Monday, August 3, 2015

The Ever-Ebbing Journey: not that, but this!

Here we go again! Always a diagnosis, yet never quite understanding the true nature of it or what remains undiagnosed. This afternoon, I received my copy of my most recent MRI of the lower lumbar. The UCLA doctor, who is an MS specialist, ordered this test as a final diagnosis differentiation as she had already ruled out MS and settled on Radiation Necrosis (brain damage from radiation).

I received the report too, and this was also copied to all my doctors. Yet nobody has called me about it. My only gripe is that I called and left a message with the ordering physician a week ago and she still has not contacted me. 

The results are ominous, saying a lot of gobbledygook that I had to look up, the MRI was taken without contrast because insurance wouldn't cover with contrast so I'll probably have to do that again. But the MRI did indicte spinal cord disease...something called "cauda equina for LMN syndrome." I'll let you look that up to find out what it means, but from what I've read it's pretty serious, like needing emergency surgery serious. Ugh. Causes are likely due to the bulging discs in the lower lumbar region, protruding 3 mm into the spinal canal, indenting the ventral thecal sac and contacting the L5 nerve root. Also there is lateral recess narrowing and borderline spinal canal stenosis. There are a few other findings, but I know less about them and will not bore you. 

When I looked up this condition, I find that it's a medical emergency and the earlier surgery can be performed the better the prognosis. How soon from onset of symptoms? Oh just 8-48 hours! That's when I cried. It's been a year and a half of the game of differential diagnosis and I'm losing. If only we could start with the most rare and emergent of diagnoses' then move up the line, instead of starting with the most mundane and moving down the line. I would have found this much quicker and could have prevented so much damage. Hopefully, it's not too late. But it feels like I need to find an excellent spine surgeon immediately. If you know of one within the L.A. to Santa Barbara area please let me know!

Of course, all of the above is based on what I read in the report and I know nothing except what I've read and not necessarily as it relates to my case. My real next step is to get in touch with the ordering physician, the neurologist at UCLA, but she didn't return my call last week. That's VERY frustrating! Until we talk to her there's no next step, but I still want the name of a good surgeon or spine specialist just in case because a year and a half of waiting, (well searching), has made things worse and I want to be ready for anything.

The NIV Bible puts Luke 1:37 this way, "For no word from God will ever fail." In the NKJ version it says, "For with God, nothing shall be impossible." Both are true and mean the same thing. It is God's word that I rely on because without it, without Christ's love, support and guidance, I'd feel pretty upside down and absolutely frustrated! I admit, I am frustrated, but not absolutely so.

From 2 Peter 1:2-3 
"Do you want more of God's kindness and peace? Then learn to know him better and better. For as you know him better, he will give you, through his great power, everything you need for living a truly good life: he even shares his own glory and his own goodness with us!" 

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