July 2004
I just got back from my exam out in Iowa. Things are stable. I had appointments with my Neurosurgeon(for my yearly MRI), Neuro opthamologist(for testing for my vision problems) and an Otolyrangologist (ENT)(for swallow evaluation and palate issues).
The running theme between all the doctors was yes you have alot of problems, it is caused Brain Stem damage due to having too many surgeries, and there is not much we can do.
As for my vision- I have been experiencing blurry vision and problems focussing on objects. Most of the time it feels like things are moving back and forth. Because I have many problems with dizziness and vertigo, I figured this was the cause. Turns out I have involuntary movements of my eyes(nystmus) and a more unusual pulsating of the iris of my eyes. No wonder I can't see anything! Possible treatment involves taking medication that would be sedating or the old suck up and deal method. I choose suck up and deal.
As for the ENT- The swallow evaluation showed that food does get stuck in my throat but does not appear to be a danger to me. I can usually clear it after a little effort. I have to be careful and avoid food and things that I know are problems for me(dry food, thick pasta, french fries, big pills etc.) As for the palate issues I'm probablly going to look into getting a prosthesis because surgery(although the more desirable treatment) is not really an option for me. Too many surgeries, too much scar tissue, not able to be intubated etc.
Neurologically- I'm stable He wants me to continue with the arthritis medication, continue with the headache medication, and add a muscle relaxer on the days when my neck is out of sorts. Not much more I can do to help improve my life with pain etc.
Overall it was productive. I had good exams it justified the symptoms I am experiencing. Unfortunately there are no good answers and I'm just going to have to live with it. I had a hard time with that I was hoping that someone could make my life a bit easier. I'm not sure where I'm going from here but I guess I will figure it out.
The running theme between all the doctors was yes you have alot of problems, it is caused Brain Stem damage due to having too many surgeries, and there is not much we can do.
As for my vision- I have been experiencing blurry vision and problems focussing on objects. Most of the time it feels like things are moving back and forth. Because I have many problems with dizziness and vertigo, I figured this was the cause. Turns out I have involuntary movements of my eyes(nystmus) and a more unusual pulsating of the iris of my eyes. No wonder I can't see anything! Possible treatment involves taking medication that would be sedating or the old suck up and deal method. I choose suck up and deal.
As for the ENT- The swallow evaluation showed that food does get stuck in my throat but does not appear to be a danger to me. I can usually clear it after a little effort. I have to be careful and avoid food and things that I know are problems for me(dry food, thick pasta, french fries, big pills etc.) As for the palate issues I'm probablly going to look into getting a prosthesis because surgery(although the more desirable treatment) is not really an option for me. Too many surgeries, too much scar tissue, not able to be intubated etc.
Neurologically- I'm stable He wants me to continue with the arthritis medication, continue with the headache medication, and add a muscle relaxer on the days when my neck is out of sorts. Not much more I can do to help improve my life with pain etc.
Overall it was productive. I had good exams it justified the symptoms I am experiencing. Unfortunately there are no good answers and I'm just going to have to live with it. I had a hard time with that I was hoping that someone could make my life a bit easier. I'm not sure where I'm going from here but I guess I will figure it out.
posted by Erika at 5:20 PM
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