Fellow avm survivor from UK here. I had gotten operated for brain avm by emobilization and gk in 2020 and 2022 respectively . I got Terrible brain swelling this year leading to 5 days hospitalisation. I am currently on dexamethasone 2mg per day. I am noticing some slurred speech and left hand weakness. There’s also left facial weakness. The doctor’s opinion is that it’s due to the swelling in brain and symptoms will reside with reduction in swelling. I have too much anxiety now. I can’t speak loudly and clearly. I can’t even smile well . My social skills are affected because of this.Did anyone experience similar side effects ? Should i go to a speech therapist? Any inputs are welcome
Sorry to hear this. I had GK and did have some swelling around the 6 month mark but didn’t need the steroids. I had dexamethasone after my bleed but was fortunate to not need it following GK. How long have you experienced the effects? Have you had any scans completed to ensure the effects are being caused by swelling? I think usually the steroids help but do come with some down side for sure. You might want to explore some alternative type treatments that may help, for example hyperbaric chamber is one hat comes to mind as a consideration. Some people have really beneficial results, while like all things some don’t. I hope you can get it straightened out. Take Care, John
Hi john
The symptoms started few months back with headache and double vision. Had two mri’s which revealed oedema. I don’t think the doctors are too concerned about my case right now since I have started steroids and my symptoms are not unstable and emergency worthy.
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Good news, and it sounds you are very in tune with what is going on and changing which is great! John.
Hi Radhika,
Sorry to hear that you’re going through all of this. I’m actually in a very similar boat—currently dealing with swelling following GK and taking decadron (I can’t ever spell its actual name). I know I’ve experienced some social anxiety too, and think a lot about how I’m speaking and acting around other people. I’ve lost some vision, and I’ve noticed I have trouble finding words in conversation sometimes and it feels really noticeable to me. Sometimes I have to remind myself that what might feel really apparent to me, might not be to those around me. Especially since I know what I’m used to operating like, if that makes sense. It’s really difficult, and I’m sorry to hear you’re also dealing with all of this. I hope everything resolves for you with the steroids!
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I’m sure this is true. It’s a good thought.
That’s helpful. Thanks. I feel like me not smiling and talking monotonous has really impacted me and how people perceive me. I have s
tarted speech therapy. Let’s hope for the best. Will keep the status updated
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Hi Radhika
I was offered some speech therapy: ‘We’ discovered that I had problems within group speech - I was slower than before and couldn’t get a chance to get a word in, couldn’t find the correct word, plus with my work I was ‘losing’ words.
In (and out of) the therapy I did exercises that helped me to regain my confidence with techniques in finding other ways of expressing what I wanted to say.
It was so helpful, and after 3 months worth I was ready to be more active in conversations (which was important because it was the pandemic when I was diagnosed and the video chat was regular) and also, it was important to explain to my friends and family what my new needs are - it’s still taking time for everyone to remember…
I couldn’t smile for a while and avoided all mirrors after taking steroids…it’s all change now, so good luck to You!
Joanne
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Hi jo jo
Your story is inspiring. Thank you for your motivation. Your discipline is praiseworthy. Will it be possible to go back to how i was before once the swelling in my brain reduces? Or is it something i will have to live with?
I’m sorry you have to deal with all of that, that sounds really difficult. I hope that speech therapy goes well and is helpful for you, sending you positive thoughts!
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