Heather Keith Freeman (jnanacandra) wrote,
Heather Keith Freeman

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Whew. Ok. Processing....

So, we saw the neurosurgeon this morning. Lots of information that I'll be processing for a while. There's good news and bad news, but far less bad news than I was bracing myself for.

Yes, the syringomyelia (SM) in my thoracic spine is causing my symptoms. Yes, it is almost certainly due to the accident (though that's not 100% provable without an MRI taken before the accident).

It is not operable.

It is not going to go away.

HOWEVER, chances are very slim that it will get worse. And while I should use common sense as far as activities that aggravate my back go, I would have to work pretty hard to do anything that would actively make it worse.

This means that with proper pain management (the Lyrica I recently switched to is already working wonders), I should be able to get my life back.

I have to say that Dr. Ellenbogen was one of the best doctors I have ever seen. He was friendly, clear spoken, and very *focused* on me not just as a patient but as a whole person. He answered all of my questions fully and clearly without impatience and without patronizing me. He even supports alternative therapies (though he doesn't think chiropractic care is a good idea for me)!

Apparently I was the first patient ever, of the thousands he's seen with this condition, who knew the myth of Syrinx. I may have made his week with that :)

So, cutting out the chiro. Continuing physical therapy, most likely - it's not going to cure the SM, but strengthening my back may help me work around it more effectively. He's referring me to another doctor for regular pain management and other areas of health that he says are more important for me to pay attention to now - unfortunately with a chronic neurological condition, my naturopath isn't going to cut it.

I should get MRIs, full spine, no contrast, every two years or if my symptoms worsen. I should go back in to EB if things get significantly worse.

I can even get pregnant again safely if I choose to - it won't make the SM worse, though I may have worse back pain from the pregnancy that I would otherwise.

Upshot of all this is that I can move forward now with a reasonable idea of what to expect, and my future does NOT include an inevitable descent into pain and paralysis. Our lawyer may even be able to start working on the final accident settlement.
Tags: accident, health, syringomyelia, update
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