from the angle of her head that she was wearing it as she was in a slightly odd position - looking downwards).

Hopefully you can get a more comfy ready made brace but you could always ask about a made-to-measure one.

Flop