At Last!

Hi everyone just a few quick questions to those who know more then what i do at the minute! We have had a huge lack of communication between all of our doctors resulting in a huge kick up the arse to get them moving again! This morning we had a phone call (my partner took the call!) from his consultant in which he briefly said that he removed most of the AVM but there is still a small clump left behind which doesnt have a draining vein and is at a very small risk of bleeding again but there is a chance it will bleed , he wants to wait until Jacob is nearly one and will perform an angio and embo at the same time. My questions are what does he mean it doesnt have a draining vein? is this a good sign? has anyone else had a craniotomy then embo? did this completely kill off the AVM? In a baby are they put under general anesthetic for this procedure , will there go to intensive care afterwards? His consultant is going on holiday today for 2 weeks now so we will have to wait til he gets back to ask further questions! Many thanks for you help in advance :)

And now my partner is not sure if he said there was no draining vein! wish i took the phone call now!

Such a little guy to have to go through this...I'm sorry. I can't really answer your question about the draining vein, although it does sound like a good thing. I did have a series of embos followed by a crani a few days later. In my case the AVM was completely removed. More than likely Jacob will be under general anesthesia and be sent to intensive care afterwards. It is a very invasive procedure. I wish you the very best with Jacob's surgery. Please let us know how he is doing.

Mom, it is so difficult dealing with any information the doctor's tell us..I think what I would do is call your doctor's office, even though he's on vacation, and asking if SOMEONE can talk to you and explain what was said. I pray that someone can help you so you don't have to wait for 2 weeks. Try to stay strong Mom, you and Jacob will be in my prayers. Please let us know how sweet Jacob is doing!

Hi!!! When Gavin had his angio with embolization at 4 months he was completely under when they did the procedure. He will have a breathing tube during and after the procedure. Gavin had 3 main medications after the procedure; sedative, paralytic and pain medication. to do the angio they go in thru the femoral artery in the groin because this artery supplies blood flow to the lower extremity they do not want the baby to move for 6 hours after surgery (in an adult or older child they wouldnt paralyze them because they can keep their leg striaght on their own). Gavin went to the pediatric intensive care unit afterwards. When the 6 hours of not moving was over they turned off his medications. When he was awake they took out the breathing tube and within 3 hours he was eating. Later that afternoon he was moved to a general pediatric floor. he had no complications with his embolization. They were also able to occlude 95% of his AVM at that time.

About the draining vein please quote me because I am just recalling what our doctor told us. So the AVM has feeding veins and draining veins. The feeding veins supply the blood to the AVm and the draining veins shunt the blood from the AVM to the body. From our understanding any feeding or draining veins should be taken care of because children are more at risk for their AVm to regrow if there are any veins (feeders/draining) left.

I am glad you are finding some sort of answers. I would call or go into the office and ask them to sit with you and fully explain everything (face to face) would be best. Go in with a list of questions and write down the answers (i dont know how many questions i asked and then didnt write down the answer and by the time i got home I had no idea i was so overwhelmed).

Hope this helps! You can always ask me anything, sadly we are going through many of the same things. I am easier to get ahold of on facebook. Cant wait to hear from you friend!

Thanks everyone :) i have a huge list of questions , the waiting time in the UK is ridiculous but i have to keep telling myself that if he was in danger then they would have us in straight away! Its just so draining as its all i think about and there isnt any support groups in the uk so you are left to deal with it by your self! xx