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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.

Comments

( 11 comments — Leave a comment )
mlerules
Nov. 21st, 2008 08:58 pm (UTC)
Oh, it's nice to KNOW something so you can work on managingn it w/PT & pain control. May you get back with/to your life soon and smoothly. *gentle hugs*
vixenesque93
Nov. 21st, 2008 09:00 pm (UTC)
That's wonderful!
tedgill
Nov. 21st, 2008 09:24 pm (UTC)
Wow, while it's not the best news possible it's so much better than it could have been. And now that you know what the map looks like you can begin, as a magician, to change it.
bioentropy
Nov. 21st, 2008 09:35 pm (UTC)
The certainty of knowing must be a load off!

Good luck on that settlement. Hopefully it will allow you more freedom in the way you choose to spend your time from now on.
blk
Nov. 21st, 2008 09:52 pm (UTC)
Direction is a fantastic thing.
x_bluerose_x
Nov. 21st, 2008 11:14 pm (UTC)
*hugs* Best of luck to you, and glad you have a good doctor. :)
oscuridad
Nov. 22nd, 2008 01:51 am (UTC)
What a relief to know what's going on. Frustrating that it won't be going away, but knowing what the issue is, that is a huge step. An inevitable descent into pain and paralysis would have been bad, I'm glad that your prognosis does not include that!
coraline
Nov. 22nd, 2008 05:54 am (UTC)
knowledge is a wonderful thing. i'm glad you've got some info and a plan to move forward...
andi_sunrider
Nov. 22nd, 2008 07:54 am (UTC)
That is great news, that it should not foreseeably get worse. And how rewarding to have a doctor who will listen to your concerns and not talk down to you! Hopefully his referral will be as great to work with to help you move forward with adjusting to this.
shoebox_bird
Nov. 22nd, 2008 12:01 pm (UTC)
I'm glad you have a plan for moving forward, and I hope the physical therapy helps. I've known a few people with severe back problems who were really helped by it.
queenofhalves
Nov. 25th, 2008 12:41 pm (UTC)
i'm glad to hear that.
( 11 comments — Leave a comment )

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