Sarah's Journey to Chiari Institute in New York
On June 20, 2012, we found out that Sarah, a normal, "healthy" 8 year old has Chiari Type 1 Brain Malformation with the size of her herniation being approximately 18-20 mm.
Chiari Malformation is defined as 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.
Sarah has had what we thought were childhood migraines most of her life, and would vomit if over tired.. she was misdiagnosed for years but finally in May 2012, we were sent to a neurologist who ordered her first MRI and the Chiari was discovered. She had brain decompression surgery July 20, 2012 at UCLA.
There is NO "cure" for Chiari, Sarah will live with this for the rest of her life, and may in fact need further surgeries. We were just given the results of her 2 month post op MRI's and her post MRI does not look much different from her Pre op one.
We have decided to seek the help of the Chiari Institute in New York, where they specialize in Chiari and all related disorders. Upon reviewing her MRI's the Chiari Institute informed us that Sarah MUST have another surgery. It appears from the MRI's that she may have Basilar Invagination (Basilar invagination occurs when the top of the second vertebrae moves upward. It can cause the opening in the skull where the spinal cord passes through to the brain (the foramen magnum) to close. It also may press on the lower brainstem. The brainstem is a stalk-like part of the brain that connects the main portion of the brain to the spinal cord.) as well as Chiari, and the herniation from her Chiari HAS NOT improved. The reason is that at UCLA instead of doing a regular Posterior Fossa Decompression, which is defined as removing the bones in the skull to relieve pressure, they actually placed the bone BACK IN after performing the duraplasty and the C-1 laminectomy. NONE of the pressure in Sarah's brain has been relieved and her symptoms are now worse than before surgery. She used to have symptoms every 2 months or so, now it is every day.
Our Insurance has DENIED our request to go to the Chiari Institute in New York and see the specialist there that can help Sarah in every aspect of her diagnosis and provide her a quality of life she deserves.
We appealed the denial to go to the consult and they denied that. They have informed me I should be "happy" they allowed me to go to UCLA and have to stay with them.
We only want the best for Sarah so that she can lead as normal life as possible, she wants to go to college and she wants to be a brain surgeon to help others like her. If this continues, she won't even be able to go to school let alone hold a job, she can't make it through a day of third grade without a headache that knocks her down for several hours.
We ask from the bottom of our hearts, help us get our baby girl to New York to the specialist that can help her and help relieve her of the symtoms, they can't cure her, there is no cure, but they can relieve the symptoms and we can hope and pray she can have the life she is meant to have.
Surgery went well, they finished quicker than expected, they removed the pieces of bone from the back of her head that should have been removed the first time .. Her head was positioned properly and then placed into her spinal column and screwed into place with purple screws :).
anyone can email me at anytime ! Sarah and our whole family are so grateful for all the wonderful messages that are left here for her!!
We are at North Shore Community Hospital, 300 Community Drive, Manhasset, NY 11030. She is in room 303A in the Pediatric ICU ...
She loves purple, jewelry (bracelets, necklaces etc) coloring, makeup, nail polishes, shoes! She is dying for us to buy her these blue high heels she saw at Burlington coat factory! LOL She is a size 2 kids shoe.. She's a fashion diva as well.. Size 10 clothes .. And of course cards with notes of love and encouragement :). After we check out we will be at the Ronald McDonald house of Long Island, room 306. Again we thank you for every prayer and love that we have been surrounded with!
She is sleeping now.. Rough getting her out of bed, her heart rate skyrocketed , she screamed and cried she can't she can't .. She wheezed and got dizzy an said she couldn't feel her arms or legs (nurses said normal) but all of this was stressful on her and us! Afterward though, after they made her sit for a while, once she got back into bed she was actually more perky and talked to her sisters in Florida so that was good and hoping when they get her out of her bed later it will be easier ...
Her surgery is now just a mere 15 days away, reality is here, I can't hide from it, and though I try not to, I am beginning to worry. She is just 8 years old, she has already had to endure a 5 hour surgery that failed, now she has to endure an even longer one and have pins and screws and who knows what else put into her to hold her little head on her spinal column"¦ Just saying that out loud (or writing it down) makes me cringe with the thought. I envision the first time she woke up from her last surgery and she was so swollen and scared and she cried so hard, and the pain was so bad, and she was so sick to her stomach as she came out of anesthesia, it breaks my heart to think she will go through this again, and that it may be worse since they have to manipulate her head and spinal cord and brain stem. It seems unreal that saying these words I am in fact talking about our own precious little girl!
I just ask for your continued prayers for Sarah, for our family, for our safe travel as we leave for NY on the 15th"¦
In addition, pray for Timothy, Sarah's brother, as well. I am worried that he may have Chiari too as the last time we were in NY he vomited for a few days for no apparent reason, and he has started to complain of headaches recently. I am starting a diary for him of headaches and trying to see if he only tells me he has one if Sarah does (like maybe he says it to try to get attention). The vomiting is my huge concern as that is what Sarah used to do when she was stressed, and Timmy did that when we were gone and he has started to gag and sometimes get sick in the mornings, and he vomits in his sleep on occasion"¦ all symptoms of Chiari and article after article have come out that Chiari is in fact hereditary. I took him to the doctor of course (just like I did countless times for Sarah) and even with Sarah's history, the doctors did not want to test him yet, which frustrates me, but I will get through Sarah's surgery and if Timmy continues to present symptoms I will begin Timothy's Fight as well.
We will be having a breakfast fundraiser at Applebee's in Henderson, NV on Stephanie and Sunset on January 13th at 8 am to 10 am. Applebee's cooks the food and our family and friends serve everyone who attends. The tickets are $10 each for a pancake breakfast and we get $5 of every ticket sold (If you hadn't heard, my insurance totally denied Sarah going to NY so I had to drop her off of my insurance, and even though Sam's pays a portion 60/40, for the doctor and 90/10 for the hospital, the doctor is not contracted so anything above "reasonable and customary" that he charges, we are responsible for and there is no "cap" on that amount) If you can come to breakfast we would love to see everyone! Tickets can be sold in advance, just contact me! That way Applebee's knows how much food to prepare, but you can come on the day of the event as well and eat, so don't let it stop you from coming if you didn't buy a ticket in advance. ïŠ
We would love to fill Applebee's and send Sarah off to New York surrounded by people who love her, pray for her and support her!
God Bless and hope you all have a great New Year!
our prayers and thoughts go out to all the families in CT. Our hearts are heavy and we are on our knees praying for comfort for all those involved, who have lost loved ones, children, parents, and the first responders who are on scene. God Bless them all and please we ask for you to pray for them all as well.
My daughter has Chiari as well and just had surgery 7 weeks ago. Now all the symptoms are back and getting worse. We were told about New York so if possible could I ask a few question. Our Facebook page is daddy and daughter brain surgery or you can contact me personally at email@example.com I know nothing about New York since I live in Texas but we need a second look too.
Jennifer and Sam, Our prayers are going out for all of you. Sarah will definitely be in our thoughts and prayers always. It hurts me to hear what this beauiful little girl has to go through. We will pray that Timmy doesn't have Chiari. Give Sarah a big hug please. If there is anything we can do to help please let us know.
Jen, I have tears in my eyes as I type this after reading your latest update. Poor Sarah. I hurt for her. Thank goodness Sam's insurance will help defray some of the costs. Those doctors in LA should be hung. They obviously didn't do the surgery right or she would not be suffereing worse then she was. My thoughts and prayers are with. I know first hand what you are going through. God will be with Sarah every step of the way. Please give her big hugs from me.
Hi Jennifer! i Hope your little daughter Sarah feel better soon, my 9yrs old daughter has Chiari type 1 too, God Bless your Beautiful daughter. Prayers
So happy to hear that you are able to go to New York for a consult. I will keep you all in my prayers. Hopefully the weather will cooperate by then. If there is anything we can do please let us know. I feel so so bad for Sarah having to go through being so sick. She is such a beautiful little girl.
We head out to UCLA tomorrow in hopes that the doctor there will see Sarah's need to go to the specialist in New York .. Please keep her in your prayers as we travel and meet with those who hold a huge part of Sarah's future in their hands !