A mother's note...

I am finally getting a chance to get on here.  This is Marci. I have been busy today.  Steve and I took Emily to her appt. at UCSF this morning at 9:00.  We didn't leave there until about 1:00.  We met with Dr. Ostrem, Emily's neurologist, and she evaluated Emily and videotaped her movements as she does at every visit.  It is important to know the places that Emily is currently having symptoms so they can target these areas in the surgery.  Dr. Starr joined us during the appt. with a "fellow" who is learning along side Dr.Starr.   Dr. Starr spoke to us about what to expect tomorrow.  I will tell you briefly what will happen so you have a little idea of what will take place.

A metal frame will be placed on Emily's head, and Emily will have an MRI.  After the MRI, Emily will be taken to the O.R.  The doctor makes two small holes in the head. One for each system.  Two systems, will be implanted because Emily has dystonia symptoms on both sides of her body.  Emily will be under general anesthesia and will not feel anything.  When the appropriate spot in the brain is located, a wire (lead) is passed into the brain and held in place.  The metal frame can then be removed. The wires will connect to an neurostimulator which will be programmed about a week after the surgery.  Emily will have a remote for the device and will be able to turn it off if she wants to (like when she is sleeping).   We have consented for Emily to be a part of a research study which allows the doctors to track the effectiveness of the device.  We dont have to do anything different for this.   I am so grateful for wonderful and brillant physicians.  These are the best in the world and I couldnt have more faith in them.  I will keep you posted all day tomorrow.  We need to be at UCSF by 6:00 am so I should probably get some sleep, if that is at all possible!   Thank you to all of our family and friends for their ongoing support and for friends of friends and our family who have shown so much concern for Emily and our family.   We cannot thank you enough for your positive thoughts and prayers.   And to my wonderful daughter, you are strong, you are amazing and I can't wait to see you dance again. 

Posted by Marci