My sister Bonnie Oliver was diagnosed with Complex Chiari Malformation, Craniocervical and Atlanto-axial Instability and Ehlers Danlos Syndrome type three in 2018. It has been a long and wearisome road to these answers, and our family has watched her health decline for over a decade, with a marked downturn over the past six years. She can’t leave her home without help from a walker and preferably one or two helping hands, and even with that level of support she cannot be out for long. The following is a description of her malady and the additional financial burden that the solution entails, provided by her husband, who can explain the problem better than I.
“Chiari Malformation is a condition that is typically congenital, in which the cerebellum descends through the foramen magnum (the hole at the base of the skull). The cerebellum is then essentially being pinched/ crushed by the bone on one side, and the spinal cord on the other. Obviously, this is very dangerous, and has already had serious neurological ramifications for Bonnie. In her case, while the Chiari is dangerous, the other complications from Ehlers Danlos Syndrome that can occur with Chiari are even more dire. Bonnie has been diagnosed with instability in her cervical spine, due to Ehlers Danlos Syndrome. Her brainstem is being compressed by her C2 vertebrae (which in her specific case is a very dangerous and rare kind of instability called basilar invagination), and she has instability at her c1 and c3 vertebrae, that puts her at risk for dislocations at any time.
Both Chiari Malformation and Ehlers Danlos Syndrome have no cure, but there is a surgery that can potentially help Bonnie. In order to prevent further nerve damage, and impending paralysis or death, she needs to have a relatively complex surgical procedure. The neurosurgeons will be both decompressing the Chiari Malformation (by removing a portion of her skull and her top vertebrae), and permanently fusing her cervical spine from skull to C3, using titanium hardware and a metal plate attached to her skull. This will relieve the pressure on her brain, brainstem, and spinal cord. She may also need additional surgeries in the years to come, as the neurosurgeon suspects she may have a tethered spinal cord, and most EDS patients who have certain levels fused typically need additional fusions in the future.
We will have to travel in order for Bonnie to receive the care that she needs, as there are no neurosurgeons near us that specialize in the surgical treatment of both Chiari and EDS. We have already traveled to see Dr. Sunil Patel in Charleston SC (he originally diagnosed her with basilar invagination), and Dr. Fraser Henderson in Bethesda, Maryland, who confirmed both the diagnosis of Chiari made by the Cincinnati neurosurgeons and the instability diagnosed by Dr. Patel, as well as the surgery that would be necessary to treat both. She has one more appointment with a specialist neurosurgeon in New York on February 11th, and after that appointment we will be booking surgery. Hopefully, according to the surgeons’ schedules, she would be having surgery in late March or early April, 2019.
This surgery will not only save her life, but potentially give her back some of the quality of life she has lost. The doctors say there is a 50-60% chance that she will regain some of what she has lost back (feeling in her legs, hands, better balance, better cognition, less nerve pain, less difficulty eating/swallowing, less weakness, less pain).
Travelling for surgery means that the costs will be significantly higher than if she were able to have treatment locally. The estimated hospital stay is anywhere from 8 days (3-4 in ICU, 3-4 reg floor), up to 2 weeks (if she needs longer, they will discharge her to a rehab facility or home healthcare). We were told to expect to be away from home for a month. The doctors and hospitals are all out of network for our benefits, which again means costs are higher. With travel, lodging, food, physical therapy (which she will need at minimum 3x a week for 6 plus months), surgeon’s fees, hospital fees, rehab fees, and my missing a month of work, we are looking at an astronomical financial cost. And, that cost does not include the money we have already spent for her testing, appointment’s, multiple MRIs, and initial travel to see the specialists.”
My desire is to help my sister in any way I can. Being a man of modest means and resources, aside from being there for her and assisting whenever possible, there is little I can do alone. However, with help, I intend to do more. I was able to get in touch with a number of writers, all of whom have donated their time and effort and art for an Anthology of short stories, entitled “Impossible Hope”. Anyone who donates through here will receive a copy of the book as a thank you for their generosity. All of the money you donate will go to paying for the costs of the surgery and what it will take to get Bonnie and her husband there and back again. We ourselves will cover the costs of publishing the book, and once the book is published, all proceeds from it will go to the Ehlers-Danlos Society for the benefit of those like my sister. https://www.ehlers-danlos.com/ All those who donate through this effort will receive their copy before we officially publish the material.
Stay tuned for updates on just who all is contributing material to the Anthology and our publishing date, and I thank you very kindly for your support.
- Paul Pfenninger
- Erin Furby
- Benjamin Wheeler
Organizer and beneficiary
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