Cover expenses of surgery and Travel
Donation protected
Hi,
My name is Ben Mayer, in case you don’t already know me. The last three years my health has steadily declined due to complications in my spinal cord and neck as the result of a connective tissue disorder called Ehlers Danlos. Add insult to injury I got thyroid cancer during this time and had to have my whole thyroid removed and thankfully thats under control.
The issue at hand is that my neck and skull has become so unstable as the result of damaged and stretched ligaments that it is causing both a stretching of my brain stem and compression. The diagnosis is called craniocervical instability and Basilar Impression aka basilar invagination. The result is intense pain that radiates down my spine, muscle weakness, tremors, autonomic dysfunction, breathing issues, Orthostatic intolerance, and extreme waves of panic and anxiety. When my muscles begin to get tired my head begins to feel overly heavy and will sometimes just drop to my chest. The constant stretching and compressing of my brainstem is slowly damaging my nervous system. Basically it feels like my head is bobbling around like one of those bobblehead dolls. I dont have words to describe how horrific it feels to experience this day in and day out or how badly this has affected my mental health and sense of safety.
For the last two years I have been bedbound for more than half the day, Ive lost weight due to the constant stress of navigating life with a head that basically doesn’t feel attached. i am constantly tired, and having to fight my body all day it seems. Ontop of the diagnosis listed above I am suspected of having a tethered chord, which is basically a spinal cord that has become stuck causing a pulling and stretching on the nervous system. My spine essentially feels like its being yanked downward toward the floor most of the day.
Currently there are no doctors in Texas to treat this issue as it is very rare and only a few surgeons in the whole country will treat it and I do not have an inusrance plan that covers out of state to see these doctors.
This has led me to seek care from another world renowned neurosurgeon in Spain who would be half the cost of what it would cost in America out of pocket. He has reviewed my case and imaging and has confirmed that I am a surgical condidate and has invited me to Spain for more testing and surgery. I trust this surgeon and have done extensive research on him and his credentials.
There are two surgeries that are being offered. The first one is a Craniocervical fusion. This would entail fusing my craniocervical joint to the first two vertebrae in my neck, thus inhibiting the excessive movement of my skull and strain on my brain stem. Basically they are going to fuse my skull to my neck.
The second surgery is a tethered cord release which would entail snipping a specific part of my spinal cord to free it from being stuck.
I would have to travel to spain and be there potentially for 6 weeks before I would recover enough to return home.
I am reaching out to raise funds for all of this because it is going to be a huge financial burden. overall if both surgeries are performed it is going to cost a little more than $100,000.
I have tried every means to get better aside from this surgery over the last two years and have had little success with anything. This surgery would hopefully create enough stability in my neck which in turn would give me a chance to rehab my body back to a state where I am able to achieve a better quality of life and not have to suffer so badly.
The breakdown of cost is as follows:
If Testing reveals tethered cord the surgery including hospital stay for 5 days postop and all testing comes to 32,000 euro. The Craniocervical fusion with 10 day hospital stay, all pre and postop testing etc comes to a total of 75,650 euro. The total if both surgeries are performed would come to a total of 107,650 euro. That would be $116,565 dollars. This cost breakdown does not include travel expenses and hotel expenses as I have yet to figure out the cost. Again, these surgeries are not cheap but the cost of doing them in Spain versus America is significantly cheaper as I do not have Insurance that will cover me to go out of state and receive care from the proper American doctor, and to do so out of pocket would be astronomically more expensive.
Every donation matters no matter how big or small and would mean the world to me. Thank you very much for taking the time to read this. If you would like to learn more about what it is that is going on with me i have attached links to information on tethered cord, craniocervical instability, and basilar impression.
Organizer
benjamin mayer
Organizer
Dallas, TX