diagnosed by Heffez (long) please read!

[Guest guest]

Hi everyone. I havent written to the list in a month or so because I really had

nothing to say, but I sure do now!! I canot believe what I am just about to

write, but yesterday I got the call from the nurse practicioner that works with

Dr. Heffez. He diagnosed me with a chiari malformation and that I MAY also have

cervical spine stenosis (He said he needs another test to determine the stenosis

for sure).

I am completely shocked!! I dont even know what to do! For those of you who

dont know me or dont remember me, I am just about 27 years old and from Long

Island. I have been sick, stuck at home, with Chronic Fatigue Syndrome,

Fibromyalgia and blood pressure problems for 2 years now. I was just recently

diagnosed with several arrythmias, PVC's and a VERY rapid heart rate by a

cardiologist. I saw the Dateline show a few months back and right afterwards

found this list. I had a CINE MRI of the brain and an MRI of the cervical spine

and then sent the films to Dr. Heffez (saw him on 20/20 too). That was about 1

1/2 months ago.

I never thought in a million years that I would be told I have this. I am

really scared and nervous. The nurse practitioner said that the doctor said I

definitley have it and he wanted to schedule surgery!!! Obviously I didnt

schedule anything. I havent even spoken to the doctor!!! I asked him to send

my films back to me so I could get a second opinion, but who do I send my films

to now??? I have heard a few not so good things about Dr. Weingart. Dr.

Milhorat is only about 1 1/2 hours away from me, so obviously this would be more

convenient for me, but I remember hearing that he does something different in

his operation that the other doctors dont do. Could someone please explain this

to me and the pros and cons??

I guess I will just wait till I get my second opinion to make a decision. I

want to see the doctor before hand too. Does it matter how long I wait? I

mean, the more I wait, will it get any worse? For me, somedays are better than

others. I never know how I am going to wake up.

I just never thought I would be diagnosed with this. I dont have some of the

symptoms that many of you talk about....I dont have problems swallowing, no

numbness, no ringing in my ears... My biggest problem is the exhaustion. I

sleep 12-15 hours a night and am NEVER awake. I am very off-balanced too. I

also was just diagnosed by a cardiologist with several different arrythmias,

PVC's and a VERY fast heart rate. He just put me on Inderal. Could this ALL be

related???

I hope someone will help me out. This list is such a support to everyone, and I

guess I finally am going to be in need of it!!! Thank you to anyone who has

actually read this

---Michele U.