About Me

My photo
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...

Friday, May 1, 2009

Warm Weather is Here!


Im loving the warm weather! Its a little dreary..but its still warm. Better than snow! Im really looking forward to this summer. Im focusing on getting things done around the house..and just tying up loose ends.
It seems this year..we have had alot of legal stuff to deal with. Paperwork to find..file..fax. This drives me nuts! But at least I feel like Im getting things out of the way.
Ive had a few doctors appointments...getting some tests out of the way that I have to have done for preop approvals. I started physical therapy for my knee. Dr Rodeo from Hospital for Special Surgery looked at my knee..he says I have instability and recommends physical therapy.
Im scheduled for shoulder June 5th. Exactly 1 year from my Anterior Cervical Discectomy w/Fusion. Happy Anniversary! The surgical coordinator told me that they would keep me for at least 48 hours because of the fiber optic intubation and the recent daignoses of sleep apnea. She also said Iam a complex case. Just my luck. I was hoping to ride home with my nerve block still in full force. So Im going to shoot for a Sunday departure. This way the traffic wont be as bad. The FDR is horrendous...bumpy & always backed up.
I feel like I have been on a marathon lately. Just really busy. I did get to meet with my friend Lisa last Saturday. We met in Danbury CT..at the mall. I had a great time. We talk almost everyday. I dont get to see her often. We met at TCI..we were both there for our first consult. So we have traveled this journey together.
The CT chiari group is planning a get together the end of May. We should have a good turn out. It would be nice to put some faces to the emails. The group has really grown. Its amazing to see how many people have joined. The more people we have..the bigger voice we have.

No comments:

Chiari Interview