About Me

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Im 41..married to Bob..we have 4 kids..Chris 25, Nick 20, Mitch 18 & Tori 15

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Me Brain

Story continued..

..July 3rd,07 was the day it all began.. unbearable neck pain..so after many dr appointments..I finally was able to see the drs with the answers at The Chiari Institute in Long Island NY..I was dx with Arnold Chiari Malformation,Syringomyelia, Ehlers-Danlos Syndrome, and Tethered Cord Syndrome..I also found I have herniated discs,buldging discs, Degenerative joint disease in my entire neck,cervical lordosis, spinal stenosis, valvular regurgitation in the tricuspid and mitral valves..this all hit me like an impossible nightmare..but it was a life that I had to make a decision to embrace..I want other chiarians to know that although there are not many of us out there..we all need each other to cheer us on.. some of us have great family and friends to support us..but there are still many of us who dont.. I have a supportive husband.. who see's how the headaches stop me in my tracks..or the neck pain that puts me on the couch with the heating pad..numbness..earaches and many other obsticles I have to overcome each day..many of my family and friends dont understand how it is in my shoes..Im here to share MY Story , highs and lows, information I dig up and offer support to people who need it...

Monday, September 29, 2008

Many Thanks

Many Thanks to all the wonderful emails...with prayers and support! I got home late tonight from Long Island. Iam wiped out. Its been a very long day. Dr Verma is very nice. He explained everything in great detail. Which is exactly what I needed.

I was able to meet with someone at TCI today..Leigh...that I met online. We talked most of the day. Its always nice to meet new people to share your story with..and offer a listening ear. Its always a tough day to get through on your first visit.

I went to CT yesterday..to meet with the Chiari of CT Support and Awareness group. A couple of other NY chiari friends went with me. My wonderful husband was our chauffeur. It was nice to see everyone before my surgery.

My oldest son..Chris..will be posting here for me. To keep everyone updated.

Thank you again..for all the prayers, good vibes and kind words of support....it makes me feel all warm and fuzzy inside...knowing I have so many cheerleaders rooting for me!


lace1070 said...

I heard this verse this morning on the way into work and instantly thought of you ~
Psalm 37:23 (New Living Translation):
"23 The Lord directs the steps of the godly.He delights in every detail of their lives."

Know that every detail is being taken care of :) Love ya ~ Lace

Laurie said...


I just read an update of your surgery over at the ASAP board. I am happy to hear everything went well. I will be checking back for more updates from your son. As always you and your family are in my thoughts and prayers.

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