Emily's Pineal Cystic Brain Tumor Surgery
Organized by: Jill Kuty
Jill Kuty via Crowdrise
September 27, 2015
EVENT DATE Sep 23, 2015
In February of this year our 15 year old daughter became very ill after having suffered for several months with headaches and severe dizziness. She was hospitalized and put through a battery of tests, one being a head CT which showed that she had a cyst on the pineal gland in her brain. We were told that this was an incidental finding and that it was not the cause of her severe symptoms. After discharge she had an MRI which indicated that the cyst was about 12mm, but because she had braces they weren't able to get a really clear view. Em went through a battery of tests in different specialties (ENT, Neurology, Audiology, Cardiology and PT) and everything came back normal. The pediatric neurologist said it wasn't the cyst, it must be migraines or depression, or better yet, she's faking it for attention. I was able to convince the pediatric neurologist to order another MRI in May (because Em's braces had been removed) which showed that the cyst had grown slightly and was also now showing mass effect on the tectal plate with internal septation. Once we got these results she said she had to refer us to a neurosurgeon even though the cyst was not the cause. I called the 3 names she gave us, they did not treat pineal gland cysts. I had done some research in February and found Dr. Dong Kim's webinar through the Memorial Hermann website. All of the symptoms described were the same as Emily's. Emily found a support group on Facebook for the parents of pediatric pineal cyst patients. Many of these children had already had surgery with Dr. Kim or were in the process of getting in for surgery. We had nothing to lose by sending in our medical records and MRI scans for review by Dr. Kim so in Mid-May I overnighted everything to his office. The following week I had a phone call from his office requesting more information so that they could schedule a phone call with us. On May 28th we had our call with Dr. Kim's medical staff and after 45 minutes of going through symptoms, medications and lots of questions we had an appointment scheduled for July 28, 2015. Our PCP immediately submitted a request for authorization for the appointment with Dr. Kim because there are no neurosurgeons in the state of Florida who treat pineal gland cysts or perform the surgery to remove them. Our insurance carrier, Florida Blue, denied the request stating there were in-network providers but refusing to provide a list, only stating that I could obtain that list from the website. We appealed that denial and in our appeal clearly stated that we had printed the list of in-network and out of network neurosurgeons in the state, called every one of them and not one indicated that they could or would treat or perform surgery for a symptomatic pineal gland cyst. Many wished me luck in finding someone in state. Late last Thursday Florida Blue denied our appeal again stating that there were in-network providers, we still do not have the written denial, nor the form to request an external review. Now we are left with trying to self pay the surgery that Emily needs to get her life back. Our appointment with Dr. Kim was amazing, he and his team know what they are doing, they knew how to examine Emily, spoke to us about ways to help her eyesight so that she can try to finish her online classes before surgery. Dr. Kim told Emily that he can help her, that she can get her life back. Most patients (roughly 95%) have immediate relief from the severe symptoms they suffer from. These symptoms include inability to sleep, severe vision disturbances, vertigo, spinning, double vision and depth perception issues. She also loses the vision in her right eye at times. She has a constant headache (pressure that intensifies and at times can be a sharp stabbing pain) that never goes away and there are many more symptoms. Emily is a beautiful 15 year old girl who was in the middle of her first year of high school and was taking riding lessons (English) every Saturday morning and working towards competition riding. Doing all of those things girls do at 15....then it all stopped. While I have resisted starting this fundraiser, with the recent denial from Florida Blue we are left with very few options. The cost of self pay is approximately $50,000.00, which must be paid prior to surgery. We have already been blessed with friends up in Michigan who brought me to tears with a card and gift cards to help with our expenses in Houston next month. If you are inclined to donate for Emily's surgery we thank you. If you are not able to donate we would welcome prayers and good thoughts. If you are able please add Emily, Dr. Kim and his team to your prayer lists at church. As Emily's mom, I thank you for taking the time to read what is probably a long rambling paragraph, those that know me will laugh because it takes me a while to get to the point - I love my children with all my heart - this girl needs her life back and I am determined to make that a reality for her with Dr. Kim's skill and expertise and the love and support of all of her friends and family members.