Heather’s Heroes
Donation protected
On January 5, 2022, Addyson had a partial corpus callosotomy.
*Corpus callosotomy is a surgical procedure used to treat atonic seizures, also called drop attacks, by dividing all or part of the corpus callosum. The corpus callosum is the bundle of nerve fibers that connects the two brain hemispheres.
This surgery was terrifying! Prior to her operation, it was discovered she has a bleeding disorder, Von Willebrand disease. The excessive bleeding is why the doctors were unable to complete the procedure so instead of a COMPLETE callostomy she received 3/4. The surgery itself was a success, it was geared to reduce/eliminate a specific tripe of seizure, drop seizures. Addys drop seizures have gone from not being able to count how many in a day to extremely infrequent. It’s been amazing!!!
PRIOR to surgery she was weaned off of a seizure medication because of bleeding risks for the surgery and about a week after this complete medication wean Addyson developed Tonic Clonic/Grand Mal seizures. She had never had one previously. After a few weeks of healing they reintroduce her body to that medication and it did absolutely nothing!!
These new seizures are completely out of control and possibly puberty is to blame but nevertheless more than ever my girl needs your prayers. There are days the school was reporting 10 plus of these seizures, just while she was at school. It’s not just happening every day but multiple times a day.
So what now?
VNS, vagus nerve stimulation. Vagus nerve stimulation (VNS) is a type of neuromodulation, which is a treatment that alters the activity of nerves. Vagus nerve stimulation involves implanting a device that sends regular, mild pulses of electrical energy to your brainstem through your vagus nerve in your neck
On July 1st we meet with a team of specialist at Cincinnati Childrens to confirm Addyson is a candidate for this surgery, hear more about it and sign consent forms. They see the urgency in this and have cleared time up on July 5th for this procedure. We will confirm the surgery date on 07/01 and I will keep everyone posted.
I do know I am going to need major prayers for Addyson and myself.
Every donation has kept me and addy financially stable during these times.
*Corpus callosotomy is a surgical procedure used to treat atonic seizures, also called drop attacks, by dividing all or part of the corpus callosum. The corpus callosum is the bundle of nerve fibers that connects the two brain hemispheres.
This surgery was terrifying! Prior to her operation, it was discovered she has a bleeding disorder, Von Willebrand disease. The excessive bleeding is why the doctors were unable to complete the procedure so instead of a COMPLETE callostomy she received 3/4. The surgery itself was a success, it was geared to reduce/eliminate a specific tripe of seizure, drop seizures. Addys drop seizures have gone from not being able to count how many in a day to extremely infrequent. It’s been amazing!!!
PRIOR to surgery she was weaned off of a seizure medication because of bleeding risks for the surgery and about a week after this complete medication wean Addyson developed Tonic Clonic/Grand Mal seizures. She had never had one previously. After a few weeks of healing they reintroduce her body to that medication and it did absolutely nothing!!
These new seizures are completely out of control and possibly puberty is to blame but nevertheless more than ever my girl needs your prayers. There are days the school was reporting 10 plus of these seizures, just while she was at school. It’s not just happening every day but multiple times a day.
So what now?
VNS, vagus nerve stimulation. Vagus nerve stimulation (VNS) is a type of neuromodulation, which is a treatment that alters the activity of nerves. Vagus nerve stimulation involves implanting a device that sends regular, mild pulses of electrical energy to your brainstem through your vagus nerve in your neck
On July 1st we meet with a team of specialist at Cincinnati Childrens to confirm Addyson is a candidate for this surgery, hear more about it and sign consent forms. They see the urgency in this and have cleared time up on July 5th for this procedure. We will confirm the surgery date on 07/01 and I will keep everyone posted.
I do know I am going to need major prayers for Addyson and myself.
Every donation has kept me and addy financially stable during these times.
Organizer
Heather Benton
Organizer
Cincinnati, OH