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It has been quite a while since my last post (100 days to be exact).I apologize for that, but I think I was waiting for something good to happen to report back to you. Many times I said I wasn’t ready to talk about what had happened to me, but I think it’s about time I shared my story to the world. My family has continuously searched for cases similar to mine. But they couldn’t find anything, because what has happened to me is something very rare and there isn’t much data.
I never explained what exactly happened to me. That is because, even I didn’t know much of what was going on with me. My family tried to spare me from bad news. This post will be a bit long (it will have several parts) and a little bit technical, so please bare with me.
Basically, I had a cerebral venous sinus thrombosis which turned into an ischemic stroke. A cerebral venous sinus thrombosis is the presence of blood clots in the dural venous sinuses. As a result, part of the brain stopped receiving oxygen which led to brain death.
You are probably wondering what was the cause of this dreadful experience?
It all started at the beginning of November, 2013. Someone I cared for deeply hurt me in a way that was very shocking to me. He betrayed my trust in such a way that really destroyed me psychologically. I was living in Ireland, at that moment. In a mere second I found myself completely and utterly lonely in a faraway country, far, far away from my family. So, I cried and cried, the kind of cry that makes you fall apart. I wanted to come back home that very day, but unfortunately, I didn’t have that much money. You know what it’s like at the beginning of the month…you are always short on money. The next day I started feeling nauseous and began to throw up. Four days later, I started seeing double and a grey spot appeared in my right eye. No matter how much I tried, I wasn’t able to regain the focus in my right eye and the spot didn’t disappear. For the next couple of days I continued to vomit twice a day, and it was getting worse. I could barely eat anything, because the minute I did I would immediately throw up; also, I slept very little, about 3-4 hours per day. But the worst were the headaches. They weren’t normal headaches. It felt like when you stay upside down and all the blood rushes to your brain and then you suddenly stand up, but the blood doesn’t flow back, it just stays there, pressing the brain. I was so scared, but I felt reluctant to ask for my family’s help, because they were also tight on money and I didn’t want to burden them.
You are probably wondering why I didn’t go to a hospital right away. Money. Unfortunately, in Ireland you have to pay for health insurance. I thought I didn’t need it, because I thought I was young…what could possibly happen to me? I was going to pay for one when I would increase my income. I heard that people without health insurance would have to pay around 1000 Euro per day. There was no way I had that kind of money. I didn’t have much contact with the locals,except for the person I was having a relationship with. He didn’t give me the support I needed, neither emotionally, nor financially. He was in between jobs. I asked him if he could borrow some money from the people he knew, so that I could come home and see a doctor, but the help came to late.
I thought that it would go away,never for a moment did I suspect that there was something wrong with my brain… Ignorance… But it was becoming clearer and clearer that it wasn’t going away. So, a week later I finally asked my family for help and they bought a ticket for the 16th of November.
On the 18th of November we went to the doctor of general medicine. He was very concerned about the spot in my right eye, so he advised us to visit an ophthalmologist and a neurologist as soon as possible. The next day, according to the appointment, I went to the ophthalmologist. The doctor was even more worried so she urged me to go to the hospital, in my home town Braila, for more tests. However, the doctor didn’t give me much information as to what was happening to me. She didn’t explain anything, and in ten minutes I was out of the door. So, later that day we went to the hospital at the emergency unit. The internist that I was assigned to laughed when I told him the symptoms I was experiencing. The ophthalmologist on duty that day checked my eyes, and she thought I might have an infection.
So, I had to take several tests to discover if I had an infection. They all thought that, because I came from a foreign country, I must have caught an exotic virus. At that moment, the movements of my right eye weren’t in sync with the movements of my left eye. And they still thought it was an infection.
The next day, I had to give another set of blood samples. Although I had taken blood samples the previous day, and there was nothing out of the ordinary with the blood flow, the next day, when they took my blood they couldn’t. My blood was so thick that it instantly clotted inside the needle. The hole process made me feel nauseous again, I almost fainted and then I started throwing up a green liquid. They immediately put me on IV.Even after describing them all the symptoms, they still didn’t take into account that I might have something similar to a stroke. I had a CT but they found nothing .I was in the ophthalmology department for 4 days but they couldn’t discover what was happening to me.
I was moved to the neurological section. The blood tests continued, including lumbar puncture and an MRI. The MRI didn’t show anything suspicious. Now that I look back, I think it must have been a very small clot for them to miss it, because the blood clot that blinded my right eye was most definitely there from the beginning. The neurologist worked together with two ophthalmologists. Both of them still claimed that it was an infection. But the results from the blood samples didn’t show any signs of infections in the blood, and everything else was within normal range. I have to mention that I wasn’t feverish at all at any time. The questions on everyone’s mind were: What was causing my blood to thicken so quickly? and Why was there a swelling on my right eye, because that is what they discovered inside my right eye? This swelling is called papilledema.
The neurologist had a different opinion: she thought that I had Pseudotumor Cerebri. This means that the pressure inside your skull is very high. And my intracranial pressure was extremely high and I was at risk of losing sight my left eye as well. But, the ophthalmologists continued to claim that it was an infection caused by an exotic virus and I needed to see a specialist in exotic viruses, in the capital . The neurologist advised us to seek the help of a neurosurgeon.
Throughout my hospitalization I was given some basic IVs, but none included treatment for my thick blood, which continued to thicken. They were so set on the exotic virus being the most probable cause that they completely disregarded everything else. When I was discharged from the hospital I was in the same condition as I had checked in, it didn’t worsen, but it didn’t improve either. I still had double vision, terrible headaches, nausea, and I still threw up from time to time.
This is the beginning of how I became unable to see and hear. If you have knowledge of similar experiences, please don’t hesitate to comment. I would really like to know how others cope with strokes.