As a mother there are a number of dates that I will remember for the rest of my life , the dates and times my children were born and the day I met my partner, now I have another date to add to that list , this one is morbid and terrifying ,Saturday April 23rd 2022.
I attended what was supposed to be a routine eye appointment, I wanted to postpone it as my daughter wanted to go shopping and spend her birthday money , I mentioned this to my mother and she said “No Natalie you need a eye test , your eyesight is getting worse and you’re having headaches daily, you need new glasses which you will only get from a eye test, I will take you both shopping tomorrow” Knowing that my mother was right I agreed and went to my eye appointment. The ophthalmologist asked if my eye sight was significantly worse , if I was having headaches , dizziness or tinnitus to which I answered yes to all , she then proceeded to carry out the exam as usual at the end she informed me that my optic nerves appeared swollen and she has made me a urgent referral to see a ophthalmologist at a local hospital for more in depth testing , she assured me it was probably nothing she was just be cautious.
The day of my hospital appointment came a couple of weeks later and I had so many tests , including a ultrasound on both of my eyes a MRI scanand pictures taken , three hours later I went home and awaited a phone call as the ophthalmologist needed to discuss the results with a colleague, I wasn’t worried as my eyesight has always been
unique and either baffled or fascinated opticians that I saw. The following morning I had a phone call and I was told I need to return to hospital ASAP because my MRI scan showed I have a series of clots on my brain which is extremely rare and is called Cerebral Venious Sinus Thrombosis (CVST) My heart sank, my blood ran cold , I was terrified and I’m not ashamed to admit it but I cried , I didn’t cry infront of my mother, children or partner because I didn’t want to worry them or for them to see how scared I was.
After a two day stay at hospital I returned home with new medications and referrals to haematology, neurology and opthalmology. For three days I had to inject blood thinners into my stomach twice a day until my oral anticoagulants kicked in.
In the 5 months since then I have been back to the hospital 10 times and have had a handful of telephone consultations. In July I was also diagnosed with intercranial hypertension (high pressure in my brain). Earlier this month I had a lumbar puncture to test my cerebal spinal fluid and I am awaiting the results. The first few months were tricky as I noticed I would slur or stutter when I talk , struggle with hand eye coordination and my attention span was short.
The initial cause of my clots was thought to be a combination of being on the contraceptive pill, having covid , having the covid vaccine and my weight. I will be having blood tests done soon to see if I have a blood disorder.
In August my symptoms had gone , I still got headaches but not daily I received the amazing news that my clots were gone , unfortunately since the end of September my symptoms have started to return and I worry that another clot has arose.
My parents partner and friends have been an amazing support to me and continue to be , I couldn’t do this without them. I always have someone to talk to if I need reassurance or am feeling anxious. I am so lucky to have an amazing supportive network around me. I can not fault the NHS at all , the care I’ve recieved has been faultless and swift. I am so grateful that my mum convinced me to go to my eye appointment and the ophthalmologist was thorough. I have joined a CVST support group on Facebook where I can talk to others that are experiencing what I am which is a great help to me.
My advice to those that are reading this is if you’re on the contraceptive pill then make sure that you have routine appointments, if you have persistent headaches talk to your GP and if they prescribe you medication foe them and it doesn’t help keep going back until something does help, attend eye appointments and listen to your mothers.
Having CVST has changed me both physically and mentally, I have lost 11kg and counting, I try not to stress about things I can not change like I used to, I’ve always been thankful for my parents but now I’m even more thankful ,
they’ve been amazing. And I take the small wins when I get them. Its been a long road and it’s not over yet but with the help of those around me I can see the light at the end of the tunnel.
