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...

Thursday, November 13, 2008

The Story continues.....

As the world turns... It's been a wild ride. This is enough of a roller coaster for me. I was feeling great up until a couple of weeks ago. I started having headaches again..about 2 weeks ago. I also stared with dizziness again, but it is different now. I have it with just movement. Its gotten worse in the last few days. I have almost blacked out on more than a couple of occasions. I emailed Dr Bolognese a few days ago, but my computer was down for a couple of days, so I wasnt able to check my mail. I noticed a new symptom yesterday morning.. so I decided to call TCI..I left a message. I recieved a phone call back at 5pm from the nurse. I explained that I now have a lump on my head..where I used to be able to feel a screw. It is mushy and it hurts. She said she would consult with the doctor and get back to me. SO this morning before physical therapy..I took a picture and emailed it to TCI. Its been a long day.... hopefully my lump is gone in the morning...


Debbie Loomis-Earles said...

So sorry your having a set back but it seems like there is always some kind of strange set back when we just start to make improvements. I hope your symptoms start to improve soon and you get some answers from TCI. Dr.B is always so good about emailing back!

Hope you have a pain free week end.


lace1070 said...

How's your head? Has the swelling gone down any? I can imaging your noggin probably is giving u a hard time with this cold front ~ me too ~ I will call u later this week to check in ~ hugs ~ Lace

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