Dear courageous friends: is there anyone out there who has managed to survive years despite having significant cortical venous drainage? My husband who had successful surgery in May with Dr. Spetzler, now has significant CVD returned. We knew something was wrong when he started to hear his pulse in his ear again... that had disappeared after the surgery in May. He had an angiogram at Hopkins yesterday where we were told this news. They are painting a pretty dismal picture and we're just trying to find any puddles of hope that we can latch on to..... we welcome your wisdom.
On another note, should this be headed down a path we'd like not to go, any wise words to help us prepare for possible negative outcomes?
Great thanks and wishing all of us the blessings of the gifts we share today.......
As far as encouraging words, I've watched my wife go into brain surgery about 10 times (counting embolizations) and my son twice to stop seizures. It is not a fun journey, but for us, everything came out well. I wish the same for you!
I would encourage you to cherish every hour of every day. Forget about cleaning the house or doing laundry (hire someone if you can, or just ignore it). As much as you can, go and do things that are fun. If you enjoy reading, read all the encouraging books you can find. Be a joy to those around you, in any way that you can.
Give your friends and family that want to help you specific things they can do. They are hurting too, and any tasks they can lift from you helps YOU and THEM as well.
Give yourself permission not to hang around negative people (even if they are family). Turn off the news. We joke with our kids that we bought a new tv to watch Gun Smoke in hi def!
Laugh everyday, or every hour.
I am reminded of a saying I read in one of the Chicken Soup of the Soul books: "If you found out you only had an hour to live, who would you call, what would you say, ............ and what are you waiting for???????????????" Not meaning this as a downer thought, just a call to action.
Make a bucket list and start. Not suggesting round the world trips. Heck it might be 'go to dinner and a movie'.
I hope this helps and I wish you the best, Ron, KS
Ron: those are very wise words and I appreciate the gift you gave in sharing them.... This is a scary roller coaster ride, yet the light in the tunnel is exactly what you describe... the opportunity to really prioritize, hold and know what's important and cherish each moment.
Bless you for your wisdom and wishing you and your family all God's blessings in the Newe Year!