Monday, August 16, 2010


I realized that I might have people checking this blog for Cheyanne updates. We've started a blog for her and her travels. Please add her blog to your list! And feel free to share with your friends. The more that know about her plight the more tolerance will spread for disabilities.
She'd LOVE to have you say hi!

Thursday, August 12, 2010

Chey's Test Results

Today's appointment went well. We got a lot of useful information BUT we are still no closer to "fixing" the problem.
The recorded seizures were very clear. Unfortunately, they still consider the area too big to go into and blindly operate. The seizures originate in the Parietal lobe.
"The parietal lobe is a lobe in the brain. It is positioned above (superior to) the occipital lobe and behind (posterior to) the frontal lobe. This area controls sensory and small motor..." Which kinda explains Cheys issues in some areas. A positive.
Where does this leave us?? Pretty much in the same spot as before the test. So here are the options they gave us.
1) The Dr.s still want the MEG imaging. I got precise clarification on this today. An MRI takes pictures of the brains "electric" waves. The MEG takes pictures of the "magnetic" waves. These are more fine tuned waves. Like the difference between a movie ( MRI) and a 3D movie (MEG). So they want to re-push United Health Care with updated test results to try to get them tocover this. If they won't...
2) We pay for the MEG. Approx. $10,000-12,000. .... Oh yes. Let's just do that because I have that right here in my purse. (very heaving sigh) I wonder if I could hold a bake sale?
3) We forgo the MEG and go in and do the "mapping". To "map" this area means that she would be put under anesthesia, open her skull, place all those electrodes from the video EEG she just went through directly on her brain, tape her up and let her sit in bed, take her off her meds and wait for her to seize again. 3-5 seizures. Again. Some people don't feel those things on their brains, others are in so much pain they are morphined till they seize and have enough seizures the drs are sure what to cut out in the surgery. --ssssaaaawwweeeeaaaaattt! Where do we sign up?? (yes I am totally sick to my stomach by this point).
4) We forget about brain surgery and we go for the VNS (Vegas nerve stimulator). This is basically a pacemaker for your major nerve. Every 3 +\- minutes an electric pulse is sent out and has been proven to help with seizure control. The success statistics: 2%-3% become seizure & medicine free. 60% have a decrease in seizure activity and are able to cut medicine needs. 25% are able to have more control but have to stay in meds. 15% it does nothing for. - lovely news! Thanks for that hope. (insert eye roll here)
5) We do nothing. When her seizures become worse again we can change medicines. 2 new ones have come out and there's about a 20% chance they might work. - Cheyanne is on her 11th medicine/ combo. Remember she's had seizures for 9 years. Yep the medicine is really successful! Whatever.
I do need to let you know the brain surgery success rate. 85% become seizure free. 10% the seizures become maybe one a year and significantly decrease in duration & intensity. 5% have little to no change. - I just LOVE statistics. They are yummy friends!! But I appreciate the honesty of my doctors. They really inform us about everything and then give us their suggestions. And I do like the fact that they sound hopeful, positive, and want in running every test to see this thing at as many angles as possible before we jump into ... Well... Her.
So what do we do? No clue. I really don't. No option is prefect. When we ask Chey she says " I just don't want to be broken anymore. Whatever it takes to make them go away." wow. What do you say to that? We try hard to make her understand that "they" may never go away... But we don't want to dash hopes of normalcy either. I think both Joe and I are slowly giving into the "this is as good as it's going to get" mentality. The mentality of big celebrations of small milestone reached and kept is where we are at. Like she can remember how to tell time on a clock but doesn't understand its passing around her. But it is truly hard to accept that your child, who you love to death but are trying to teach to be self sufficient, is never going to be able to be that...... Free.....

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