“If you are always trying to be normal, you’ll never know how amazing you can be.” – Maya Angelou
Here is her story:
In October of 2016 Lauren began having stabbing head pain. It came out of nowhere and was so strong that it sent her to the ER multiple times for multiple days. The Drs could not figure out what was causing this telling us everything from Autism to migraines. We saw too many specialists to count on one hand until we finally found a Chiari Specialist in NY. Dr. Greenfield. He has been the only one to identify why we think she's having this happen to her. She has Chiari Malformation. It basically means her brain is slipping into her spinal column and putting pressure on her brain stem. Her herniation is only 3.5mm (which in not traditionally when they would call this Chiari which is why we've had so much trouble finding a doctor who could help her). There are experts in the field that are working hard to get the measurement classifications changed. They believe its symptoms, not a measurement that should indicate the need for intervention. These stabbing head pains were lasting 10-15min 20+ times a day until they were just all day/every day. Because of this she missed nearly 3/4 of her 5th grade school year. After her second Spinal Tap in December, they were able to discover that she had high pressure and diagnosed her with Psuedotumor (basically her body is acting like it has a brain tumor but they cannot find the source). After removing some fluid and starting a diaretic, she was headache fee for almost 6 weeks! She went back to school and started to plan her birthday. Then, her stabbing head pain returned. In May, she had Optic Nerve Sheath Decompression surgery (Basically they cut slits behind her eyes to drain the fluid). Just like a spinal tap, that procedure is a temporary fix. They did it because laurens vision was declining rapidly. Her vision now is 20/100 with prescription glasses so they know that there is something else going on and they are working very hard to figure that out before her stabbing head pain returns (still no headaches at this point). One of the things still on the table is that the Chiari Malformation is causing all of this (Dizziness, Nausea, Vomiting, Headaches, Numbness, Trouble sleeping etc...). Due to her having Ehlers Danlos Syndrome, Hypermobility type (Basically her body doesn't make collagen like the rest of us and her joints come out of place easily), there are some complications in how to best help Lauren next. The EDS is causing instability at her C2. So, our care team has decided Lauren needs to wear a cervical collar for 6 weeks to simulate the decompression and fusion surgery. If her body responds well to it (Improved sleep, less body numbness, less pain in her neck, etc...) then it would indicate that she would be a candidate for surgery despite her herniation being only 3.5mm.
This poor girl has been through so much and as a mom it breaks my heart. It absolutely sucks that she has to wear a collar to school, let alone at the beginning of her middle school career where she knows absolutely nobody. We have pushed it off 2 weeks to allow her time to make a few friends but it's C-DAY. This Thursday my girl will start this trial. She is being so brave and says she is ready! After lots of research, we are too!
I share this story because there are others out there going through the same thing. Hunting for answers as to why they themselves or their babies are in pain. Lauren's case is very complicated (something we keep hearing over and over), but we have hope. We have found experts in the field and travel across the country to see them. I have joined support groups and research like crazy. We have even made a friend who will also be starting this trial soon. Awareness is key. Unfortunately there aren't a lot of doctors in Texas that we were able to connect with that are as up to date and comfortable with this diagnosis and her co-conditons. Many told us some pretty hard to hear things simply because they weren't educated on the most recent research in this field. So, to all you mama's out there doubting yourself, I want to remind you to trust and believe in your gut feelings and don't ever let a doctor undervalue your opinion. I urge you to keep pushing for answers and seek as many second opinions as it takes to find the answer. And when you feel like you want to give up, dig deeper and push harder. Find your inner mama bear and fight! <---words a wise mom told me at my lowest point through all of this.
Thank you for hearing my daughters story.