Hi, I’m new to all this, so at the beginning of May, I lost vision in my right eye, went to the eye clinic she said there’s something, so she sent me for MRI, went for results thinking I’d get drops for the eye, but no she said there’s two things the early signs of multiple sclerosis and an abnormal blood vessel, which I later found out was the avm, so after months I’m now waiting for the stereotactic radio surgery, I’d never Hurd of an avm before, I’m 44 with a young son and some days are hard
Hi Sarah,
I had never heard of an AVM until my bleed, either. In fact, I had no prior symptoms until the bleed. I had it treated six months post-bleed with the Gamma Knife surgery, and then another smaller area was treated with the same surgery over five years later.
Although it has been almost eleven years since my bleed, I completely understand what it is like to have “hard days.” I deal with short-term memory loss and fatigue as a long-term effect. I have found though that too much mental stimulus makes it worse. For example, after a noisy family get-together, I will usually spend the next day just resting on the couch (not sleeping, mind you, just resting my mind. I found people without a brain injury don’t know the difference between “tired” and “fatigued.”). Try to find your “triggers” and see if you can work to avoid them, if possible.
I wish you all the best!
-Julia
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Hi Sarah,
We’ll done for starting your own topic!
Did the early MS diagnosis stand up or was it just a scare? One of my doctors gave me my initial MRI scan results and that showed stuff that sounds MS-related but it is not something that anyone has taken further.
Last year my optician told me that I had macular degeneration but tests through last year concluded not, so whilst an optician appointment can indicate stuff, I’m not sure it always bears out.
Best wishes,
Richard
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Hi Sarah, its great you’re here. I have an AVM in my left temporal that bleed last May and I had gamma knife last November. I have two children, now 13 and 12. You’re right, some days are hard, I couldn’t agree more. A lot of folks on here can relate, although we certainly are all different as are our AVMs. A warm welcome to you, Take Care, John.
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Hi John, and thank you for the warm welcome, all the best and take care xx
Hi I’m still waiting to hear more about the ms, as the doc wants to deal with the avm as he said that’s more important so none the wiser
Sarah