Who am I?
Hi, I’m Maria from Venezuela. I’m 24 years old and I got diagnosed with Craniocervical and Atlantoaxial Instability last year. I studied Law at the University in Venezuela, but I couldn’t finish my studies because my disability got very serious. Instead I dedicated myself to working from home teaching classes, while I studied Graphic Design. I also volunteered at a hospital where I gave classes to children and I taught English.
How I got diagnosed
Last year, 2021, I got diagnosed with Craniocervical and Atlantoaxial Instability, Intracranial Hypertension, Chiari Malformation, Tethered Cord and Cervicomedullary Syndrome by a neurosurgeon. I’m suffering from Ehlers Danlos Syndrome, which is causing these problems.
Obtaining a diagnose has not been easy. So far I have been seen by 9 neurosurgeons total both from my country and abroad (online). They have done thousands of tests, and I had to be a pioneer in carrying out special protocols to achieve these diagnoses in my country that are extremely unknown. I’ve been dealing with medical gaslighting for years because doctors said everything was just in my head. The horrible comments from doctors almost made me give up, but I didn’t allow it to happen. It all was happening parallel to the fact that I was (and am still) trying to survive with my condition, along with many other problems, being very sick and bedbound without getting treated.
It hurts a lot. The gaslighting is so much that it has caused me depression, anxiety and post-traumatic stress. I didn’t want to talk to anyone anymore and I didn’t want to go to another doctor, because I already knew what they were going to say. I even wanted to simply die because I believed there was no way out of all these problems.
I had to go to multiple doctors traveling all around my country, and after I ran out of options here, I asked for 2nd and 3rd opinions but there I didn’t get any answers either. I had to self advocate for getting several appointments with specialists from other countries where I got dynamic studies done. This finally gave me some very important answers and diagnosis. These doctors were really dedicated and took the time I needed because my case is pretty complicated. They recommended me to do fusion as I’m too unstable.
Now I can connect the dots, at least that one step has to be taken. My case is already very severe and there is too much damage, but the question is how to get the surgery as I don’t have the money to do it and I can’t work because of all these symptoms. I have already achieved a part of my diagnosis thanks to help, donations and campaigns, but above all, with a lot of dedication as I don’t want to give up.
It’s very unfair everything took so much time because of the lack of financial resources, lack of availability of imaging and CCI specialists. I wish it would be different, because raising funds in a situation like this is too difficult for me. Especially when I have no motivation or energy, or my hopes are extinguished every time I try and I simply do not succeed because it doesn’t depend on my will but on resources.
My case is very complex. All the systems in my body are compromised and my head literally hangs by a thread that can break at any moment, which is why I’m wearing my neck collar all the time.
How my CCI started
My story with CCI has been a journey of setbacks and victories. It all started since I had full anesthetics with intubation.
I’ve been having symptoms since I was a child, but I didn’t realize it until now. Symptoms ranged from chronic headaches, heavy head, pressure at the base of the skull, persisting migraines, pressure, throbbing, numbness, dysautonomia, fatigue, dizziness, hypotension, tachycardia, fainting, intolerance to temperature changes. Symptoms get worse when standing or sitting, moving around, coughing or sneezing, crying or laughing. I’ve also always had muscular problems, tremors, loss of strength, cramps, tinnitus or “ringing in the ears”, problems with balance, walking, eating, moving in general, problems with organs, visual problems, urinary, gastrointestinal, respiratory problems, many other neurological symptoms such as seizures and sometimes paralysis. All symptoms gradually got worse over time. I’ve had other complications as well such as osteoporosis, low weight, nutritional deficiencies, MCAS and problems on a cardiovascular level from dysautonomia.
My symptoms are severe and life-threatening so I need to get treated. I have pain all the time, medication doesn’t help and it even weakens things instead. My instability affects my entire nervous system which creates a domino effect. I get paresthesias, weakness, hypotonia, arrhythmias leading to fibrillations, tachycardia and bradycardia, extreme hypo- and hypertension, heart and kidney failure, urinary problems, extreme fluid retention, ascites, anasarcas, fainting, seizures, hypoxia and respiratory arrest. Other symptoms are distortion of sensation and proprioception, dizziness, swallowing difficulties, hemiparesis, nystagmus, tremors, loss of strength throughout the body, inability to walk, abnormal reflexes, denervation of organs and multisystem failure, ischemia, CVD, brain injuries due to faints and hypoxemia and the list goes on.
Treatment for my CCI
I’ve tried literally everything, medication, physical therapy and even experimental and alternative treatments and more but nothing has worked so far. I’m currently oxygen dependent and I need to wear a neck collar 24/7, which is the only thing that gives some relief.
My life now
Currently I can’t no longer work. I decided to teach remotely but after the pandemic symptoms increased a lot and I’m in pain 24/7. The only thing that I‘m able to do is lying in bed and stay with my phone or listening music. It’s mentally very hard as I see everyone else having a life and having fun. I loved cooking, playing piano, painting, but I can’t do it anymore. I lost my friends, which hurts me a lot. It’s so hard to realize you lost your opportunities, your job, goals in life, hobbies… The only thing that helps me getting through it is having a pet that keeps me company.
But I’ll keep on fighting for my life, I don’t want to live like this anymore. I’m so glad I have more answers but I still have a way to go. It’s so important doctors will get aware of this condition, so eventually more research can be done and treatment methods will be developed, and surgeries will be covered by our insurances.