Anyone who has had their AVM successfully treated? When the thing is completely gone are the symptoms gone too? Like whoosing sounds, headaches, and tiredness? I am so tired of this mess. I have just been Dx but have been having these things happen for quite awhile but didn't know what it was. I am so ready to feel normal again! Any thoughts?
The whoosing sound (called a bruit) happens when high pressure blood flows to veins not going through capillaries. If your AVM is gone, the bruit should be gone as well. When Chari had her embos, the bruit became quieter with each embo, and after surgery, it was gone. Since she'd known it's noise since birth, it was her calming noise which allowed her to go to sleep. Now that it was gone, she missed it!!!!!!!!!!!!!!!! Took her awhile to get over it.
Rest of the symptoms, don't know. Might not change.
Hi Melissa-it might be different for you, but I’ve come to know today as my new-or now-normal.
My AVM has been obilerated, and I have MANY changes from my “former” life…which took for me some time to develop a different perspective in realizing my newly acquired strengths…which really weren’t invited, but kind of just moved in. Ummm…thanks?
I think that’s what helped me the most in adapting to this new life…the realization that my “start-over” baseline is/was, for me anyway, post coma and surgery…versus pre-coma or pre-surgery.
I can now look back at that time-which was pretty bleak-and see how much I’ve grown…not quite a “habit” yet per se, but I’m working on switching up that “recording” in my head.
My bruit was the same. Had it since I was about 3 or 4. Then it was gone after my crani. it took me a while to get used to the quiet. What's weird is discovering how much I relied on that damn thing. It put me to sleep, I sometimes would count my "ins and outs" with it not knowing that I was counting down to a major stroke that would change my life indefinitely. I often referred to it as my own personal sea because sometimes it was like listening to water over sand. I didn't know that I had never heard silence until weeks after my surgery. I had this grinding noise in my ear constantly followed by this cracking and popping that was my skull settling the drs said. Now I experience this noise that's similar to fresh soda in a can. Like the carbonation fizzing against the can. No one can explain this noise to me.
As for tiredness, it's been almost a year and a half since my crani and right now I 'm struggling to stay awake. I am always fighting migraines but am getting them under control with diet as well as working towards a more normal sleep pattern. But I am on Keppra and now a muscle relaxer. I know Keppra can make people lethargic and have read on this network that a lot of people see immediate improvement in energy once finished with Keppra.
Once my AVM was completely removed, the only side effect I had and still do is the tiredness. I constantly find myself needing just a quick nap here and there but that's pretty much it. Hope you're feeling better! xoxoxo
Sounds like the tiredness is part of the "new" normal for us AVM survivors as I am sleeping a good 10 to 12 hours a night...and sometimes with a nap in between. While I wish I felt more rested at times, this is certainly a new normal that I can get used to :)!
Hang in there and be ok with adjusting to a "new" normal.