My daughters having brain surgery
doorsjam
Posts: 38
I have posted on here a couple of times about one of my twin girls struggle with Tuberous Sclerosis.
We got the call today that she is a surgical candidate.
The epileptologists secretary called me at 9a this morning to tell me that Cassidy was being presented at the surgical committee today.
Dr. Lee called me at 2p to tell me that he is very optimistic that they can improve the quality of her life via brain resection/epilepsy surgery.
I cried. I cant tell you what a weight lifting off my chest is. Its like they are finally doing something other than trying different drug combos.
They still have exactly pinpointed the area that is causing the seizures. They know its the left posterior lobe which is where the motor strip is located. So when they do the grid placement she will actually have almost her whole left side of her brain gridded to see if they can find it more specifically. They said her case is a bit unusual for a TS kid because there is not a tuber near the area of brain where the seizures are coming from.
Dr. Lee said it was a very diffuse area and his concerns are that there is so much activity that if they do not do surgery that permanent damage may occur that will effect her motor skills.
As scary as the thought of my baby having brain surgery is this is very good news. Now I just have a wait until we hear from the neurosurgeon for the date.
We got the call today that she is a surgical candidate.
The epileptologists secretary called me at 9a this morning to tell me that Cassidy was being presented at the surgical committee today.
Dr. Lee called me at 2p to tell me that he is very optimistic that they can improve the quality of her life via brain resection/epilepsy surgery.
I cried. I cant tell you what a weight lifting off my chest is. Its like they are finally doing something other than trying different drug combos.
They still have exactly pinpointed the area that is causing the seizures. They know its the left posterior lobe which is where the motor strip is located. So when they do the grid placement she will actually have almost her whole left side of her brain gridded to see if they can find it more specifically. They said her case is a bit unusual for a TS kid because there is not a tuber near the area of brain where the seizures are coming from.
Dr. Lee said it was a very diffuse area and his concerns are that there is so much activity that if they do not do surgery that permanent damage may occur that will effect her motor skills.
As scary as the thought of my baby having brain surgery is this is very good news. Now I just have a wait until we hear from the neurosurgeon for the date.
www.caringbridge.org/visit/cassidyconway
Chicago-Regal Theatre 3/10/94
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Milwaukee Summerfest-7/08/95
Chicago-Soldier Field-7/11/95
East Troy-Alpine Valley 6/26/98 & 10/08/00
Chicago-United Center 5/17/06
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I hope everything goes ok for you guys, and I'll be thinking of her. I can't imagine the mix of emotions you must be going through right now. Good luck to you.
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I am terrified about this. It could be the miracle we were looking for or it could be a surgery that causes some other damage and the seizures still dont stop. But I just feel like we have to take the risk. She's only 3 but I keep thinking, she will never be able to get a drivers license which will then limit where she can work and where she can live. At this point I would be afraid for her to walk anywhere alone or ride a bike because if she had a seizure she could get hurt or disoriented.
Cassidy is a twin and it really effects Kiley too. Since Kiley was 2 yrs old she could tell when Cassidy was about to have a seizure and would come tell me. A 2 yr old shouldnt know that kind of stuff.
It broke my heart when we were at Notre Dame this mothers day and Kiley threw a penny into the pool to make a wish. I asked her what she wished for and she said "that sister gets better and stops having seizures". That sucks. She should have been wishing for toys or something. Not something as heavy as that.
So, yep, I will be posting in here because I will need all the support I can get going through this. But keeping the faith and positive thoughts that this is the right decision for our family and our little girl.
Chicago-Regal Theatre 3/10/94
Milwaukee Summerfest-7/08/95
Chicago-Soldier Field-7/11/95
East Troy-Alpine Valley 6/26/98 & 10/08/00
Chicago-United Center 5/17/06
My God. I have a 3 year old, but in no way could I possibly understand what you're going through. Your faith and family will lead the way in your decision, and I pray that will bring you peace.
Does Kiley know that a seizure is coming or does she know that something bad is about to happen to her sister (and assume that it's going to be a seizure because that's what usually occurs)? I've seen and read of quite a few sets of twins that have premonitions (for lack of a better term) when their twin is about to be in danger or is in danger, but they've never specifically known exactly what the danger was.
But I send you and your family my very best wishes , and I pray that all goes well .
9/9/06
Everton 3 RS 0
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Kiley doesnt know when a seizure is coming, I dont think. She just is really protective of her sister and notices right away if things arent right.
The obviously arent identical since Tuberous Sclerosis is a genetic disease and only Cassidy has it. They dont even look like sisters anymore :lol Kiley is a really little strawberry blonde with straight hair and Cassidy is 4 inches taller and 14 lbs heavier with dark curly hair. They are the loves of my life.
You can check out info about TS at http://www.tsalliance.org or more about Cassidy at http://www.caringbridge.org/visit/cassidyconway
Chicago-Regal Theatre 3/10/94
Milwaukee Summerfest-7/08/95
Chicago-Soldier Field-7/11/95
East Troy-Alpine Valley 6/26/98 & 10/08/00
Chicago-United Center 5/17/06
Claire Daines in an interview once said that she can remember being held as a baby. So, what I'm getting at is that she may need extra emotional support throughout her adolescence as a result of this surgery.
I can actually still remember the smell of the knock out gas I received as I lay on the operating table. It smells like a felt tip marker. I instantly remember being on that operating table every single time I pop the cap off of a marking pen to this day.
And the hospital food....I sent the nurse back to the cafeteria three times because the eggs were too runny. Only at Children's Hospital do the nurses wait on their child patients hand and foot, me thinks.
And then there's the opiates problem. She'll be exposed to opiates to manage the post-surgery recovery. This will set her up later in life to be more susceptible to addiction/dependency.
But, you see, this was 1981 and the go-go's had just released "Our Lips Are Sealed" and my nurse's voice sounded just like Belinda Carlisle's as far as I was concerned. And, believe it or not, that is the most pleasant memory that I take with me from that whole ordeal.
So, what I'm saying is basically that even at 3, I can only imagine how difficult this must be for her even though it will ultimately serve in her best interest.
http://forums.pearljam.com/showthread.php?t=272825