Wow, I am so impressed by all the people who "breeze through" these embos. I cannot make that claim! Mine lasted six hours (last Friday at 9 am). Dr. Alvarez glued the dural arteries of the "malformation" from at least three different branches. This effectively shut down the fistula that drained into my cerebral vein. However, there are still some cerebral arteries that also feed into the fistula. So, the problem is largely remediated, but she wants me back in two months for another angio, during which I will be put to sleep in case she wants to use more glue. There is a chance that the fistula will have closed itself. So, the hole is substantially closed off already. Also, I used to be able to feel the arterial pulse on the base of my skull in the back, and I can no longer take my pulse back there, so that is good!
But recovery was a bear. Those 24 hours in Neurological ICU were not fun. Maybe I'm a baby, but that was the worst headache I've had in a while. I think there was arterial swelling and dural swelling that came together to cause a lot of pain. Morphine was useless, so they switched to something else that knocked me out for an hour at a time, but they could only give me every two hours. So, they gave me Oxycodone in between. Long night!
They kept me all day Saturday and Saturday night and all day Sunday and Sunday night and I got to come home yesterday. Been resting pretty well. Still planning on going to Milan on Saturday, but will upgrade to business class.
The care at UNC-Chapel Hill Medical Center was outstanding. I can't even begin to tell you. I was so well taken care of.
Thanks to all my friends who prayed and wrote to me. You are all so wonderful!
John, glad it went well or as well as can be expected. Those headaches are indeed quite difficult to manage. Glad UNC took good care of you.
Hello John, glad that everyting went as well as it could. Luckily for me, I don’t have many headaches, but I feel for you. I’m also having an angiogram in November just to make sure there are no more anurisms, so all the best for your angio. Take care, Lesley.
Hey John! Glad it went well and sorry for setting you up to think it’d be easy! I know I’m sometimes a culprit in that. It’s great when people breeze through but I don’t think you are at all a baby or out of the ordinary. I do think it sucks in general and some pain levels are def worse than others. Many people have a hard time.
I’m sure their is some magic recipe for # of hours under, amt of embolic agent used, kind of embolic agent used, amt of blood flow shut down, etc that makes it easier or harder. I’m not sure what the perfect ingredients are but I suppose it doesn’t matter as none of us can choose the recipe.
I’m glad you had great care as that really can make all the difference. I’m very glad to hear that you made it through those tough days and that you are feeling well enough to still take your trip.
Hang in there, don’t over do it, and recognize that you are absolutely a tough guy for going through all of this. And enjoy that business class! I think you totally deserve it!
HI, JOHN GLAD U ARE STARTIN TO FEEL BETTER, I AM ONE OF THOSE ONE’S THAT DIDNT HAVE ANY TROUBLE WITH THE FIRST EMBO. BUT THE MORPHINE DIDNT HELP ME EITHER, I WILL HAVE TO ASKED WHAT IT IS THEY GAVE ME AND LET U KNOW BECAUSE IT DOES WORK GOOD ON THE PAIN, THEY GAVE IT TO ME BEFORE THE PAIN STARTED SO I DIDNT HAVE ANY, THEY KNEW FROM WHEN I WAS IN BEFORE THAT THE MORPHINE WASNT STRONG ENOUGH FOR MY PAIN. BEFORE YOU HAVE TO GO BACK I HOPE TO HAVE THAT INFOR. FOR U. AS FOR NOW U REST AND GET WELL WILL KEEP YOU IN MY PRAY’S UNTILL I GET BACK
Glad you are doing better! Everyone seems to have a different experience with the embo. I’m sure it has to do with the specific makeup of the malformation. Lindsey didn’t have any headache from the embo, but then she didn’t from the craniotomy either. But look at it this way…if you knew how bad it was going to be, you would have wasted a lot of time and energy dreading it, right? Praying for good results from the next angio, and a safe and uneventful trip to Milan!
Glad you have recovered from your first embo and hope the next one goes better.
That’s such good news to hear, John!
As far as pain and being a baby: Everyone has different pain levels, so don’t worry/don’t sweat it. (Besides, that’s why they have the ‘highly effective’ medicines to counter the pain.) In my opinion, anyone whom has their brain ‘played around with’ has earned the right & priviledge to be babied and pampered. The mere fact that you have been proactive (researched it for the information and sought treatment) with your AVF makes you a BRAVE person.
Is your wife and kids getting to go to Milan with you? (Two weeks in Milan, Italy = wow. Btw, I am still sooooooooooo envious… LOL. TRUE, authentic Italian food is my all time favorite. I’ve always wanted to ‘study abroad’ there for culinary. The different regions of Italy has different ‘flavors’ of food, as the food is influenced by it’s surroundings - product and people wise.) Anyway, I hope you get to thoroughly enjoy your time there! Have a WONDERFUL trip and don’t overdo it!
Thanks, everyone, for your comments. I am recovering OK. I wasn’t able to upgrade, but still plan to fly to Saronno, Italy, tomorrow. One doctor said “no problem”, the other said, “I wouldn’t”, but I really need to go.
Just reading your post. Glad to hear all went well. I will be following your progress & wish you the very best. Enjoy your trip. Cheers from Australia
Congrats on your first successful “embo”. (hopefully the last too).
And about your scheduled flight,…I myself would err on the side of caution, if at all possible. If not,…John,…please be careful.
Just thinking about you my friend.
Thanks, William. I’m safely in Saronno. I would rather not have made the trip, but I will take it easy while I’m here. Thanks for your concern. I promise to be careful!
I have had 2 sons and 6 shoulder surgeries and never in my life have I been as tired as I was after my first Embolization. I had my PCA embolized. I was awake for part of it so the dr could do super selective angiogram as well as preliminary testing to make sure I was not going to have vision loss. After we found everything to be ok they put me to sleep for the actual embolization part. I spent 1 night in the ICU and then one more night on the Neuro floor. I actually was in very little pain after the procedure. I have experienced sharp pains and pressure in the back of my head but am no longer having the migraines that I was which lead to me finding out that I had an AVM. Please stay strong and know there are others out there that are fighting along with you. Please keep me posted on your progress. I was suppsoed to go back in today for my second embolization. This one I wasnt supposed to be put to sleep but the dr found “peel” feeders that needed to be emobolized first so I needed to be put to sleep. The appropriate staff was not available so I will be heading back in November 3rd. I need at least 4 more embolizations. Stay strong