I have been following this site for a bit now having been diagnosed with ES several months ago. The incredible heroism I have read about by so many is amazing and I am grateful for the support of this platform. Long suffering with few answers, pain and frustration can lead to a weird backwards hope for something to turn up “positive” in all of the testing and imaging we endure.
I have joined the ranks in being out of this world grateful for a very “positive” venogram last week, 75% internal jugular vein stenosis and significant pressure gradient difference at C2 related to ES … “THANK GOD!!!” was my reaction to the vascular surgeon and nurse who replied “you are not crazy, this is the real deal”. Oddly we hope to find something terrible which in turn gives us something tangible to work with and offers us hope for beautiful and better things to come. I look forward to a styloidectomy from the skull base and internal jugular graft or bypass in the next few months knowing it will be a rough journey but will have a happy ending.
No one said life would be easy but every moment is a choice and that is a beautiful gift.
I choose to be grateful.
Thank you to everyone sharing, caring and loving on this site.