Hi there and thank you for accepting me into the group.
Well to give you a bit of back ground with my situation. I woke 20 June 2019 with a severe headache which I put down to hay-fever, I took paracetamol, brufen, and a hay-fever tablet and continued with my day. It was just before tea time and the headache was much worse, I began vomiting and my husband put me to bed. Around 11.30pm I woke and wandered into my daughters bedroom opened her chest of drawers and vomited again. Husband didn’t know what was happening and put me back to bed. I woke again at 1.30am and was sick and collapsed on bedroom floor. My husband thought stroke and managed to get me to respond to FAST which I passed so he put me back to bed.
21 June 2019 I did not wake up an ambulance was called and I was taken straight to hospital. I was scanned and consultant confirmed I had suffered CVST stroke and he had never seen anything so big in 8 years. I was transferred to specialist hospital and my husband was introduced to neuro surgeons as they were not sure if surgery would be required. I also suffered extensive cerebral oedema.
My body accepted the medication and I was discharged on warfarin for life. There is no medical reason as to why I suffered such an extensive CVST.
At home I developed a excessive thirst were I was consuming on average 10 litres of fluid a day chomping on ice and knew that something was not right. At a follow up appointment my neurologist referred me to see endocrinologist who performed a water deprivation test. The test made me ill so they stopped on advice from consultant and I was made to feel like it was in my head. Anyway a couple of days later the hourly blood and urine results were back and it appeared they showed abnormalities which meant I was diagnosed with partial diabetes insipidus. I have been told this is a result of the pressure on the brain as well as my vision issues.
In December 2019 I began to hear a very loud pulsing noise in my left ear. I rang GP who seen me immediately and after checking my heart and confirming my blood pressure was slightly raised determined I was anxious and prescribed diazepam which I took but would still not sleep at night due to the sound and the thirst.
I mentioned the noise to neurologist who informed me they need to sort out the excessive drinking before they investigated whooshing noise. To cut a long story short I eventually started desmopressin and the thirst became managed on medication.
In June 2020 I had a CT aniogram which showed a small fistula. Neurologist states it was not big enough to rush me into hospital straight away and he would be discussing the findings of scans with neuro surgeons and interventional radiologists. I received a letter 25 June 2020 which told me after reviewing the scans I would need a DSA to diagnose and then after a telephone call with neurologist he explained because I was on warfarin they would enter artery through the wrist. They would then take a look and decide on best course of action. I would then need to go back and have same procedure when they were to fix it.
Since end of June the pulsatile tinnitus has stopped. It is still present on some occasions but not as loud as it was at the beginning. I have gone so tired and experience pain above my left eye and a fullness still in left ear. My teeth have started to chatter but randomly and for no apparent reason. I sometimes find myself wobbling on my feet and have fell and twisted ankles. My legs feel so weak and I feel like I have gone ten steps backwards and back were I was after being discharged from hospital.
I am still waiting for a call from NIR to discuss procedure and book me in but nothing so far. I have rang and spoke to stroke secretaries about the change in symptoms after discussing this online with an American Neuro surgeon who explained the fistula could close by itself or it could herald a sinister change in the venous drainage.
I am finding it all so draining not knowing and feeling like my life is on hold. I am sick of waiting now to be honest. I am scared and just want to move forward but because of virus everything seems to be delayed.
Another thing is I have now noticed that even a little walk will result in my entire head pulsing throbbing. I know my head is not right my eyes keep flashing and some days my vision is worse.
I have bitemporal hemianopia and currently awaiting a further test with ophthalmologist, therefore driving at the minute is out of the question. Wondering of anyone had experienced anything like this and still managed to keep their driving license.
Anyway apologies for the long post and not sure if I have done this right.
Thank you for reading and for any advice going forward.
)when I talk to her in the am I’ll get the name.