I just wanted to give an update on my story. Part 1 here.
I’m still waiting for my embolisation. Back in late November / early December I was told I should expect embolisation in “March / April”. Each week that goes by, I’m feeling very gradually more poorly. I’m not sure I’m as poorly as a lot of people here but I’m feeling a bit more grey about it as time goes by. I do have good weeks but the last two have been more difficult.
I’ve got a Dural AVM or AVF in my right occipital, with possible thrombus in my right transverse sinus. It is giving me ever louder pulsatile tinnitus and despite cutting out stimulants such as coffee, chocolate, alcohol, I’m regressing to beyond the point I was in November. Initially cutting out the stimulants worked and felt like a miracle cure but slowly, steadily I’m regressing, indeed I’m sure I’m more poorly now than ever. Sleeping is difficult due mostly to the dizziness / pressure. I’m propping myself up with min. 3 pillows to try to reduce pressure (but who can sleep like that?!)
The combination of AVM and possible thrombus is giving me “reflux” in my head, increased pressure back-inflating the veins that would normally drain towards the heart through my transverse sinus (I assume). It makes me feel pressured and a bit “dizzy”. Not likely to fall over but disconcertingly “wrong” somehow.
I’ve called the hospital about three times over the last 6 weeks or so, as my symptoms have changed, to validate whether they are worried by my regression at all and so far “no”. Indeed, I called on Tuesday and my current estimate for being seen has gone back a week rather than forwards. Definitely April rather than March. I know the NHS has had perhaps the worst / most challenging winter for a long time, so to be expected I suppose. I hope by the time I get to the front of the queue, embolization is still the right treatment to sort me out.
On Monday, I had 5 seconds of extreme pressure / dizziness, beyond anything I’ve ever had before. I was convinced the darkness was going to fall but no, the darkness somehow stayed away. Advice from hospital was if I have a sustained significant event, to go straight to A&E / ER. But re my brief extreme dizziness, if I should start to have several such events to go to my local doctor for assessment & referral. Personally, I think three sets of extreme dizziness will be enough to send me to the doc!
So, I’m sure I’m not the worst affected person here: there are some proper heroes in our community: but I’m having a more challenging time than I had been and thought to share life waiting for the NHS.
Any thoughts, advice, encouragement from others very welcome: we all need to lean upon each other from time to time.
Lots of love,