ANA Discussion Forum
Post-Treatment => Post-Treatment => Topic started by: Marie in CA on December 10, 2008, 04:48:48 pm
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Well it has been 2 years since onset of symptoms and one year since my CK and I finally can report good things.
A brief history:
2 years ago (Dec 2, 2006, It was a milestone day for a project I was on and I wrote a note about it to myself) I started noticing that things didn't sound right. To my perception people sounded like robots. The first doctor told me flat out, that was impossible.
It took 6 months to get a correct diagnosis, fighting to get a doctor to listen to me (ironic) Coincidentally at this time my mother was diagnosed with advancing Alzheimer's. Between that and insurance fun, it took another 6 months to schedule the CK (Nov 28 - Nov 30, 2007)
Right after the CK it was bad. Any loud noises, external or by me and my left facial nerve would deaden. It was my first Christmas season that I didn't sing that I could remember. Trying to use the phone on the left side was a joke.
The 6 Month MRI was inconclusive. The White Blob of Doom, as I took to calling it, looked essentially the same. I would still get a facial tic if I sang. The doctor advised me to keep trying at it.
It is now a year. In the 1 Year MRI the blob seemed mottled and a little smaller. The doctor said that this could be due to the difference in slices, but as we panned through the views it definitely had a less robust look. I have been singing with the congregation for a couple of months now with no facial issues. I tried going to a choir rehearsal a month ago and made it through, but I was buzzing the next day. Not yet for that, but at least I get to sing at Christmas. I can hear the phone on the left. It sounds tinny with a drastic loss in the bass (All my hearing test show that I have lost bass in that ear), but I can make out the conversation completely.
I am slowly piecing my life back together after the multiple blows it has taken over the past couple of years, but all in all, things are heading in the right direction.
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glad to hear the progress and the good news, best to you in the year to come
bill from philly
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Marie -
glad to hear things are going well for you.
One of the keys to recovery from AN treatment - be it radiation or surgery - is patience.
Jan
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Hi Marie,
"Mottled and smaller...less robust." These sound like good signs to me. Plus you are doing much better with the facial issue, and getting some tinny hearing back. All in all, a good report, I think. Congratulations on your 1st anniversary! And may you have many more, and even better ones.
Steve
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Marie,
Congratulations on your one year anniversary! It sounds like things are going reallly well and I'm sure will just continue to get better.
Wishing you a joyful holiday,
Wendy
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Marie:
I somehow overlooked this wonderful news when it was first posted but I wanted to respond to it now by simply offering my congratulations and wish for continued healing as you resume your normal activities. Well, that and: Merry Christmas! :)
Jim
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Congratulations, Marie, on your great news. That's amazing that you got some hearing back over the last year. It gives me hope, as I have also had some additional -- albeit mild -- hearing loss since CK.
How big was your AN when it was treated? And which facility and doctors performed the CK?
Tumbleweed
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Marie,
It is soooo good to hear about your progress. It infuriates me that it took you so long to get the diagnosis.
I willl be 7 months post CK on the 2nd so it gives me hope that the increasing symptoms can indeed reverse and seems to do that with so many symptomatic post CKers!
Hooray for Marie!
Mary 8)