update

[Guest guest]

Hi Everyone,

          I haven¢t posted since I was diagnosed 08/14/08 with ACM 1. I went to

my first NS appointment yesterday seen DR. Capocelli in Fort AR. He is a

very likeable DR and I was impressed with his knowledge of the subject at hand,

he dedicated t a lot of time with me and reviewed all the information in-depth

before entering the exam room. He commended me on how well I had documented all

my symptoms and the fact that I had every report readily available.  DR. C was

really surprised when he found out that the DR in here in had not ordered

other testing when the Chiari was found. So he has order a Cervical and Thoracic

MRI which I will done here in and a Cine MRI which I will have the day of

my next appointment with him which will be Nov 14th. He wanted me back in 2

weeks but his schedule was not able to accommodate the 2 week time period. Since

the only MRI¢S I was able to provide him where of the Brain and Lumbar he was

not able to tell if I had Syringomyelia or what else could be going on.

 

I can¢t tell you how nice it was to hear him walk in and say you have Chiari

alright and every one of your symptoms is a direct result of the Chiari. Instead

of being told you¢re having panic attack and being talked to like your crazy.

 

He talked to me about the decompression surgery and stated instead of skin

graphing over the dura they would actually use a plate.

 

Since April I¢ve lost a big portion of my hearing, severe in the left ear and

moderate severe in the right. I had a repeat hearing test at 3 week and it

indicates the hearing had already dropped again 5 decimals and my eyes have

worsened in 3 months. The Ecog and VNG test indicated I have Bi-Lateral

Menieres, Vertical Nystgmas, and no tracking gain of the right eye, slow

velocity of the Left eye and caloric weakness of the right side.  The eye CT I

had done indicate retina swelling of the Left Eye. I¢ve had my hearing aids for

about 4 weeks now and it has helped with the hearing somewhat. But the ringing

in my ears is still there in full force. My audiologist is going to repeat the

test because she wasn¢t sure it would be ok to do the Dix Hallpike maneuvers

with the Chiari. DR C said go ahead and have it done, hat I wouldn¢t be in the

position long enough to cause any damage.

 

It sounds as though I¢m going to be joining the Zipperhead community in the near

future.

 

Hugs To All, Jacki