Broc had an MRI of his spine. Dr Boaz said that its much better than a brain MRI as it can show different things. The brain MRI is still beneficial as it can show different things too. After looking at Brocs images Dr B came in and told us that Broc does have a significant Chiari 1 Malformation. He also noted that he has fluid in the bottom of his spinal cord which could be another marker or it could mean that he has a tethered spinal cord. He has not looked at all the images fully so this is just a preliminary dx. He did say that Broc would need to have decompression surgery. Really not the answer we were looking for but we know that the Drs and us are trying to give Broc the best quality of life possible. Dr Boaz will be calling us in the next couple of days to let us know if he found any more issues with is images and what the surgery plan will include. Brocs chiari also impacts his swallowing issues too.
On another note Lil Mark has been dx with aura migraines. He has been really miserable the last week or so. Wearing sunglasses most of the time and asking us to switch lights off. Dr Boaz is going to see if we can move Marks spinal MRI up too to see if he sees anything else on his images. Its possible that Lil Mark will need decompression surgery too.
Unfortunately Chiari goes along with Ehlers Danlos Syndrome and possibly 16p too. The sooner we can have them repaired the sooner they will get relief. Dr B said its better to dx them when they are little so that they can be repaired and there brain will have a better chance of growing properly and not getting squished.
As soon as we have a plan for both the boys we will let you know.
Thank you again for all your love and support.
Surgery is never the answer we want but at the same time it's a relief because it means something can be done to help. {{hugs}}
ReplyDeleteYes this was a big shock to us all as we never expected this to be the case with Broc as we are dealing with Chiari for his brother. I may be having 2 going through the same surgery.At least we know we have a great surgeon and team behind us.
ReplyDeleteIt seems as though every time we have testing for one thing, we find something else entirely.
DeleteI know.... its kind of crazy!!!!
DeleteBryce has a just-in-case referral to cardiology and neurology and I'm apprehensive about what unexpected things come up :/
DeleteOh my keep me posted please.Seems as if we are gonna be pretty busy this year.
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