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...

Sunday, November 15, 2009

Fall is Here

Where did this year go? How does everyday feel like S-L-O-W motion and weeks..months..go by so fast. What have I done this year? Well. Im not really sure. I did go to the Chiari Walk Across America in Albany NY in September. Which was great. Its so nice to see so many people make it a priority to bring awareness to Chiari.

My health this year..has been up & down. I was officially diagnosed with POTS or Postural Orthostatic Tachycaria Syndrome in August. By a fantastic doctor in Manhattan. Dr Weimer at Columbia Neurological Institute. He specializes in Dysautonomia. I was prescibed mestinon..on a "as needed" basis. It makes everything crisp & clear when I have what I call "episodes".

I was also very fortunate to be referred to a cardiologist that specializes in people with connective tissue disorders. He is at NY Presbyterian Hospital. I was diagnosed with an Enlarged Ascending Aorta. I go back in December for a follow up. To find out if we have to add medication as a preventative. It is 3.6 cm. I would need surgery if it reaches 4.5cm. That is a smaller size for an elective surgery because of the EDS. I will deal with that if the time comes.

Iam just about finished with physical therapy for my shoulder. I had a set back with the recovery of the stabilization surgery. My shoulder started to pop with movement. That means Iam experiencing some instability. Its not painful.. but Iam back to isometrics for pt. Iam following up with Dr Rodeo in December.

I made a recent visit to see dr Verma at The Chiari Institute. I have developed a lump/knot on the back of my head. It sits at the base of my skull.. just off center to the right. I had 3 mri's..2 ct's and 8 xrays. All to tell me..that my hardware looks good. That he thinks it is just the way it is fusing. Although..he was concerned about my c6-c7 disc. Its not looking so great. I knew this in March when I saw Dr Kula. But Dr Verma is concerned about the numbness I get in my right arm and the grasping issue's I have with both hands. So It looks like I will need an emg to see what is going on. He did say that he would be willing to try disc replacement instead of fusing another level. Hopefully preserving what mobility I have.

Overall..Iam doing good. Feeling a little down about the Holiday's. I ususally love Thanksgiving & Christmas. Not really feeling it this year. Although I have alot to be thankful for.

Last month I had to make an emergency trip to Florida. My Dad had emergency open heart sugery. He had his aortic valve replaced. He is doing great. While in Florida my husband was told he would need a Cardiac Catherization to possibly confirm and treat a suspected blockage in the right lower coronary artery. That artery is on the heart. My husband didnt realize that...but I did. To make a long story short..all is well. They found that he has sort of..a defect in the dynamics of the coronary arteries..that cover his heart. So no stints..no blockages.

Iam looking forward to the "New" year. Hoping it brings new positive experiences and friends along the way.

1 comment:

ronsgatorbait@yahoo.com said...

nonHi I am writing for my husband Ronnie, He was dx with Syringomyelia 6/10, He has 2 "Syrinx" located in T & C spine area and DDD in lower back. These are the only known at this time. Ronnie's hasnt had any scans since 2010. No medical coverage. His symtoms began 4yrs ago. Tonight we found a knot on the back of his skull also. Any help or contact would be sooo appriciated. feel free to email us at ronsgatorbait@yahoo.com
Thank You for sharing your story!!! My husbahd is finally reaching out..

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