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.