Cinco de mayo

Hi, Sorry for being away for so long. (Short story, in the middle of all this, we moved and just today got the home internet connected - 3 weeks without, almost killed us all!)

We did get a second opinion with a doctor closer to home. She wants to have the angiogram two weeks prior to the surgery. Doesn't know if they can do a embolization - said they will find out when the angio is done & if they can do it they will do it while there. Then 2 weeks later do the surgery. She was more direct (in a nice way) about the possible complications because of the location of the spaghetti knot (that's what we are calling his AVM now). The AVM is on the surface of the brain, with one vein going into the brain. Correcting this one vein may permanently affect his inferior vision on the left. Said the only time he would notice and really be affected by it is if he were to go down spiral stairs to the left.

We sat on both opinions for a week; thinking them over.

Two weeks ago, we decided to move forward with the doctor closer to home - still don't have a surgery date. Just today I got the angio scheduled for May 24. The surgery should be 2 weeks after.

Last week the doctor called me after consulting with the angio doctor. Then the scheduler called to set up a consult. I asked 'haven't the doctors consulted with each other?' It took a week for them to agree that they talked about it and agreed that it had to be done. Moving on, we are a go for the angio on May 24.


My son is holding together well. His two cents - no one does anything to him without putting him to sleep and do not shave more of his hair than absolutely necessary. He heard that anesthesia isn’t necessary for an angio - he wants to be knocked out. Can't tell me why, just doesn't want to be awake for it. My mother and a few others have offered to shave their heads in support of him. He thinks they are nuts.

Good news; thanks to all the news lately about Bret Michaels, the teen beauty queen in Hawaii and the drummer in Canada... He is beginning to realize this is serious. He finally agrees that we need to get it taken care of now - later is not an option. Just today on Young & the Restless (yes, a silly soap I watch) one of the characters hemorrhage. He asked if it was a conspiracy. I had to point out that this show was taped two months in advance. But anyway, he is beginning to see the importance of getting the help he needs now.

Now that we are back on line I should be more responsive. :)

Half the battle is making those tough decisions! It gets a little easier once you have a plan of action, and everything is set in motion. They should know a lot more once they do the angio. Sometimes their approach changes once they get that information, so don’t let it throw you if things change. We changed courses after the angio, and then after the second opinions.
Lindsey was totally asleep for her first angio, and her embolization, but was only sedated for her final angio. She didn’t notice a difference between the two, and appreciated not having a sore throat after the sedation, that she had from the general anesthesia. As for her hair, her surgeon only shaved a very small strip. I was amazed at how little he needed to shave. I think that may have some to do with location, but should put your son at ease. For a girl, that was a major concern, but ended up to be really a non-issue.

Good luck with everything. Our prayers are with you, and please keep us posted!

Susan