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AVM Survivors Network

Voice Issues - Now What?

Hi all,

So, the drama that is my life continues. I am three weeks into a preventative med that is supposed to help the headaches - has made no difference at all - except maybe to make me a bit more off balance when I up the dosage (Amitryptaline - 10 mg first week, increase by 10 every week to max of 50 mg.)

I had an appt with the Speech Pathology people because my voice is a fraction of what it was prior to the embolization on January 30. She wanted to “take some pictures” and so stuck what was essentially a high tech movie camera down my throat. Found out that not only is my left vocal cord paralyzed, but the arytenoid cartilage on the left side is “seriously non-responsive.” I don’t know fully what that means yet but she said some things that didn’t make me real comfortable - like “it’s not only a voice issue, it’s also a breathing and swallowing issue.” “If I saw these pictures before I met you, I would have imagined your voice to be much worse.”

So it looks like now we go back to the ENT doc to see what he thinks and what it all means - in the mean time, it makes me concerned - I don’t want to do anything that helps the voice but hurts the swallowing or breathing. How serious is this?

A whole additional layer of uncertainty - and that’s not helping the headaches at all either…

Okay, rant over.

Tom

Hey Tom,
You rant as much as you like. Some medicos have the sensitivity of a brick. I’m sure if they had ever been on the opposite side of the equation, the patient side, they would think twice about the way in which they interact with us. They often give us a fraction of the info, stress us out then say something stupid like 'Ohh but don’t stress…" How on earth do we not stress? I strongly believe that many dr’s need an education in human emotions. They deal with these conditions on a daily basis and that’s great, but for us, the patients it’s personal and often shocking to be told there is an issue “…but don’t stress…” WHAT? HOW??
Personally, I find I have to keep myself occupied, doing something, anything. Just something to keep my mind occupied so that I’m not going over and over and over the same questions. Repeating those same questions without having the answers simply stresses me out further and that doesn’t help at all.
I ‘try’ to look at what steps need to be taken, then make a plan around those steps. Who do I need to see, which specialists? When can I see them? Get it done. In the meantime I get as much information as possible to keep myself informed. Some medicos do not like this because it means I have information on which to question them and their processes, but having gone through this a few times I know they do not always tell us the whole scenario. Prior to an appointment I make a list of questions. I’ve found whilst in the actual appointment I can become a little (No, a lot) overwhelmed with the info they provide and forget to ask all the questions I have, so I use a list. I NEED those answers because otherwise those questions swirl around and around turning my mind to moosh.
So, go back to your ENT and see what he says. As for the headaches, take the meds and if they help, well and good. But if they don’t, tell them so. There maybe other options. Management of the psychological side is just as important as the physical and it can be a fine balance between the two. I initially took the “ugg, I man, I strong” attitude. “I don’t need the meds” but I did. Use every tool at your disposal to manage the ‘whole of life’ because, lets face it, the medical effects the whole of life.
I can assure you that uncertainty you have is normal, but you are taking the appropriate steps to clear as much of that uncertainty as possible and in my view that is about as much as you can possibly do.

Merl from the Moderator Support Team.

2 Likes

Tom,

You’ve got a lot going on. You’re a record breaker! Always feel free to rant.

I know nothing about the stuff you’re talking about but if I were you, what I’d be reading into the pathologist’s comments is that you can’t really afford to have any further damage. For me, making sure that you protect what you’ve got (voice is important but not as much as breathing and swallowing) is where it’s at. So I think my questions would be how we go about protecting the breathing and swallowing.

Wishing you all the best,

Richard