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AVM Survivors Network

Damaged Hearing Question


#1

Hi all, I’ve got a question. I had an embolization in January (the fourth major one over the last 40 years. Yes, forty, I’m old. LOL.

Until this one, I was able to return to pretty much normal life within weeks. This one, well, November 30 will be 10 months and the docs still don’t know if I’ll get any improvement. I think they did a major amount of damage to a number of my cranial nerves.

But that’s not why I’m writing right now, I have a very specific question. Maybe two or three times a day, for a varying length of time, when I say something, my own voice will vibrate up thru the bones in my head and up to the top of my skull. It is a very uncomfortable if not painful thing. The second I stop talking the pain drops but it’s like it goes from a 2 to a 7 to a 2.5 to a 7 to a … and if I go to a meeting at church and it is doing that by the end of the meeting I’m straight 8’s all the way around.

My kids tell me I’m one of a kind (and I don’t think they mean it in a nice way - at least not the teenagers - LOL) anyone else have something like that or any ideas?

TJ


#2

I haven’t experienced what you are describing but did experience something a little similar. I was having a tough time as my pulsatile tinnitus was increasing, my voice was echoing and ears seemed always clogged. It was almost like advanced conductive hearing overriding the usual route of through the ear canal. I employed Doc Google and determined I may have been experiencing some Eustachian tube dysfunction. This was going on for several weeks and while not sick had a little bit of a sniffle. I started nasal irrigation with salt water and did this for a couple weeks and over time has certainly returned to where I was. Tinnitus is reduced and the other symptoms have disappeared. I was fearful it was associated to the bleed and gamma knife and was getting fairly convinced as time was going by but now to believe it was my Eustachian tubes that was resolved slowly with the irrigation.

I believe I’ve read one of your posts sometime ago about seeing an ENT, if that is the case I would guess they would have identified if this was the case for you but thought I would put it out there. It was something new on me. Take Care, John.


#3

John, Thanks for sharing that - I’ve seen my ENT doc I think three times since this happened in January and I’ve also seen an otologist - in the Otolaryngology group at U of M and the laryngologist there twice. They have looked in and under and through and around and well, you get the point, feeling very much like they have all examined my head and then pulled back looked at each other, scratched their own heads and said, “Wtf, I ain’t seen this before!”

It’s either laugh or cry, for now I’m trying very hard to laugh.

Tom