Hello and my intro

[Guest guest]

Hello Everyone,

I wanted to introduce myself as I'm new to this group but not to

Chiari/tethered cord and/or possibly cervical instability.

I was diagnosed with Chiari in 2002 after what most would describe as

a short time (12 months of specialists and docs ruling out every

other diagnosis) from fibromyalgia (sp?) to cancer. . . . I live in

Wyoming and it's not a well populated state with a high volume of

Chiari patients so it's not well recognized, yet! I was decompressed

in MT in May 2002 and was doing well for the most part until Fall of

2004 when I began to have a onset of symptoms. I ignored them for

the most part as they just began slowly.

It wasn't until 05 when I couldn't ignore them any longer. I was

working part-time due to the illness, long-lasting headaches, nausea,

dizziness, bladder issues, back pain, all-over back pain, leg pain,

right-sided pain. . you name - I seemed to be a mess! Of course, the

docs first thought I was depressed - I was. . . . so there go the

meds. .load them up!! So, now I'm tired, depressed, still in pain

and have no answers. I have now gone back to my neurosurgeon that

did the decompression who shows me on the MRI how wonderful my

decompression is and that I need a neurologist as Botox will fix my

neck muscles that are spasming creating my pain. So, I try the

Botox - nope didn't work. My oldest daughter, who had just turned 18

walked in my room one day and looked at me with tears in her eyes and

said. " I just want my mom back, will you please call that place in

NY? " That was a shot in my heart.

I called TCI and got to NY in March 06 and saw Dr. B of course,

nothing is easy for a Chiarian. . . I must firstscare Dr. Kula/Mora

and the nurse (sorry can't remember who I saw) with high blood

pressure of 180/120 and then be allergic to the medicine and take an

ambulance ride to the ER dept of North Shores hospital. . . then see

Dr. B. the next day. . . well, he says. . . you definitely have

Tethered cord and CranioCervical Instability.

Fast forward, April 06, have the tethered cord surgery - doing better

and feeling pretty good through the summer. Then about fall again

(maybe it's the weather), I started not so good but I don't want a

fusion surgery. I'm trying my darndest not to have that surgery.

It's hard to hold up my head but I don't want that surgery. It

terrifies me. I still suffer some headaches. I'm on Topomax,

Effexor, Soma and working full-time in child-support. Nice easy

relaxing job. (humor- gets me through the day)

I just don't want this fusion surgery - I'm terrified of it. I am

doing 80% better than last year. My bladder is better, my headaches

65% better - still can't overdue anything, neck - day by day but

getting stronger, I'm doing home-traction. . . for 2 weeks now not

sure about it. . . . I'm just confused. I have episodes where I'll

be sleeping and wake up with nausea and dizziness and need to drink

Coke/root beer fast to get rid of that feeling. Anyone else have

that? There are things I just don't want to eat. My appetite has

changed for sure. It's like I'm really not me.

Anyone with experience on this please feel free to respond.

Thanks,

Wyoming