The short version is that I'm going to need an expensive series of surgeries on my neck and several days in the hospital to start fixing these problems and get back to living my life. However, my insurance isn't willing to cover any portion of it because my neurosurgeon is in another state, plus my mom was recently let go from her job ... which really puts us in a bind.
For the longer version, and more of why I am asking for your help, please continue to read below ...
Ehlers-Danlos Syndrome (EDS) is a genetic disorder that causes a very important protein in my body, collagen, to be made wrong. Collagen is a major part of the “glue” in our body – the connective tissue. In a normal body, connective tissue is strong yet elastic, so all of its parts stay together when it moves like it's supposed to. In a body with EDS, however, nothing is held together properly. Someone with EDS has to deal with all of their joints dislocating multiple times a day, with their blood vessels and organs stretching more than they should (which causes problems with blood pooling where it shouldn’t be and organs not emptying at the proper rates), with their skin/tissue being damaged easily and healing slowly, and with an overwhelming amount of pain … just to name a few. There are many risks EDSers face each day, and all of us fears “getting worse,” especially since the disease is still poorly understood by most doctors.
Well, I got worse.
After getting my Master's degree in 2013 I moved to Arizona to start my career and my life. In the matter of a few days after a bicycling accident, I went from working more than full-time, hiking 10 miles every weekend, rock climbing several times a week, living independently ... to barely being able to stand, having a crushing headache all the time, not being able to take care of myself or my apartment, and having many strange neurological problems and seizures. None of the doctors in my area could give me an answer for this, so I moved back to Ohio with my mom, where I was passed around Cleveland Clinic and still had no answer! At the end of October 2014 I finally got to see a specialist in Maryland, the renowned and beloved Dr. Fraser Henderson -- and he not only gave me answers, he also gave me a plan.But that was good news AND bad news.
Basically, the ligaments that hold my vertebrae together are so loose and elastic that they allow these vital bones to slide away from one another when I move my neck, which puts lots of force on the disks and flattens them, pushing them out into the surrounding space. This makes my spinal canal much narrower than what it should be, so my spinal cord and brain stem are being pinched and poked every time I move my head, causing irreversible damage to my nervous system that will only get worse over time without surgery. This is called stenosis, and mine is severe. I also have instability between my C1-C2 and C4-C5 vertebrae, which creates even more problems! For those who know medical terms, I have been diagnosed with Cervical Stenosis (C2-C5), Cervical Myelopathy, Cervicomedullary Syndrome, Atlantoaxial Rotatory Instability, C4-C5 Instability, and Gastroparesis.
… So what are we doing to fix all of this? (This is where you come in!)
Expansion Laminoplasty (C3-C5): this surgery cuts the back part of each vertebra and props it open with a piece of titanium, which expands the spinal column to give my cord more room.
Laminectomy (C2,C6): this procedure will remove the back parts of my vertebrae at these two levels (again to give more room).
Fusion Stabilization (C4-C5): this surgery takes out the bad disk between the bones, replaces it with an artificial one, and uses a bone graft and more titanium to keep the bones together. (This is the worst level of instability, and we are hoping I can avoid fusing C1-C2 for many years or altogether.)
Dr. Henderson has done over 500 of these operations, all of them successful and without complication. This means he also knows how to properly put stitches into the fragile skin of us EDSers and how to put screws into our delicate bones (bones have collagen too) … plus he is a pioneer in this field, and the nurses in his hospital wing are very experienced in how to help EDS patients with their unique problems during their post-op stay. This is why I firmly believe he should be the one to perform the procedure. I may settle when it comes to the brand of coffee I drink, but I will not settle when it comes to a major neck surgery!
The procedures alone costs $32,000 ... However, for someone who is self-pay like me, they charge only a $7,500 deposit. Fantastic! But, the hospital charges $20,000 for the first night (also a mandatory deposit) and $10,000 every night afterwards, not to mention the anesthesia fee, other medications, costs of lodging and food for my mom, and travel expenses.
+ 20,000 hospital 1st night
+ 10,000 hospital 2nd night
+ 10,000 hospital 3rd night
+ 5,000 anesthesia
+ 5,000 misc.
Every little bit helps!!! I hope you will consider helping me and my family afford these surgeries. Thank you so much in advance if you do. I hope that someday soon I can update my story and say I'm well and active, and pursuing my dreams again because of your generosity. Blessings and health to all of you who took the time to read this. I wish I could hug each and every one of you.
- Kathy Colvin
- Sarrah Hannon
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