About Me

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

Me Brain

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...

Tuesday, October 7, 2008

IM HOME....


Well I made it... it has been a rough week. But all in all..Iam on my road to recovery. This is my new do..thanks to Dr Remy at North Shore. I did ask for a little of the back and to please leave a flap of hair for a comb over. Not quit what I asked for, but Im not about to complain. I want to say THANK YOU to everyones kind words of support and prayers. They are always welcome. I had a Craniocervical Fusion from c5 to occiput. with a minnie posterior fossa decompresion. That is what I was told, so of course Iam anxious to read the surgical report. I met some new friends while I was in there, April from TX, she had TC surgery. Rose from our CT group was also in the day after me for PFD. My room mate, who is not a chiarian, Sally, was such a wonderful women. I already miss our talks we had before bed. April, Sally and I had a great time the last few days of my stay. I believe I have made more life long friends.Its always nice to have a big refreshing glass of leamonade after being handed a pile of sour lemons....

3 comments:

Erika said...

Welcome Home! It is a real cool "Do" Take it easy and you will be back to yourself in no time!

Jodie said...

Glad your back, and I hope you are doing well ! Make sure you take it easy and don't do anything you shouldn't do :-).

Keesha said...

OMG I just saw your comment at my crocheting blog! I am SO sorry! I had to take my CM blog offline for a bit and shut down my 13 year old email address because someone wouldn't leave me alone (unfortunately can't say on here who b/c it's someone at the ASAP message board). I hope you are doing as well as possible! hugs,
Keesha

Chiari Interview