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AVM Survivors Network

I'm not sure it matters but


#1

Hey all,

First some background and then the question:

I am 10 days shy of 6 months since the embolization that probably saved my life but also changed it dramatically. In a shortened version - paralyzed vocal cord - so difficulty speaking, shortness of breath and swallowing. Ear problems - lost almost all hearing in left ear, significant (to the point that I can’t hear with hearing aids in) internal head noise (hat tip to Dick #noisyheadguy), probably 3/4th of the day, I feel like I’m on a cruise ship #cruiseshipwobblies and constant headaches. The headaches go up and down but they are always there. They.are.always.there. Drives me nuts many days.

Neurologist put me on Amitryptiline for the headaches - all it has really done is lowered the “spikes” in the headaches from an 8 to a 6. Prior to the Amytriptyline, I used to hit 8 at least two times a day - now, well I hit it a number of times yesterday - but beyond that it’s only a couple of times a week that I get to an 8.

So my question - and one that I’ll be asking my doctors is this:

Are all of these challenges because the embolization blocked or damaged nerves or cut off blood supply to the nerves?

or

Are all of these because in the process of the embolization, part or parts of my brain were damaged?

There are a couple of things I have noticed in terms of what I could call cognitive deficits:
I have a much harder time with remembering names,
I have a hard time remembering if I did things - like, “Did you take your med that you are supposed to take at _______.”
I have to be much more methodical in how I do things - otherwise, I won’t remember and will miss something. Like, when you pick up Abby from youth group, can you also do ______ and drop off _____.
and I do drive but I feel like except on the highway, I’m much more hesitant and slower in terms of, well, I drive with the caution that someone from Michigan would normally do only in a January snow storm.

Now, the real question - does it matter if the damage happened in the nerves or in the brain?

Is it sort of like it doesn’t matter if the power is out on your street or on just the line to your house. Either way, the power is out.

Does that make any sense at all?

Tom


#2

Tom,

No idea.

Many years ago, I crashed my car. In fact it was my very first car. I was crossing a junction which cut a 45 degree angle across two lanes, a central reservation and then onto the far carriageway. The light was on green, it changed to amber and I ploughed into the side of a car coming out of town on the near carriageway.

Was it his fault? He said he thought the light was green. I knew it changed as I got to the junction. Or was it my fault? Had I gone through just that bit too late and I really should have stopped?

It didn’t really matter. His car was a write off. My car was a write off. Neither of us got to drive where we were going that day. The good thing was that no one was seriously injured.

What I hope for you is that it is still early days post embo and I hope you do get a bit better. I don’t know if you will or how much but I have been surprised by how long it took for me to feel better. I would say it has taken me a year so far. Not sure I’m getting any better now but I definitely felt a bit better by the year than at 6 months.

Best wishes always

Richard


#3

Hey Tom, sounds like you’re still trying to understand exactly what happened to you. I hope you find answers that make sense. For me, bad headaches preceded all of this and seems to be the one thing I traded away. Remembering back that was probably the worst symptom. I hope you make some progress here sooner than later. I developed some hearing loss and ringing. Both very mild in my case. I speculate that some area that was fed by the AVM is now starving and that is causing the headeaches. I would think in time it would work itself out and the headaches would diminish.
On the cognitive, you’ve got an interesting puzzle to work out. A bit like the movie Momento. Scatter brained is not limited to us AVMers.
I would like to share the case of my Uncle. He’s had some type of stroke or something. No physical deficits seems to understand things pretty well. But talks in nonsense now. Regular words but in no particular order. How the brain does what it does is fascinating.