Hello,

[Guest guest]

I am so glad Sandy told me about this message board. I have been

hanging out lost in cyberspace with no where to go. I have had 2

surgeries at TCI. The first decompression with all the goodies that

go with it. It was a failed Chiari surgery because I was still having

symptoms. I had a second one . Dr B and M removed my plate only to

find a large hematoma under the plate and 60% of the bone they had

removed with the first surgery had grown back under the plate. DR M

said this was very unusual because bone growth only happens in

children. That surgery was 15 months after the first one. Now since

the second surgery I was tested by TCI and told I have Tethered cord

and cranio cervical instability. So now I need TC surgery and

cervical fusion. I am getting worse as each day goes by. I have been

getting a weird symptom that drives me crazy. It feels like my brain

is zapping. Almost like you stuck your finger in an electrical

socket. It is happening more and more frequently now. Bladder

control ? Whats that? hehehe. My bladder has a mind of its own. When

its wants to drip, then drip away it goes. Its embarrassing. I am

really tired of feeling like this . Chiari and everything associated

with it has just taken over my life. I hate this disease. I am just

waiting (for months) for someone from TCI to get back to me on

scheduling my surgery. Apparently there was a miscommunication on

which insurance to bill and the wrong one got billed. It has never

been corrected and I still sit and wait. I dont think anyone in the

office staff at TCI understands this sit and wait problem other than

another patient who has this awful diseasse. I am so down in the

dumps because all my symptoms have gotten so much worse. My headaches

are absolutely the worst . They are getting unbearable. I have an

awful one right now as i write this. I just took my meedication and I

am waiting for it to kick in so I can get up from the chair.The area

where my plate is hurts so much- it has been in 3 years. Neurological

I have all weird things going on that scare me but I have to sit and

wait until someone fixes some paperwork that just sits there. I am

upset. I love the Drs at TCI and I know it is not them that is

holding me back from surgery its just the people that do the billing.

But I sit here everyday watching myself slowly go downhill . I see

what it is doing to my husband and my sons. I see what it is doing to

me. It is taking my life away. I hate the pain and I hate every pill

I put in my body. I would love to go at least 1 full day without

having to take a narcotic to kill the headaches pain or the pain in

the back of my head from the plate.

I am glad you guys are here. Now I feel I am in a friendly place