Chiari Surgery for Nicole

Hi, as many of you know I was diagnosed with Chiari Malformation this past May. This diagnosis has no cure and is considered a progressive disease. I am fundraising for a surgery I need that is only performed in Europe. As I lost my job last month and have no medical coverage, this is currently my only option. Treatment is offered here in the United States however it is an extremely invasive brain surgery that would require me to be off work for 3 months. The procedure in Europe is a much easier procedure that requires only an overnight stay in the hospital. I’d much rather try the less invasive route first rather than jump to an aggressive surgery as a first course of treatment. The procedure in Europe is called Filum Terminale Sectioning Surgery and those who receive this surgery have lasting and positive results. Please read my journey below and open your heart to help if you are able.

The biggest thing needed are prayers! Financial help would also make a major impact.

Chiari Malformation Type 1 is where the brain sits too low in the skull and rests in the opening of the spinal cord, compressing my brainstem. When this happens it restricts the flow of cerebrospinal fluid between the head and the spinal cord. There is no cure for Chiari Malformation and it is a progressive disease. As a result, it can cause multiple neurological issues. Some of which I’m already experiencing.

My symptoms began in 1998 with a racing heart. Over the next 25 years I would see every specialist you can think of…cardiologist, rheumatologist, urologist, gastroenterologist, ophthalmologist, dermatologist...so many I’ve lost track. The majority of the time I was dismissed with anxiety. It was beyond defeating to not have answers. Over the years I would have flare ups with symptoms that include numbness/tingling in my hands and feet, vision issues, tinnitus, swallowing issues, insomnia, major neck and back pain, memory issues, word slurring, and pains in my head that felt as if it would explode. For weeks in the summer of 2022 I was bedridden. My cardiac issues were out of control. Again I was told I was fine, to just relax. When I got Covid in March of 2023 this is what really set things off. My Vitamin B plummeted. I had no energy. I couldn’t stand up to get ready daily as I could before. My heart would race and my breathing became labored just from standing. I was having crazy pains in my head as if someone was squeezing it in rhythm with my heart. This is in addition to the neurological symptoms as well. I finally was able to get orders for brain and full spine MRI’s that led to the diagnosis of Chiari Malformation. As my doctor delivered the news of “your brain is falling out of your skull”, I was somewhat relieved to finally have an answer to all of my bizarre symptoms that I’d been experiencing for more than half my life. I was also diagnosed with EDS (Ehlers-Danlos Syndrome, a connective tissue disorder) and POTS shortly after. POTS (Postural Orthostatic Tachycardia Syndrome) is a blood circulation disorder causing me to feel lightheaded upon standing resulting in my blood pressure dropping and a large spike in my heart rate. It wasn’t until November, 8 months later, that I finally felt human again. Living in daily pain, unable to leave the house and having a diminished quality of life is not how I want to spend my days. I’m used to playing volleyball year round, being outside in the summer time and being able to walk up a flight of stairs without getting light headed. Being mentally and physically capable to the fullest capacity for Olivia is my goal!

Through help from a dear friend, I was able to get into a neurosurgeon at the Cleveland Clinic who recommended brain decompression surgery. This is a painful and invasive surgery that does not come without risks and complications. In a lot of the stories I hear from fellow Chiari patients who have had the decompression surgery their symptoms returned, new ones appeared, or the previous ones got worse. I have done a lot of research and even traveled to Cincinnati to get a second opinion. Both agreeing decompression surgery is what’s needed. Both decompression surgery and the European procedure help slow the progression and allow patients to lead a relatively normal life. It can take up to a year to fully heal from both surgeries.

After much prayer and research I have decided to pursue a less invasive surgery at the Chiari & Siringomielia & Escoliosis de Barcelona. The Institute has shown some amazing results. I’ve spoken with a family who has triplet daughters, two of which have Chiari. Both have had this procedure in Barcelona done. I’m inspired by their journeys and outcomes.

I am in the process of scheduling my procedure in Barcelona in April of this coming year, hopefully sooner. It involves a physical evaluation and lab work on day 1, followed by surgery on day 2. A one-night stay in the hospital is required. If all goes well, I will be cleared to travel home 8 days after surgery.

Unfortunately, this surgery is not performed in the US, therefore, insurance will not cover the procedures. All medical costs will be paid out of pocket by me. I’ve already paid for multiple MRI’s, and many other diagnostic tests to rule out other diagnoses. I’m fundraising to cover the out-of-pocket medical costs.

Anything you can donate to help make this a reality would be a great blessing. Any prayers would be welcome also, thank you!