My 8 yo son has recently been diagnosed with 3 AVM's. All 3 are located in his left arm, one is in the humerus bone. He is scheduled to have an embolization, they are also going to close his PFO valve in his heart on May 1. I was wanting to know what we should look for after the embolization procedure? Also as a result of a cardiologist not performing simple tests a year ago, we have to also deal with a heart condition that is deteriorating fast.
You may wish to look up Claire: she has an arm avm, and was scheduled for surgery to close her pfo valve, but it was discovered during angiogram that the pfo was not open after all:
http://www.avmsurvivors.org/group/extremityavms/forum/topics/large-...
Sometimes, avm shunting can cause results that look like a pfo problem, I guess?
Where are you scheduled to have the embolization?
He is scheduled at Lurie Children's Hospital in Chicago, Illinois.
McKay McKinnon, who works at your child's hospital, has been recommended in the past by a couple of our members: http://www.avmsurvivors.org/profile/CraigNiemeyer and http://www.avmsurvivors.org/profile/Christy
What type of embolization will be used? NBCA? alcohol? sodium tetradecyl?
Also, I see that Arun Gosain was the director of the Vascular Anomalies Clinic at Cleveland before coming to Lurie. That is good -- that means that Lurie is serious about treating vascular anomalies.
If you tell us the specifics of the type of embolization planned, we can tell you better what to expect.
I have only briefly discussed the embo with the IR. It is my understanding that they will use ETOH if that is not successful then he said they would use an "inert compound" Onyx, he described it as a putty type composition. That is why I am wanting to gather as much info as possible to be fully informed when we meet with them prior to surgery.
The team that is going to do the procedure is
Dr. Ali Shaibani
Dr. Donaldson
Dr. Stanley Kimm
Good, ETOH is ethanol. It's useful to know that Lurie is using that. Ask how many intraosseous avms your team has treated. There will be significant swelling after the procedure. If ethanol is used near the skin, there may be blistering or other tissue damage.
If you check the members of the Extremity AVMs group, and look for those with arm avms who have been to Yakes, they will all have had ethanol treatments and can tell you about the process. Lynsey Eggers, Dubai Gator, and Carters mom come to mind; you can type their names in the search box to connect with them.
This will in all likelihood not be a single treatment but most likely a series of treatments spaced two or three months apart. If they tell you that follow-up will be in six months or a year, that is too long, and a sign to look elsewhere.
Still thinking here... I can't recall anyone here having an onyx embo for an arm avm. You may wish to open a discussion in the Extremities group to ask if anyone has. Onyx becomes an "artifact" that makes it more difficult to see what is going on in future scans. I suggest getting more information about onyx in extremity avms before agreeing to onyx.
That is exactly what they said, that it would take aprox 2-4 treatments spaced 3 moths apart. We feel really good about the team and the care that they have provided so far. They have been so extremely helpful after the diagnosis. They have taken the lead with the heart complications as well. My wife took our son to a Pediatric Cardiologist in Springfield Il. last year for an evaluation. He told her that he had an innocent murmur and that she was an "over protective mother", Last week when he was sent back to do a comparison Evaluation, the cardiologist could not do it. Because he had done no tests other than an EKG. He then proceeded to tell us that our son has congestive heart failure as a result of the stress that the AVM's have caused. We got a second opinion from Lurie and they confirmed his new findings and have completed a "VERY THOROUGH CARDIAC EVALUATION!!!!" He has to have the PFO valve closed prior to the Embolization
It sounds like you are in a good place, and I am very glad to know there is a good place for pediatric peripheral AVMs in Chicago. I'm sorry your son is already having heart issues from the avm; I have heard of this with a few other kids here, though most often members reach middle age before reaching the point of heart failure. I imagine the doctors have advised you not to let your son exert himself too much until he has been treated?
We are rooting for your son. Please keep us updated as he is treated, as it will be very helpful to other families.
Yes they have stopped all physical activities, (jujitsu, Gym class etc..) If someone would have recognized the AVM's earlier, we would not be having the issues we are having. He has been seen for his "Birth Mark " by a pediatric dermatologist sine 2 years old. We just got the AVM diagnosis March 20 of this year. :(
I did a search for you…http://www.avmsurvivors.org/main/search/search?q=Onyx
The search box is located on the upper right hand corner of the page.
Welcome!
Sadly, this is typical for AVM patients. But 8 is still young -- some are adults before they discover what is really going on.