I’m hoping I’m posting on here correctly!. I had a DAVF diagnosed last year after escalating symptoms which had started with pulsatile tinnitus 18months previously. After angiogram last year we decided to watch and wait (type 2a Cognard) but after vision issues, dizziness, head pain etc I have opted for embolisation surgery which issue to take place next week. I’m quite nervous but hopeful… I’ve been advised that there will be a fortnight recovering off work although I wonder about this. It does sound like a minor procedure given this advice but I’m wondering given this involves the brain?! Time will tell I guess and I will be pleased to get back as asap.
If anyone has any advice I’d be most appreciative . The surgery is due to take place in Brighton, UK.
While the concept of embolization is very simple, I think it has a bigger impact on you than you’d think, so I think you’ll need your fortnight off. I’d say the key is to be patient with yourself and don’t be perturbed if it takes longer than you think to feel back to normal.
I had a DAVF in my right transverse sinus back in 2016 and had an embolization – just one – at Queen’s Medical Centre, Nottingham, in April 2017. I started with a pulsatile tinnitus and grew considerably dizzier over time, with an increasing noise from the same disrupting my sleep.
I was as nervous as heck. I’m not good with blood, I’d had two small surgical procedures before but neurosurgery?! No. That’s a bit scary isn’t it?
So my experience of going through the same as you is that actually, I got through it fine. I think my fear of the unknown was the biggest hamper and the reality of getting through it was fine. Doc told me that we might need two approaches to it but immediately afterwards (the following day) he told me that he thought he’d got it in just the one sitting.
Ask anything you like about the process. I’m very happy to share. I don’t think there’s anything that I’m going to put you off about. It’s not altogether easy but it’s perfectly gettable throughable. If I can do it, so can you. The nurses will lead you through the day and once you’re back in recovery, they take up the reins again and look after you through a night in neuro ICU and probably a further night on the ward.
The best advice is to try not to worry. I had two embolization prior to my craniotomy and everything was fine including the craniotomy. Neurosurgeons are the best of the best
I just wanted to say I hope your embolization goes well next week. It’s completely normal to feel nervous before a procedure like that, especially when it involves the brain.
I had brain surgeries, and I remember feeling really scared before them too. But the doctors and nurses do this kind of work all the time, and they’re very experienced. Try to rest and stay positive as much as you can.
I’ll be thinking of you and hoping everything goes smoothly and that your recovery is quick. Wishing you the best of luck next week!
Thanks for all the messages and support! It’s been a slight rollercoaster of a journey tbh. Op went initially well, 38 coils inserted, spent 2 nights in hosp and was discharged Fri afternoon. Unfortunately overnight I developed severe head pain, vertigo and sickness so was ambulanced back in - but to a&e. No beds available despite being admitted so stayed on trolley for over 60 hours in corridor. A CT scan fortunately confirmed no further bleeding. Finally got bed on neuro ward and they have medicated the pain and vertigo and I await an mri tomo. So it was going smoothly….until it wasn’t! I’m on the up though! X
Yes, having to go through that much readmission doesn’t sound good at all!
I’m very glad to hear from you and good to know it has gone ok. I don’t think it’s possible to guess at the effects that our operations will have on us as the breadth of things that we can realise is so wide. However, it is very early days and almost anything could be swollen or upset by the invasion that you’ve had, so it could all be very temporary. However. You’re doing the right thing by going and getting checked out.
Keep us in the loop. We can cheer you from the sidelines and it is always good to learn from others.