I’m really glad you found this community, and I hope you’ll find some support here and get answers to your questions.
Right now, I think it’s really important to listen to your body. I would recommend going for walks and getting some fresh air. Other than that, you can gradually return to your normal life after embolization. Just be a little more careful when it comes to exercise.
I tried running almost immediately. I think I just wanted to feel like I had some control over the situation, haha — as if that was even possible. And I realized that my body wasn’t as resilient as it used to be. I would get tired much more quickly. It frustrated me at first because I felt like I had somehow lost my youth and suddenly gotten old.
But after some time, my energy started coming back. I think it’s different for everyone. For me, it took almost two years for my energy to fully return. I think it happened once I had emotionally processed everything.
At first, I went back to the gym, but I realized that the workouts were really hard for me, so I decided to reduce the intensity and started dancing.
Try to keep an eye on your blood pressure. Don’t lift heavy things, and be careful with strength training. Try not to stress too much.
After my embolization, whenever I got nervous or stressed, I would immediately get a headache.
Also, try to keep a regular sleep schedule. And avoid alcohol, because it can affect your blood vessels.
Just take good care of yourself and give your body time to recover. I hope you have a smooth and speedy recovery!
I can’t see a pharmacy being the right place. Was it one of the neurosurgery nurses who told you to go? If anything, go back to neurosurgery. Otherwise, I’d start with the GP. I’m feeling somewhere between neurosurgery and ENT is where you need to be, not a pharmacy.
Normal. Perfectly normal. Its a bit like a stage of denial. It’s part of processing what has happened. Talk to your counsellor person about it but it’s completely understandable and many of us have gone through the same.
I am convinced that you will get through all of this perfectly well: it is very early and there’s a ton of patience and persistence to be done before you get out the other side.
@Nana thank you for this! I’m incredibly grateful for finding this community, it’s definitely been a huge step forward for me mentally having everyone’s support here.
I completely understand the element of control there and I think that’s part of the struggle as I have zero control and I feel that I’m walking on egg shells in my own body, not knowing if I’m going to be ok or collapse on the spot. I’m hoping time will help ease that anxiety.
I am also struggling with not being able to drive, I’ve contacted the DVLA, but haven’t heard back but it all feels uncertain and not clear if I’m able or not able to drive right now. So trying to figure that out and chase them up too.
I’m 3 weeks today of no alcohol and I intend to keep it that way. I think I’ve scared myself off of alcohol as I originally thought my brain bleed was a hangover! And id drank quite a lot over the few months prior to my hospital admission so I’m staying clear of alcohol for the foreseeable!
We’ve also just sold our house, and are now searching for our new house and about to enter the whole moving process so that will be fun trying to keep my stress levels down throughout that!
Thanks again for the response. I think the main issue for me is not understanding what’s ok and what is, I’m very particular so I need that black and white do’s and dont’s list, which no one is able to provide because there is no black and white to this recovery process!
@DickD i did think this, but she didn’t seem concerned. This is my brain injury team nurse whose contact details I was given when I left hospital. She told me to “get my ears checked” she didn’t really specify who with. She did say that if it persists then she will refer me back to the radiologist, but she also said it’s quite early days and to see how I go with it.
But she said to make sure they’re not blocked or there’s no infection, maybe I’ll contact the gp instead.
I get you I spent a long time trying to find my sense of calm again. I used to think I had everything under control, but the truth is, there has always been so much uncertainty ahead of us. Nothing has really changed, even before, we never knew what could happen to us from one minute to the next. But we always chose to believe in the best, and I hope that thought brings you at least a little comfort.
I also forgot to mention that I wasn’t allowed to drive for a while either. In my case, it was because some of the medications I was taking could cause drowsiness as a side effect. It doesn’t happen to everyone, but I think it’s better to follow that advice and avoid driving for a while, just to be on the safe side.
And after the embolization, or maybe because of the seizure itself, I’m not really sure, my memory and concentration weren’t quite the same for a while, so I felt it was safer not to drive anyway.
As for alcohol and smoking, I would personally avoid both completely. They can affect blood pressure and put additional stress on the blood vessels, and alcohol can also increase the risk of seizures.
And I would also avoid long-haul flights at first. The air pressure is lower at high altitudes, and while I was still recovering, I just didn’t want to put any unnecessary stress on my blood vessels.
And one more thing, I would pay attention to any sudden, unusual or unusually severe headache. Don’t wait for it to go away on its own, especially if it feels different from what you normally experience. Go to the hospital right away and get checked. It’s always better to make sure everything is okay than to wait and hope it passes.
Regarding driving, there is guidance for medical professionals (but useful for us to read) published by DVLA. In essence, for a DAVF which has bled, you need to stop driving for the moment and report the medical condition to DVLA.
The guidance is here:
The guidance about DAVFs is on page 53.
I stopped driving voluntarily pre op. Once I had my op, my interventional radiologist told me I must not drive and that I had to report it to DVLA. DVLA then used the info I submitted to write to the consultant and to my GP and by the time that came through for them to reply to, they were comfortable that I could drive, so I never had my licence revoked but note that I hadn’t had a bleed.
Be positive.
You need to report it to DVLA but they were remarkably helpful to me on the phone. I was pleasantly surprised. N.B. also my experience was 9 years ago.
I had a DAVF embolization surgery in March 2020 for a type 2 b. No active bleed- urgent but not an emergency. I had meningitis in 2018 and apparently had a sinus thromboses that let to the DAVF. It caused pulsating tinnitus and some balance issues. It took a while to get the diagnoses. My surgery was during pandemic. Doctor had to get special permission from hospital board to do the surgery. I had the surgery on a Thursday (5 hours) , stayed in ICU for a day and then home. I went back to work remotely the following Monday. Had some brain fog but worked through it. I get an MRI angio every year to see how things aredoing. The embolization is holding but I do have a small aneurysm now that is being watched. I control my blood pressure and that is it. I feel very blessed to be alive and functioning. I had hearing issues after the meningitis. They have resolved some. They did increase for a bit after the embolization. I felt I had cotton in my head and trouble hearing. That resolved in a couple of months. I did go to PT for balance issues and it was helpful.
Hi Sophia, I know you’re in the UK but there is a support group in the US called TAAF. “The Anneuyrism and Avm Foundation”. You can look up their links online. Dina Chon is the executive director and she can connect you to support in Europe. I believe they do regular Zoom support groups.
There is an international support group for TaaF which I am a part of. If you want to direct message me and are interested in joint I would be happy to make that connection.
I found my AVM after suffering a brain haemorrhage/stroke about two years ago. I’ve since had two craniotomies, with the most recent one just a month ago.
All the things you’re currently experiencing, whilst unpleasant, are completely normal from my experience. For me, once I got through the physical side of recovery, accepting that I was sick, getting it treated and getting on top of it, the hardest part was actually the mental recovery. That was especially true the first time around.
It hasn’t been as profound the second time because I know what I’m dealing with. Things like getting a sore neck, feeling dizzy or having a strange sensation somewhere, which I was previously convinced meant something terrible was happening, I now know are often just part of the recovery process.
Two weeks post-surgery is still super, super fresh. I really don’t think you should be putting any pressure on yourself to be back to normal yet. These things take time, and you need to give yourself that time. You’ve got the rest of your life ahead of you.
I’m more than happy to connect if it would be helpful. I’m based in London, so I know my way around a health system that’s fairly similar to yours.
Good luck. You’ve found a good place here and I wish you all the best with your recovery.
Thank you to all of those who have responded and shared their stories, it really has helped and made me feel less alone.
So this Friday will be 3 weeks post embolisation which I feel has gone fast but also only feels like yesterday. The mental battle still continues to be the biggest obstacle, and not being able to drive has taken away a lot of my independence.
I spoke to the specialist nurse yesterday and asked for a meeting/someone to contact me regarding what actually happened to me/outcome of the treatment because I feel a bit overwhelmed and in the dark. But maybe that’s an element of me processing it all, I’m not sure.
@Spadian you’re also quite fresh with the post bleed/ops. Hope you’re doing ok. As horrible as it is, I’m selfishly happy to find I’m not the only one that finds the mental side of things that bit harder.
Has anyone found that specific things make their headaches worse? I’m wondering if too much caffeine is worsening my headaches, or watching tv. I’ve not had alcohol since I went into hospital (will be 4 weeks on Sunday!) and I’ve been having around 1-2 cups of coffee per day.
I found that the last week or so I’ve not relied so much on pain killers, but today my headaches been very persistent and behind my eyes a lot. This may just be part and parcel of recovery. I’ve also found that my neck/shoulders are really tight, so hoping to do some yoga to help ease this.
I quit caffeine in the waiting period for my op and I stayed off. You could see how you go without. You will probably have some withdrawal from it to get through as well. It’s not altogether easy.
Honestly, I think being off caffeine is a good idea overall. It’s not good for anyone, really.
Screens are also not good for us: some people with brain injuries definitely struggle with screens.
How to stop yourself going crazy while you get better? That’s the challenge!
I found that if I was dehydrated or forgot to take my blood pressure medicine that the noise in my head (pulsating tinnitus or buzzing) and headaches would be much worst.
Therapy is going well, I’m working through this and the post op struggles. I still have around 4 weeks off work, which is the biggest struggle now as I feel like everyone is getting on with life and I’ve been left behind.
I’m struggling with keeping busy when I still have some physical limitations where I can’t drive/go gym etc, so lots of walking for me. I’m trying to find a hobby, but I’m struggling when most things that I concentrate on trigger a headache.
I am really trying to focus on moving forward, and when I compare how I feel now to 4 weeks ago, I have come a long way, so I’m grateful for that.
Still no alcohol which is good, however I’ve found I’m substituting my alcohol intake with sugar intake which is worse as you can of course have sugar anytime, where as I wouldn’t drink until the weekends, and even then until the evenings! This is then affecting my sleep, and stress levels I feel. My garmin isn’t impressed with my stress/sleep stats I am working on this through therapy too.
Hope everyone has a lovely weekend, thank you again for the ongoing support
I hope you have a smooth and speedy recovery!
I spent a long time trying to find my sense of calm again. I used to think I had everything under control, but the truth is, there has always been so much uncertainty ahead of us. 
Nothing has really changed, even before, we never knew what could happen to us from one minute to the next. But we always chose to believe in the best, and I hope that thought brings you at least a little comfort.
which is worse as you can of course have sugar anytime, where as I wouldn’t drink until the weekends, and even then until the evenings! This is then affecting my sleep, and stress levels I feel. My garmin isn’t impressed with my stress/sleep stats 
I am working on this through therapy too.