Hi all, the bold eagle has landed! I am very sorry for the delay in updating you all on my embolisation experience. I was intially working on writing a very indepth account of my experiences however I have decided to cover the main bits here. I will then post my blog on here with a lot more detail once it is ready - it has been started and I am working on it almost every day between naps.
I found out on the day of the surgery that I the information I had been given about my AVM was a misunderstanding of the angiogram scans. What I initially believed was I had a 4cm left occipital lobe AVM which was eloquent and relatively high flow and that brain tissue around the AVM all looked healthy so there was a chance the sight I had already lost might return - I wasnt too fussed about that but it would be nice. I was advised that I would be having several embolisations, reducing my AVM in size by no more than 30% each time to keep risk low, and that any remaining would be removed by gamma knife. Any sight loss post operatively would most likely be due to swelling and temporary.
My neuro-radiologist was shocked I hadnt been given a meeting weeks in advance of my surgery to be informed. He informed me that I had an extremely rare and aggressive AVM, that I was already getting preminent brain tissue damage and that the vessels surrounding my AVM looked very unstable. Essentially that I was an incredibly high major rupture risk. He said it was critical that he reduce the AVM be as much as possible all in one procedure. He also said that any sight loss would most likely be perminent with very little sight possibly returned due to swelling going down. He gave me a 1% risk of death, 5-8% risk of total right vision loss in both eyes, deficits in communication, right side paralysis and potentially other major deficits. He made it clear it was my decision if I needed more time to reschedule but it was clear it was urgent. I had 10 minutes to sign or not sign the consent form.
Considering what I had just been told and also what I knew inside of me, seeing myself deteriorating over time and how it played on my mental health and will to live. I went through with it.
My parents were told it would be a maximum of 2-3 hours in surgery. It took 7.5 hours. My amazing superhero of a neuro-radiologist sucessfully reduced my AVM from 4cm to roughly 0.4cm! I spent 12 days and 11 nights at the hospital.
I unfortunately suffered a controlled stroke during my operation which has left me almost completely blind on my right hand side in both eyes due to the brain damage already confirmed on the MRI. They do hope a little will return as swelling goes down but most is perminent. I have luckily kept just enough central right vision in both eyes to see full faces, read and have depth and motion perception. I will never be able to drive. As a result of my vision loss I experience hallucination images in my blind side called “charles bonnet syndrome” they initially made me feel very nauseous from the jerking of the images but they dont anymore and they are less frequent. Most of the time I just see white light disturbances. The neurologists believe it will eventually subside to nothingness.
I have lost half of my long very thick hair due to all the radiation over the long procedure which I wasnt warned about because it is so rare. Usually people only lose a little section if they do - but then again my surgery was rare in how long and intensive it was, so I guess they didnt fully know what to expect.
EDIT: here are some photos of my hair transformation:
And the total freaky collection of hair malted from my sore sore scalp:
Also and I beleive these four might be down to just swelling since they have all happened since I stopped the steroids, over the past week. I am waiting to hear back from my specialist nurse:
My left leg feels funny, I can walk and feel it but I cant balance on it and it feels as though I sat on it for a little too long. I cant balance on it at all either I immediatly call onto the other foot where as I can just about balance with effort on my right foot.
Admittedly didnt try writing before this week but I now find it difficult. It is not that I struggle to remember how to write or forgot the words. It is that I struggle to co-ordinate the pen to write, taking me longer and my handwritting has changed for the worse.
I also have been having intense dreams and waking up talking out loud which I did again back in the hospital but not since until now, never did it presurgery.
since yesterday I have began to have a pulsating pain around when my avm is and it’s been happening on and off ever since.
All this at 23. But even then after all this, I am so happy I did it and I am happier than I have ever been. For the first time in my life I wake up in the morning completely awake and refreshed. I have energy I never had before, I had always just considered myself a lazy person and it became a part of my identity as I was always tired ever since I can remember. But now once im AVM free I want to go for hikes, I want to enjoy runs and really work this beautiful body! I do get tired out by too much visual stimulation but it is only 3 weeks since my surgery. I can finally focus on conversations and feel so much calmer for it. I also for the first time after living with low self worth all my life can honestly say I fully love myself and despite being half bold and chopping the rest of my hair super short, I feel more beautiful than ever.
I lived my life in a negative cycle before: never feeling good enough, letting people push me around, worrying about peoples opinions of me, getting into relationships where my feelings and needs were not important but id constantly be looking to earn love and go above and beyond to meet their every need and want, holding onto resentments and hurt feelings. Having my life saved has really changed my mind set and I have let it all go and im just left with happiness.
I dont dwell on who wasnt there for me but I think of and feel so so blessed for who was. I went through a break up with my boyfriend of 2.5 years a week before christmas because I couldn’t handle the stress anymore. I was scared but I am so happy now that I did and proved to myself I could stand single and survive what ended up being alot more complex and intensive surgery than originally expected!
I would give up this sight any day for the feeling I feel now. I feel like a better me and I feel so grateful to be alive. Life used to feel like an option to me and now I have had to fight for it, I refuse to take it for granted. I have lost sight but gained alot more perspective!
I know the journey isnt over for me yet. But I am out of the major danger zone and the specialists believe they now have time to fully investigate in depth all options now: craniotomy, gamma knife, a final embolisation or if they assess the risk of losing the critical remaining sight compared to leaving it be, they will monitor it. I feel safe in their hands and it is out of my control so im focusing on my recovery and taking it easy without guilt for once.
This experience has also inspired me to founder “UK AVM meet up events” where I have hosted two events already. And I am now working on a blog sharing my AVM journey and other personal challenges I have faced. I have met some amazing people on this journey and even had 3 AVMers come to visit me at hospital including @DickD and @Shimarlie which means the world to me and truely warmed my heart <3
As long as I can read, I can complete my masters and graduate. I can become the chemical engineer I have worked so hard to be. And I also plan to spend the rest of my life advocating for minorities and people with disabilities and being a positive example. I dont see my visual impairment as a sob story, I see it as an opportunity to overcome and grow as a person. I have been terrified of losing this sight for so long and now that I have I realise it is so easy to make something in your head when you havent experienced it yet, the end of the world. There is some fear of what is to come but I dont let it take over my life anymore.
Another positive is the EEG results have shown I am not a seizure risk so I’ve managed to wein off the Topiramate, whose side effects I hate.
So that is my update!
I will be back on the site alot more now and anyone who would like to ask any questions - feel free to. And if anyone would like someone to talk to about anything, welcome to PM me.
My bestest wishes to you all and we are all in this together!