So worried

I am so worried about my child. His Right side of the heart is overloaded with volume (blood). I am worried this is because of the AVM. Anybody with the same problem? He got Mitral Valve Regurgitation on the Ecocardiogram and chest pain. He had a hemangioma on his forehead. He had laser surgery 3 years ago, seems everything started after that. He had an MRI in March and they are suspecting Venous Malformation, what is nothing, but they think there is a communication between the malformed vein and the A1 segment of the Anterior Cerebral Artery.
I seen the large vein on the MRI. The neurologist showed us the picture. His exam was fast and said nothing. Anybody else got heart problems due to an AVM? We did not see a cardiologist, yet. Next week we are going to see a neurosurgeon at Toronto Western. Will they give us a cardiologist and a neurologist at the AVM Clinic?

There are 2 sub-groups here…
Parents of AVM
Canadianavmsurvivors
Go to the main page…scroll down and look on the lower right hand side.

Hi again:) You will have one “lead” physician on your team and they may consult other physicians like the cardiologist. This will happen much more quickly than if it was being arranged through your family doctor as an out patient. They will definitely look into everything for you, but it might be nice to just get some clarification at the end of your meeting. Just ask who will be the main go-to physician who will be arranging follow up with other doctors and who will be co-ordinating your care. This will happen in many steps which can be a bit frustrating, but just hang in there. You may find it helpful to start “keeping notes” like having a book that you write various diagnoses and dates in so that you have that information on hand should you ever meet with a new doctor who doesn’t have all the information organized concisely. Many parents I have known have done this and it can be helpful if done right:)

Take care,
V

Thank you so much, this will be very helpful for Thursday. I started a notebook I will keep writing in it.

Today is a better day for us. Thanks again and take care :)

I have had weird things that are heart-related, but haven’t had them checked out, I don’t really want to deal with other stuff on top of the AVM and ignorance is bliss!! In the weeks and months before my big headache and they found the AVM, I had been having racing heart symptoms where I thought I was going to faint, but they have kind of subsided now that the AVM is removed. I think maybe the heart has to pump a little harder to get the blood through the AVM or at least that is what I think is a logical explanation. So that is an increased stress that the heart really wasn’t designed to handle.

Hello! I say that you had responded to my post about drainage veins on face so I was reading here and saw that your son also has overoad of bloodflow to the heart. Ashtod does too. At age 3, his heart was bigger than most male adults. Totally experimental, but they placed him on a low does of propranolol and his heart continued to slowly shrink over the years. It is now within normal limits for his age (6). Sounds like our sons have some similar issues. How old is your son? Could you possibly post some or a pic of the veins on his face? I am really curious how much they are like my sons (can you see them in his picture). apparently, it is rare to have such large drainage veins like he has. Prayers to your son and family!

Hi Betsy, My son is older, he is in his twenties. He has the vein on his forehead, not showing to much anymore, because of the laser surgery. When I find an earlier picture I will send it to you.

The cardiologist will repeat his ECHOCardiogram, in case he will need medication I will tell them about your experience with Propranolol. We will see a good neurosurgeon on Wednesday. I will update you than. Thank you for the prayers. I am sending you positive thoughts and the best to you and your little one.

Dear Ontario Mom…if you dont know already, park at the McDonalds Parking Lot across the street, they are only THREE DOLLARS ALL DAY or you could pay as much as $40.00 a day at the hospital, I WAS DUMB…xoxBINKYxox

Thank you so much. I was dumb too…