Monday, August 25, 2014


Sunday morning… my list is full of things to do, I glance at my email… and there it is, the email I have been waiting for. Its amazing how one thing, can change the course of a day… even your life. 
Our neurosurgeon said the scans looked great… that there was great flow. But, the only thing on the scan that is not completely normal other than her surgery, was that she has "retroflexed odontoid process". This is what I have been worried about, we have always know the possibility of her having this was there. This is actually what Mason has… but you have to remember Mason does not have Chiari. Nor does he have symptoms… the only thing Mason struggles with is his Apraxia Speech, which is a oral motor planning issue caused by a neuro issue… Retroflex Odontoid can cause motor planning issues. 
Back to Kay… so, basically we need to keep better track of her symptoms. I know they are happening a lot more often than I ever tell people, or that I log. I have kind of slacked on logging her symptoms… b/c things were going so well. So, I have revised the way I log symptoms, one day I will talk about this more. Our NS suggested that if symptoms are getting worse to get a cervical spine MRI with flexion and extension. I will be talking to our pediatrician about all of this, and possibly getting the MRI now as a baseline. 

Whats all this lead to… well, there will probably come a time where she needs another surgery, a cervical fusion to be exact. This is the surgery that my friend Amy just had, that I have talked about in previous posts. This surgery really goes off some measurements and her symptoms. So it may not be this year or next… we really need to take this one step at a time. But I can say her probability of needing to have one in the future is high. 
So below, I have posted 4 of her MRIs… the top two, is before surgery, and 3 days after surgery. 
Bottom left is 3 months after surgery, and the bottom right is a few weeks ago(2 year post op). Then there is a single one below the group of them… that again is her 2 year post op one. 
On the 2 year post-op one there is a purple arrow pointing to the area of concern… that is your C1 & C2, The best way I can explain all of this, is basically your C2 is turned backwards (formed this way due to a connective tissue disorder, like EDS) and then the C2 b/c it is turned backwards it compresses the brain stem area. I have talked more about this under "Basilar Invagination" the top tab on my blog, when Mason was diagnosed. Terms used with all this is cranial instability, basilar invagination, retroflex odontoid… 
So, that's whats going on…. even though we will be facing another surgery one day…. this time its different. Yes, yesterday I was upset, but I have know about this for the last 3 weeks…. I think what is upsetting is that there is always a glimmer of hope that since you aren't the doctor that you might be wrong… but when you hear back from them… its finalized. That's the upsetting part. I think it almost a curse either way… knowing too much information on a condition, and at the same time not knowing enough…. either way, it always hits you like a ton of rocks! 
We will keep you updated! 

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