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AVM Survivors Network

New member from Nevada, USA...dAVF


#21

HW,
I also had a Davf and was treated via embo. Afterwards I did see some intermittent visual effects and my hearing was amplified. The doc says rerouting of blood to the brain instead of the veins results some some temporary effects, because they were additive effects we felt confident in that. It went away in a few weeks. I was worried as well but the doc was right. Hope that helps!


#22

Our local health system has a computer system called “My Health.” It’s great because you can see records and such - but the best part is it has a secure e-mail server. So I can sit down and write through a questions and then when I think it’s a solid list, I can send it. With all of my docs, we have an agreement - if I think it’s urgent, I’ll call. If an answer in a couple of days is okay, then I’ll e-mail. Most of my docs have said they love it. One doc - the neurologist (as opposed to the neurosurgeion who did the embolization) said I need to send shorter e-mails. :slight_smile: I think he doesn’t like being questioned about what’s happening.

And frankly, all he’s done is said, “try this drug (amitryptiline) start low and go up every week (started at 10 mg now we’re at 75 mg)” “oh, that didn’t work, let’s add topamax - started at 25 mg, increasing by 25 mg every two weeks.” I’m now at 25 mg in the morning and 50 mg at night a week from Friday, I’ll max out at 100 mg in total. Have they helped? I describe it sort of like a lump of clay - it’s round, you drop it on the floor, it’s not quite the same shape any more, but it’s still the same lump of clay. Then, squish it with a book, same lump of clay.

That’s the headaches - different, but still there.

Wow, hijacked that one.

Sorry HW,

Tom


#23

I thank you all. I try to make my questions to doctors meaty. I have not had pulsatile tinnitus for 5 nights and the headaches are minor, controllable with 2000 mg acetaminophen a day. Balance is much better. I’ll try in-home exercise today.


#24

Update-- so far so good. Dizziness is gradually resolving, almost unnoticeable right now.


#25

Sounds like you’re doing brilliantly! Keep it up!

Richard


#26

Not out of the woods yet – remaining unclosed feeder may bring the PT back as it widens. But I’m compensating well while I wait for the other shoe to drop.


#27

I think there are several reasons why I can’t do that manoeuvre! You’re doing brilliantly! Keep it up and I hope that residual circuit doesn’t give you any jip. Have you got a revisit planned to close it off?


#28

I’m supposed to go in 4-5 months. Feel a very faint pulse in my left ear – more like a heartbeat, very low. Last night I had a dream the PT was back! Woke up and nothing.


#29

Update: among the odd “side-effects” I now have:

  1. I’m very sensitive to some sounds on the left side (side of the original PT) – my wife knocked over a bottle in front of me today, and I jumped and felt almost pain in my left ear.

  2. I have a very faint, unvarying regular tinnitus, almost a white noise, in my left ear. It goes away at times, doesn’t interfere with sleep, except when I think, “what does it mean?”


#30

HW - Sorry I didn’t see this sooner. Your and my left ears have a lot in common - with one exception. “Mine is louder than yours is!” No, seriously, it’s a non-stop white noise/jet noise, that varies occasionally in sound level but never goes away.

I have extreme sensitivity to noise - mainly in my left ear. Sometimes it causes immediate pain sometimes it causes a “next day hangover.” A busy day with church, kids choir concert and I know I’m going to have a headache the next day.

What two things hurt it most? My 17 year old daughter’s whiny “diva” voice which she uses a lot and two of our three dogs who bark any time there is even a leaf falling.

“And the beat goes on…”

Tom


#31

Thanks! My white noise has gotten less, knock on wood. I was even able to use ear plugs for several nights, without the noise being intolerable in the absence of background

Just got back from my check-up angio – went much better than expected. For the moment, I’m hopeful.