Tuesday, April 13, 2010

Danica's Brain Surgery is Scheduled

This is a facebook post from October 21, 2009, a month after Danica was diagnosed.

Thank you to so many of you who have been praying for us and encouraging us through the last six months. In late April Danica woke up with a very crooked neck and pain (tortocollis) and since then we have been through lots of physical therapy, scans, botox, and finally an MRI on September 15th that revealed a Chiari malformation. Chiari Malformation is a serious neurological disorder where the bottom part of the brain, the cerebellum, descends out of the skull and crowds the spinal cord, putting pressure on both the brain and spine and causing many symptoms. Since the call with her results from the physiatrist we have done research on our own but have been kind've waiting in limbo for appointments with the neurologist (yesterday) and neurosurgeon (this coming Monday) at Akron Childrens. Although we were told she has the condition they did not give any details about the severity, etc. We knew because she has quite a few serious symptoms affecting her development that surgery was going to be in her future. We also scheduled an appointment in early December with a neurosurgeon at the Cleveland Clinic known for his work with Chiari patients. Since then I have not been able to eat much or sleep. I have felt like I am holding my breath just waiting to know how much more we have to deal with, and if can they fix her. Danica also began waking in the night screaming in pain and complaining of more pain since the botox injection on the 15th, something that was intended to help not hurt her. It's been a very long and tiring month.

Two weeks ago my friend Beth sent me an email with a flyer for a fundraiser for a little boy, Nicholas, who has Chiari and they needed to raise money to help him have surgery. I hadn't had any contact with someone else who was facing this with their child so I called the number on the flyer and eventually made contact with the mother on Monday night of this week. She went through their own journey and of course his case is different from Danica's in many ways but the three similar things are they have Summa PPO incusrance like we do, they saw Dr. Bartkowski, the neurosurgeon at Childrens, and Dr. Luciano, the neurosurgeon we have the appointment with in December at Cleveland Clinic. Not all neurosurgeons are experts in all disorders so when a hospital has one neurosurgeon--like Children's--it just makes sense he may not be an expert on Chiari. One thing in particular that raised my eyebrows was a comment from the neuro group when they called with the results of the MRI that Danica's tortocollis was probably not related to the Chiari. WHAT?!?!? My instincts told me this Chiari was exactly the cause and after my own research through many medical journals found it is one of the symptoms especially in pediatric cases. Her son had a new "less invasive" decompression from Dr. Luciano at Cleveland Clinic a year ago and now he is facing the need for another surgery. She said the Clinic was not warm and fuzzy like a chldren's Hospital and that his bedside manner was not good at all if that was important to us. So, I was feeling a little discouraged after our talk but also empowered to ask better questions and be the best advocate for Danica possible.

Sorry this is so long--I am getting to the point! Yesterday we met with the neurologist which was kind've a waste of time. She didn't even explain the scans to us, and it kind've came out of her own mouth that she didn't know that much about Chiari and the neurosurgeon would need to explain. Well, I had the name of a neurosurgeon at University Hospitals Rainbow Babies, Alan Cohen. They call him the "King of Chiari." I called his office thinking I was just not going to feel good about these two other appointments and needed a third opinion and totally expecting them to tell me his next appointment was in late December or even January. Well, from the moment his receptionist answered the phone I had this amazing calm feeling. I told her a one minute synopsis of Danica's history, and she put me on hold and came back and said, "You have waited long enough, I can double book you tomorrow with someone else. You need to see Dr. Cohen. Just bring her scans." Thank you God!

Today we went, and it was like no other doctor's appointment I have ever been to. He went over each picture and explained that Danica's Chiari is rare in that only one side (the left side) of the brain is 10 mm below where it should be. (Most people who have Chiari have it on both sides) He showed us how the flow of her CSF (spinal column fluid) to the brain was almost non existent on the left side. And then he said it makes perfect sense that she would pull her neck to the right to adjust the impingement on the left--trying to release the pressure and pain it was causing. The botox injection which was intended to relax that muscle on the right was actually relaxing her neck back into a painful position that was pinching the area especially in certain positions. I can't tell you how good it is to have something logical come out of a doctor's mouth--a real reason for all this pain and her deformity. So, he said her condition although not emergent was serious because something like a car accident or a fall or other injury could cause her to become paralyzed so we need to be very careful with her and get a decompression scheduled. I won't bore you with the details of decompression. It's scary but can be very successful. So he got out his schedule and we chose Friday, November 13th. She will be in the ICU following surgery for 24-48 hours and then in the hospital 5-7 days. She will have another full MRI under sedation the Wednesday prior to check her entire spinal cord for any pockets of fluid that can sometimes accompany this diagnosis. As we left the hospital and walked out into the gorgeous day I didn't know whether to laugh or cry, but I felt hope.

So, praise that we found this condition early (some people suffer for years without proper diagnosis) and for the timing of finding this doctor and his willingness to see her so quickly! Specific prayer requests would be for Danica's continued pain and safety until she can have the surgery. Please pray for our strength and health going into November so we can follow through as scheduled. Dan and I are working a lot and not sleeping much at all. We are trying to go away Friday night to rest. Pray this can really happen, and I can feel relaxed enough to leave Danica with my parents. Pray for sweet Delaney and her peace as we are away from her so much. She has been through so much beginning with our separation when I was pregnant with Danica, and it's hard on her. She has her own anxiety about all this. Lastly pray for the financial stress all this brings. We have learned over the past years that the only thing that matters is people. We need reminded to put all that obligation on the back burner and just focus on getting Danica well. Dan has very little time he can take off and I do not get paid if I don't work so just the logistics of surgery are difficult.

We know God is good even through all this. Even when we don't feel it we believe it! Love to you all!!! Your notes and sweet gestures through the past months have been such a blessing and at the perfect moment would give me the strength to keep going to all the appointments and getting up in the night.

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