I guess it's time for me to start blogging on a daily basis. I need to be able to keep my thoughts together, and to keep people updated without spending double the time to do it.
Some of you are from my forum family and already know. Others are just stumbling upon my blog. So, here's a post I made to my forum family on Friday, April 27, 2007.
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Early this morning we had Angela's appointment with the neurologist. Since her MRI was done a couple weeks ago and I hadn't heard anything, I'd decided that "no news is good news". And then a few days ago I realized...hmm...when her EEG was done they called me in a couple days to say it was normal. When her EKG was done they called me in a couple days to say it was normal. I haven't heard boo about the MRI....and now I know why.
I really didn't think it was possible, but what Angela has is worse that MoyaMoya disease.
In Moyamoya disease, there is a narrowing (sometimes blockage) on the internal carotid artery in the brain. As the narrowing progresses the brain, being in short supply of blood and oxygen, will start to create new blood vessels that kind of search out new blood supply. When this happens they can do a procedure, (very basic explanation here) that gives the brain a new blood supply to leach onto to. It's major neurosurgery.
So, as an infant Angela was found to have a narrowing on her Right carotid artery. But there was no revascularization, however her SYMPTOMS followed those of MMD. We've watched her all these years. About 3 or 4 years ago she started having TIA's (transient inschematic attacks, which are basically like mini-strokes.) but her MRI showed now changes in either the narrowing or revascularization, leaving everyone puzzled.
About 4 weeks ago she started having what are called "Tripping spells". Apparently these spells are indicative of a new blockage, so we repeated the MRI.
The MRI results are devestating.
Angela now has a significant blockage on her LEFT carotid artery that was not there before. It is WORSE than the original blockage on the right. There is NO revascularization going on. THAT is the worst part of all. If there were revascularization starting, we'd have an operable situation. Without the revascularization, the problem blood vessels that are located in the brain stem are not operable.
In the 4 weeks since the Neuro last saw her, Angela's gait has changed significantly, and it's because the right side of her body is now affected as well. Her speech is somewhat more difficult to understand. Her pupils are uneven. She is very tired. He said the behavioral issues are most likely because she ALWAYS has some level of a headache, and the escalations are problably when she's at more of a migrain level.
He is contacting the Neurosugreons in Boston and Mayo who specialize in MMD and have more experience with the disease in kids with DS to see if they have any thoughts. All of her records are being sent to each of them. All the rest of her symptoms fit MMD, the narrowing on both the left and right Carotid arteries fit MMD, but the lack of revascularization has him puzzled.
Angela's biggest risk right now is a massive stroke. A massive stroke on the left side of the brain at the level of the brain stem will not be survivable.
I am in shock and numb. I have known for years there was something more happening. In the last month my stomach has been in knots knowing that there is something more. But I expected him to say the MMD had progressed to the point where it's time to do the surgery. I didn't expect to be told it's likely there is nothing they can do.
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