having surgery and have questions

[Guest guest]

I received a private e-mail from (20 yrs old) who has chiari and syrinx

and will be having surgery July 10th. She would like to hear from anyone who

has had surgery and what she should expect, and was your surgery a success.

Please e-mail her privately as she is not a member and says she would be

overwhelmed at this point with all the daily mailings. You may contact her at

PhreddyAnn@...

Here is a little of what she wrote:

I'm not quite sure how long my chiari is, but I believe my syrinx is about 4

or 5 inches long. My symptoms are loss of sensation of hot, cold, and pain on

just the right side of my body (from below my shoulder to my foot), numbness

in my feet and tingling in my hands, headaches and backaches,

lightheadedness, and aches in my right torso. I also have a very small case

of scoliosis.

The doctor has told me that he will be shaving off a small portion of the

bone at the base of my skull to relieve the pressure on the tonsilation. He

is not sure if he will be opening the dura or using a patch until the

operation.

I got a second opinion from Dr. Meneces at the University of Iowa Hospital

and Clinics (I go to school there) and he agreed that surgery shouldn't wait

too much longer.

The doctors have said that my chances of stopping the progression of the

syrinx will be decreased as I get older. I am content with the thought that I

may have my symptoms for the rest of my life, I just don't want them to get

any worse.

She would appreciate any information you can give.

thanks

('s mom) is 12 y/o

ACM 1, Dx:July ' 99

20 mm herniation (has not had surgery)