Wednesday, November 5, 2008

More Information about Jake

I got a phone call today from Jake's doctor. He went over the results of Jake's images that were taken on Friday:

It turns out that Jake doesn't have an hemangioma...he has an Arterial Vascular Malformation - or AVM for short. He explained that an AVM is basically a "miswiring" of Jake's arteries and veins. He compared the arterial/vascular system to a tree: a tree has a trunk (arteries) and branches (veins) and it's anatomy gets smaller and smaller to the leaves (capillaries). Jake's AVM is like having 2 trunks put together - and it's caused a high blood flow situation (which is the "whooshing" he heard when he listened to the birthmark). The blood doesn't have the correct route to take (going to the branches and leaves). One great thing he said is that the AVM is not attached to Jake's skull at all, it's just at the scalp - so that makes treatment a bit easier.

He is going to have us meet with an Intervential Radiologist, and Jake will undergo an angiogram. He said this will enable them to get a more specific picture of which vessels are not formed correctly. He said the MRA showed all of the vessels, but the angiogram will be much more specific in it's imaging. The angiogram will consist of having a catheter inserted (most likely into his thigh) and floated up to his birthmark to take images of the vessels. During that procedure, he'll also undergo an embolization. That will consist of a slightly larger catheter being inserted, but they will be able to steer this catheter and have it go to where they need it to go. He will have a coil inserted into the vessels that are malformed, and this will cause a clot that will shut down the blood flow to the birthmark. The doctor said that Jake should start to have some shrinkage of his birthmark following this procedure, but it won't go away completely. After this is done, then we can start to look at getting the birthmark removed - which will be much safer after the embolization is successful.

On a "not fun to hear" note...the doctor did inform me that if Jake were to have a puncture wound to the birthmark, he'd run the risk of bleeding to death. I almost had to laugh at how the doctor told me this...he prefaced it with "Not to freak you out, but...." freaked me out a little. He said that if Jake were to sustain a wound to that area, to put firm pressure on it - which is what we've always done when it bleeds - good to know that we've been doing the right thing! Michael joked that since we now know the risks - we should tie a pillow around Jake's head... :)

The doctor has already started the process of scheduling Jake's angiogram and embolization, and we should be getting a letter in the mail in the next 2 weeks letting us know when that is. He said that he put us on a "first available" basis, but if we can't make it at the time listed, then we can reschedule. Thankfully, I work for wonderful people, who told me not to worry about scheduling, so we'll go at the first available time they give us.

I did a little research online before posting this - hoping to find a resource that would help explain this process a bit more. (Jake's doctor did a wonderful job explaining things to me - he spent 20 minutes on the phone going through everything with me. However, it's hard to remember EVERYTHING that was said, so I turned to the wonderful internet to beef up my knowledge) I found one site, that really does a good job of laying out the whole thing. However, it explains AVM's found on the brain. Jake's is on the outside of his skull (thankfully) so his isn't going to be quite as drastic as they describe on this site (no seizures or headaches). It also explains the embolization therapy as well. Take a look, if you'd like: Like I said, Jake's isn't as severe as what's described here, but it's a good "general knowledge" resource for his AVM.

Please keep praying!


Elan said...

Yeah, I would be freaked out too! That is not easy news to hear. You did a great job explaining it. I can only imagine you listening to the doctor and trying to understand and digest everything he said.

Had you known all this when Jake was little, you probably would have tied a pillow around his head and not let him do anything!

We continue to pray for you.

Gary said...

Interesting to receive your e-mail this morning. While I was shaving I was praying for Jake and wondering what his present status was. I logged in and there was the answer to my wondering; I read all the information about AVMs. You did a good job of explaining it and the procedure for treating it. We will continue to pray for protection for Jake and complete healing for him.