Help Get April's Neck and Brain Fixed!

Updated 10/23/22

Hello, I'm April and I've been disabled for over 3 years. It was caused by a traumatic injury to my jaw and neck during a simple procedure, and I had no idea my life would change that day. 2 years and 2 months after symptom/illness onset I have finally gotten some possible answers. Cervico Medullary Syndrome i.e. brainstem compression causing neurological symptoms, nervous system dysfunction, gastro issues, and pain, most likely brought on by craniocervical instability of my neck/skull junction. The pictures below are from the assessment my neurosurgeon Dr Paolo Bolognese sent me after our consultation with my diagnoses and tests he would like me to have done:

Here are some of the things I experience with cervical medullary syndrome below:

The next thing the neurosurgeon suggested is fly to New York and see my him in person and have a procedure called Invasive Cervical Traction. If my symptoms improve during invasive traction, I will be a candidate for cranio-cervical fusion. This is where the neurosurgeon will fuse my skull to from c-0 to c-2 with metal plates and screws to keep my neck in the proper place and keep the brain stem uncompressed and help hold my head up for me since my neck/collagen is too damaged to do this on it own. This would be scheduled a few months later so it will mean a SECOND, longer trip/stay in New York if surgery happens. Dr Bolognese said my quality of life was 50% compared to a healthy, able bodied persons based on the Karnofsky Scale, often given to cancer patients. Here is a video from Dr Bolognese as well describing Craniocervical Instability:

There is also another less invasive option for treatment at Regenexx Stem Cell clinic Dr Bolognese mentioned in Colorado for craniocervical instability. This is 12k for one treatment all paid UP FRONT. It is NOT covered by insurance in any way. There are no payment plans that I am aware of after consulting with them but they did say i am a candidate for the procedure. This would be my first option to try before surgery if we could afford it. We have exhausted all other conservative measures and it is a rare issue with rare solutions. The recovery time is much shorter and there are much fewer complications. There is no guarantee to any of these things "curing me." Its all just a gamble at improving my quality of life currently.

Flight costs from Missouri to New York or Colorado for my partner Josh and I will be hundreds, plus money while we are there and lodging. And any down payments for my ICT procedure and other tests (or stem cells if we can afford to try that first.) If fusion comes after or I worsen quickly to the point I need it asap, we will cross that bridge when we come to it, but any money made here will go towards that as well if any is left over. 

I have already taken out loans to cover the medical debt I've amassed in just two years going through a ton of diagnostic testing and doctors just to get to this point. I am stuck working full time at home because my job denied me disability insurance due to pre-existing conditions and am worsening. It hurts to even sit up all day with the weight on my neck and brainstem without support. I cannot lose my income or health insurance or home and just stop working, so when the time comes to have these tests or procedures done there will be many unknowns. I will most likely be on unpaid fmla leave. I also have current medical bills incoming from recent visits and diagnostic tests because I have comorbities caused by the brainstem compression and see other specialists. Here is a recent bill final notice I am needing help paying off:

Dr Bolognese, my neurosurgeon, took me two years to find because he is the best, but one of 3 in the U.S. who even helps people with my condition. I have researched endlessly online reading medical journals, finding support groups with other people with craniocervical instability, been gaslit by the medical system, facing ableism and cost barriers, seen over 35 doctors, and fighting to survive. It is a condition most have not even heard of. 

I want my life back. I want my vision back. I want my mind back. I want to not be stuck in this state of physical terror 24/7. I want to feel like myself again. I am 27 battling brainstem compression and fighting everyday for the hope this is possible. I have seen Dr Bolognese make this possible for other people as well as the doctors at Regenexx. We finally got answers, now money is the only obstacle. So please, keep fighting with me to get me there! ❤

(Here is a video below if you'd like to know more! I have a YouTube channel chronicling my medical journey)