To say it has been a long, complicated, painful road for Brittany Valvo would be a massive understatement. The 27-year-old has quite a story. After living in severe pain for years, she is now doing well – but, it came at quite a cost. The cost of a neurosurgeon to be exact.
Brittany is no stranger to pain. She’s lived with debilitating pain for a very long time.
In 2012 she was diagnosed with Trigeminal Neuralgia which is also called the “suicide disorder” (unfortunately, many commit suicide due to the intense pain this disorder causes). Brittany calls it horrific, “The disorder would cause extremely bad pain in the right side of my face, feeling as though I had someone stabbing me in the face almost constantly. Everything would trigger the pain; eating, the wind hitting my face, a makeup brush, the water in the shower touching my skin..etc. I needed to go to a specialist in Baltimore at Johns Hopkins to have my first brain surgery. It turned out that I had a massive vessel compressing the nerve that led to my face.”
Brittany faced it all with courage and grace. She followed doctors orders and went on with life – but her nightmare was far from over. About 3 months following surgery, in June of 2014, Brittany started experiencing a wide array of severe symptoms that doctors couldn’t explain at the time, “I was having severe headaches, pressure in my head, neck pain, severe memory loss, loss of use in my arms and hands, ringing in my ears, loss of hearing, “fireflies” in my vision…the list goes on…all things that were severely impeding my ability to live my life and things just kept getting worse with time.”
“The doctors wanted to have more MRI’s completed and I was actually invited by Dr. Raymond Dimadian, the inventor of the MRI, to travel to his headquarters in Melville, NY so he personally could complete upright MRI testing on me at his facility,” Brittany explains, “Upright imaging is not available in Buffalo and is very hard to get done so this was a very rare and amazing opportunity. After having much more testing completed, the doctors realized that my brain had started descending quickly into my spinal canal, therefore blocking almost 100% of the cerebrospinal fluid that needs to enter the brain area and “smashing” my spinal cord and brain stem therefore causing all of the physical and neurological symptoms I was experiencing.”
This was all associated with a very rare condition called – Chiari (key-are-ee) Malformation. A condition Brittany had been diagnosed with years ago, but didn’t have many symptoms. Until now. The condition is so rare, few doctors treat it. Brittany searched for one locally, but didn’t have any luck. Her pain worsened, her quality of life was going downhill quickly. But, she kept hope alive and continued her search for help – even as her condition worsened.
That’s when she found Dr. John Oro. A specialist who was based in Colorado, “He had actually retired the year my symptoms started to get very severe (2014) and at that time he was my only hope and the only person my primary doctor and I would have trusted to complete my surgery. Throughout the few years I was searching and kept trying to figure out what my next step was, Dr. Oro was completing research, travelling and teaching other doctors and unbeknownst to me, he was preparing to open a specialized clinic focusing solely on Chiari. I received information last year that his new clinic was opening and I immediately figured out a way to get in contact and schedule an appointment. I flew to Colorado in July and left there with a surgery date set for August. We couldn’t wait any longer to have surgery due to my symptoms and the imminent threat of having permanent damage to my body because of how bad my malformation had become. Dr. Oro explained the severity of my case and that he had high hopes of being able to help me get better.”
Surgery was a success.
Brittany spent weeks in Colorado followed by more recovery time at home. But, much of that recovery time was spent writing letters. Brittany’s insurance company refused to cover the cost of the surgery with Dr. Oro, “I have been writing and compiling evidence, letters from physicians and specialists, gathering reviews and writing explanations so that insurance could fully see the entire picture of what I have been dealing with for the past few years and then would hopefully agree to an out of network exception to cover the neurosurgeon. I ended up writing 30 pages and also compiled 18 different attachments and sent my appeal mid April. About 2 weeks ago I received a letter from insurance stating that they are still denying my request to pay for my surgeon.”
Brittany isn’t giving up. She’s planning to write another appeal. It’s a monstrous task that she is faced with and she knows that she is not alone,” It saddens me that so many other people out there are dealing with similar issues that can be ten times this depth and are fighting for their lives while fighting with these monster insurance companies.”
Brittany continues work to heal her body. It’s a long road, “The doctor had to remove part of my vertebrae, detach my neck muscles, put a titanium plate with screws in my head and then reattach the muscles. I have been able to regain significant motion in my neck but it’s still a work in progress.”
This young wife and step-mom is incredibly grateful to her support system – which is pretty great, “My parents and husband have been on this entire journey right by my side every step of the way. They all flew with me and stayed the entire duration of my recent surgery trip.”
But it was more than that, “I had a lot of very low points pre and post operatively where I couldn’t see the “light at the end of the tunnel” and I felt like I couldn’t keep going, I was just so down and out. When you are in the midst of a tribulation of a substantial size, it can be so hard to focus on your progress and the finish line. All of the people in my life kept me going on a daily basis and consistently helped me to have faith that it would all work out. When I was down, people stepped in and lifted me up and for that I am forever grateful. The selflessness I experienced during this journey was one of the most amazing things I’ve ever seen, it’s difficult to even explain but I have such a strong admiration for all of the people that surrounded me. Since I have been feeling better, I’ve been trying to pay it forward to help others to feel the same way that I did when I was going through that hard time and it truly is such an amazing feeling.”
Now Brittany is on a mission to help those who are diagnosed with rare conditions, knowing how lonely it can be.
“Once I started being very vocal about my journey via my Facebook page and instagram, people started contacting me almost everyday telling me that they
were also a Chiari patient or that they had a family member they wanted me to talk to,” Brittany explains, “By making those connections, we are all able to help each other and to share our knowledge, research and experiences and more importantly, we can uplift one another with the connection that we share. I know how hard of a struggle it was for me while trying to deal with the symptoms of this terrible malformation and if I can help others in their journey then that fills my heart up so full!!!”
We are certainly hoping Brittany’s health insurance provider, United Healthcare, reconsiders and pays this bill.
If you would like to help Brittany with her medical expenses, here is a link to her Gofundme Page.
Gofundmepage – https://www.gofundme.com/brittanys-chiari-road-to-recovery
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