Pushing for the right answers

Hey all,

An interesting thought I wanted to share with any of you who want to read my ramblings…

Yesterday I met with a new speech language therapist - who apparently has a lot of experience not only dealing with speech issues but also with vocal/voice issues. So she’s got me coming and going.

We talked a lot about my story and I was very impressed because it was obvious that she had read my entire file (no small achievement). We talked about what we’d like to try to achieve, what we thought might be achievable and what might not. Then she asked me, "How does this sound? Step 1 - I believe that in situations like this, exercises and practice is not what you need. Instead, we need to work first to learn what we have and figure out how we can make that last and work best in what you need for life. It’s sort of like if you have enough gas to go 100 miles, you need to make sure that whatever route you take to your destination gets you there, if possible in less than 100 miles worth of gas. If your voice has 4 hours worth of talking in it per day, then let’s figure out how to get through a day with less than four hours of talking. I’m thinking, “Okay, I really like the way this lady thinks.”

Then she says, “This will probably take us 2 to 4 weeks of weekly meetings to get it figured out. During that time, I’ll do some research, talk to your ENT doc here in Grand Rapids and the laryngologist at the U of M and review the film from the Swallow study that Dr. Morrison did and discuss it with some of my people here.”

“Then we will sit down and talk about what I’ve found, what they know, what I know, what I think we could do, what I think might be out there and what to do from there.”

“How does that sound?”

Now granted all of this TBI stuff makes me more emotional any way but I almost could have hugged her. That’s exactly what I hoped for. Someone who says, “I don’t know all the answers, I"ll see if I can get them and then we’ll talk about whether I do or whether someone else does.”

Tonight I will pray a separate prayer that all of my friends on here (the ones I know by name and the ones who listen and watch from the sidelines - like I did until last January) that God will put someone in your path like Lynn and that she will help you find the right answers for all of the issues you might be dealing with.

And that we all get about 20 extra measures of patience as we deal with all that this nasty little blood vessel thing has thrown at us.

God is good, all the time.

Even when we can’t see it.



A huge BIG +1 to you and to Lynn.
Often this is exactly the sort of advocate we need. Someone to pull all of the information together, someone to consult with all of the departments involved, someone to understand and comprehend our limitations and someone to help make a plan with all of these things taken into consideration.
Finding a single individual who is willing and able to do all of this can be damn near impossible, many will say “Ohh well, that’s not my role… …I can do step A & B, but step C,D,E etc,etc. That’s someone else’s job”. But to have an individual willing and able to consult AND then to involve you too. That is rare. That is one you want to keep real close.

Merl from the Moderator Support Team

I totally agree. God is good all the time; and all the time, God is good. I pray that your AVM journey is filled with baby steps so that you can start taking giant steps. There is nothing easy about the effort needed in order to get our AVM-monsters under control. If we are lucky, our AVM’s may be totally eradicated. Many members on this site have experienced total eradication and I am truly happy for them. My AVM journey is inching towards 5 years. I am a whole lot better, but I am not quite 100%. 75% maybe! Other than Tylenol, the only medicine I use to deal and heal my AVM is P&P (Prayer & Patience). Continued blessings to you.

It sounds like you found a good doctor, somebody that knows they don’t know everything and is willing to learn and work with you to get the best results for you!
I have found too many doctors that tell you what you want to hear and are vague because they’re not sure; I like the ones that are upfront, honest and hit you between the eyes and say let’s figure this out together.