Blair’s Battle with EDS & CCI
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Over the past two years, Blair literally became a bobble head.
She fought unbearable brain fog and other symptoms long ignored, simply attributing it to burnout from working fulltime while attending law school at night. Not knowing any better, Blair kept on going. She graduated from Brooklyn Law School in May of 2017, and by March of 2018 she had accepted a business and legal affairs position with Sony Music. Unfortunately, just one month into her dream job, she collapsed.
That was the weekend it all came crashing down and life changed as we knew it. Blair was now suffering from debilitating “screwdriver-imbedded-in-the-brain” type headaches and could no longer ignore that something serious was going on.
Six months later, Dr. Paolo Bolognese, a trailblazing neurosurgeon fluent with Blair’s rare connective tissue disorder Ehlers-Danlos Syndrome (EDS), finally had answers to our questions and help to offer. Dr. B explained that in order for Blair’s neck to be able to support the weight of her own head, the failed connective tissues in her ligaments would require structural support from titanium hardware that would attach from the base of her skull to her top two vertebrae during a procedure called a craniocervical fusion (CCF).
The neurosurgeon then showed her images from a recent diagnostic MRI that distinctly showed the extreme angle of her limp neck, and how it was causing her occipital ridge to tilt, literally sending her brain sliding down her spinal column like ice cream dripping down a cone on a hot summer’s day. She was constantly at high risk of stroke or death, and everything could have changed in the blink of an eye. While we knew that the CCF would not cure Blair’s EDS, it would offer the greatest chance for her to regain a functional life and learn to manage the symptoms and comorbid conditions attendant with EDS.
Blair was scheduled for the procedure on September 20, 2018, but without warning, her insurance carrier declined coverage only one day before her surgery. Despite numerous attempts by her neurosurgeon with the carrier through peer reviews and multiple tiered appeals that stretched out for nearly a year, all medical evidence was ignored, and the insurance carrier continued to deny the CCF procedure.
Over the next few months the ligaments supporting her neck weakened to the point of collapse. Blair was quickly deteriorating and found herself experiencing progressively excruciating symptoms. She lost feeling in her head and neck, suffered multiple concussions, battled daily headaches, chronic neck and shoulder pain, hip/shoulder/neck/back/knee/finger/wrist subluxations, mind-numbing brain fog, difficulties with her memory, blurred vision, fainting spells, and the repetitive transient inability to recall words or even familiar locations.
In little more than a month, Blair declined from being bedridden with a limited ability to walk a block’s distance, to a complete invalid who required help with all of her daily activities. Furthermore, her trachea, kinked and misaligned from the further collapse of her neck, soon left her unable to swallow food, forcing her to subsist on nutritional shakes and other soft foods.
The final and third appeal (an external appeal) was Blair’s last chance – and that was terrifying. It was submitted in February of 2019 with a hope and a prayer, and incredibly, after the fight of our lives, the insurance company’s denial was ultimately overturned! We were victorious and knew that we had won thanks in no small part to Blair’s incredible attorneys at Community Health Advocates (CHA), and the support of the New York State Attorney General’s Office and New York Senator Kirsten Gillibrand. Blair’s ordeal and subsequent successful appeal have set a precedent for future patients with similar rare medical conditions, and with any luck, will influence major insurance carriers to write criteria to address them.
Blair was finally able to undergo her CCF surgery this August 2019. At the time of this post she is just two weeks post-op but is already recognizing tremendous improvements in several of her symptoms. Each day brings more hope and excitement not only for Blair to improve function, but quality of life! Although, there is still a long road ahead with many challenges to overcome, Blair feels encouraged and has so much to look forward to for the first time in a very long time.
Blair is facing a year-plus long recovery that will include necessary but costly medical care including a specialized physical therapy protocol, weekly home nursing visits, and the support of many out-of-network specialists. We won a huge battle with the CCF surgery, but we are still in the midst of a war. As a result of the significant surgical delay, Blair’s recovery timeline doubled due to her markedly deteriorated condition. If she’d had the original surgery, the recovery would have only been 3-6 months. That said, Blair still has a lot of challenges ahead and knows that she will not be able to return to work as soon as she had hoped. Without enumerating the already overwhelming accumulation of medical costs and related expenses, just covering the basics can be difficult.
If you are so inclined, any donation to Blair’s GoFundMe page would help and be appreciated more than you know. We also intend to raise awareness for others with invisible illnesses such as Blair’s through this endeavor. Thank you for taking the time to read this and for your support.
Lots of love,
Ann & Chrissy (Blair’s mother and sister)
Please follow Blair's Journey on Instagram!
She fought unbearable brain fog and other symptoms long ignored, simply attributing it to burnout from working fulltime while attending law school at night. Not knowing any better, Blair kept on going. She graduated from Brooklyn Law School in May of 2017, and by March of 2018 she had accepted a business and legal affairs position with Sony Music. Unfortunately, just one month into her dream job, she collapsed.
That was the weekend it all came crashing down and life changed as we knew it. Blair was now suffering from debilitating “screwdriver-imbedded-in-the-brain” type headaches and could no longer ignore that something serious was going on.
Six months later, Dr. Paolo Bolognese, a trailblazing neurosurgeon fluent with Blair’s rare connective tissue disorder Ehlers-Danlos Syndrome (EDS), finally had answers to our questions and help to offer. Dr. B explained that in order for Blair’s neck to be able to support the weight of her own head, the failed connective tissues in her ligaments would require structural support from titanium hardware that would attach from the base of her skull to her top two vertebrae during a procedure called a craniocervical fusion (CCF).
The neurosurgeon then showed her images from a recent diagnostic MRI that distinctly showed the extreme angle of her limp neck, and how it was causing her occipital ridge to tilt, literally sending her brain sliding down her spinal column like ice cream dripping down a cone on a hot summer’s day. She was constantly at high risk of stroke or death, and everything could have changed in the blink of an eye. While we knew that the CCF would not cure Blair’s EDS, it would offer the greatest chance for her to regain a functional life and learn to manage the symptoms and comorbid conditions attendant with EDS.
Blair was scheduled for the procedure on September 20, 2018, but without warning, her insurance carrier declined coverage only one day before her surgery. Despite numerous attempts by her neurosurgeon with the carrier through peer reviews and multiple tiered appeals that stretched out for nearly a year, all medical evidence was ignored, and the insurance carrier continued to deny the CCF procedure.
Over the next few months the ligaments supporting her neck weakened to the point of collapse. Blair was quickly deteriorating and found herself experiencing progressively excruciating symptoms. She lost feeling in her head and neck, suffered multiple concussions, battled daily headaches, chronic neck and shoulder pain, hip/shoulder/neck/back/knee/finger/wrist subluxations, mind-numbing brain fog, difficulties with her memory, blurred vision, fainting spells, and the repetitive transient inability to recall words or even familiar locations.
In little more than a month, Blair declined from being bedridden with a limited ability to walk a block’s distance, to a complete invalid who required help with all of her daily activities. Furthermore, her trachea, kinked and misaligned from the further collapse of her neck, soon left her unable to swallow food, forcing her to subsist on nutritional shakes and other soft foods.
The final and third appeal (an external appeal) was Blair’s last chance – and that was terrifying. It was submitted in February of 2019 with a hope and a prayer, and incredibly, after the fight of our lives, the insurance company’s denial was ultimately overturned! We were victorious and knew that we had won thanks in no small part to Blair’s incredible attorneys at Community Health Advocates (CHA), and the support of the New York State Attorney General’s Office and New York Senator Kirsten Gillibrand. Blair’s ordeal and subsequent successful appeal have set a precedent for future patients with similar rare medical conditions, and with any luck, will influence major insurance carriers to write criteria to address them.
Blair was finally able to undergo her CCF surgery this August 2019. At the time of this post she is just two weeks post-op but is already recognizing tremendous improvements in several of her symptoms. Each day brings more hope and excitement not only for Blair to improve function, but quality of life! Although, there is still a long road ahead with many challenges to overcome, Blair feels encouraged and has so much to look forward to for the first time in a very long time.
Blair is facing a year-plus long recovery that will include necessary but costly medical care including a specialized physical therapy protocol, weekly home nursing visits, and the support of many out-of-network specialists. We won a huge battle with the CCF surgery, but we are still in the midst of a war. As a result of the significant surgical delay, Blair’s recovery timeline doubled due to her markedly deteriorated condition. If she’d had the original surgery, the recovery would have only been 3-6 months. That said, Blair still has a lot of challenges ahead and knows that she will not be able to return to work as soon as she had hoped. Without enumerating the already overwhelming accumulation of medical costs and related expenses, just covering the basics can be difficult.
If you are so inclined, any donation to Blair’s GoFundMe page would help and be appreciated more than you know. We also intend to raise awareness for others with invisible illnesses such as Blair’s through this endeavor. Thank you for taking the time to read this and for your support.
Lots of love,
Ann & Chrissy (Blair’s mother and sister)
Please follow Blair's Journey on Instagram!
Organiser
Blair Lamendola
Organiser
Rego Park, NY
