Replies to This Discussion

ModeratorPermalink Reply by Ron, Kansas on June 5, 2011 at 8:01am

Welcome JD#2,

I can't speak about either of the DRs you mentioned.  

A couple of thoughts on seeking surgery after being told not to:  The technology is changing all the time.  We were told in 91 that surgery was not an option, but in 98, surgery was available.  Also, two DRs could examine you, one recommending no surgery, and one recommending surgery.  The positive of surgery is once done, the AVM is usually GONE.  Of course, the downside is surgery is the most risky usually.

The other big thing is it's not like having a sinus infection where the treatment is antibiotics--all AVMs are different in size, location, etc, so it is likely more common to hear differing opinions as to treatment.

I won't say "Skill", but experiences vary widely with the DRs.  A DR who has done few or no surgeries might be adement that surgery is not an option, but a DR who treats hundreds or thousands of AVMs by surgery, might say go for it.

Hope this helps.

Ron, KS

• ▶ Reply

Permalink Reply by JD#2 on June 8, 2011 at 9:15am

Thank you, Ron, for your reply a few days ago. I am seeking to understand this condition as much as possible and learning more and more that it is highly unpredictable and each case is different. On several other discussions I have read your comments which are common-sense, level-headed, and helpful. Thank you :)

• ▶ Reply

Permalink Reply by Melinda on June 8, 2011 at 10:00am

Hi JD!!!!

 

Welcome to the site, although I'm sad to see it be needed. Okay, so I'm treated by Dr. Haskal. I've also spoken to Dr. Yakes and so here's my situation and then you make your own decision. I'm of the firm belief that everyone is bias to a certain extent by their own experiences so take it for what it is.

 

I have a high output peripheral AVM that reaches from my pelvis down to my toes. I've had extensive surgeries since your son's age...which was when I was diagnosed after quite a lot of heartache believe you me.  Dr. Phil Guzzetta at Children's National Medical Center is who treated me, and you might want to contact him as he's closer to you and a valuable asset. Tell him I sent you!! Hehehe, I'd be excited to see how he is. He's a vascular surgeon who worked extensively on my AVM, but the biggest thing they said to me (back in the 80s) was that because I was growing, so was the AVM. So, surgery ended up not being the right thing for me, and at the time they said that amputation was probably not a good idea either.

 

Fast forward to now. I found Dr. Yakes while very knowledgeable somewhat for lack of a better way of saying it...condescending? I'm a PhD candidate, have been dealing with my AVM for over 25 years and the fact that you speak to me as a child, well...in my humble opinion it's insulting. He's very aggressive with his treatment, and while alcohol oblation works very well for some, he didn't even gander a thought of doing anything else with me. Alcohol is terribly destructive, especially in the human body, and so precision is a must.  While he's very precise in the interactions I've had with people, when you miss...it's terrible. Not to mention, the more aggressive the treatment, the more painful the recovery.

 

With that being said, there's also something very valuable in being close to home. I was treated extensively as a child, and was sent up to Boston Children's Medical Center for a follow up and it was terrible. I wasn't in a familiar place, there wasn't the appeal of going to the monuments after treatment, etc. etc. That's what did it for me as a kid, what can I say.  It made things much more nerveracking and frustrating at least for me. I took sometime being treated at Hopkins too, but then my doctor got sick. I couldn't take the frustration of canceled procedure after another.

 

My mom started working at University shortly after that and we ran into a Dr. Patrick Malloy who then treated me for close to 7 years. He was fantastic. He's now in the VA system, working on guys and gals coming back from the war with vascular abnormalities from trauma.  From there, I was stuck. I went back to Hopkins and the usual disappointment was there. My wound care doctor referred me to Dr. Yakes, but I couldn't get the incling out of my head that I didn't want to travel. That I shouldn't have to. That the doctors and nurses in the Maryland/DC area are some of the best in the nation, and that I should take advantage of that. So, I pursued more and more, and made a clinic appointment with Dr. Haskal. He's the editor in chief of the Journal of Vascular and Interventional Radiology, so he's on the cutting edge of research.  He basically said to me at that initial appointment a few important things:

1. Why didn't you come to me sooner.

2. I will be able to treat you, but when I get in over my head I will vocalize it and refer you to one of my colleagues that is more knowledgeable in the area (including Dr. Yakes).

3. We will do as many or as few of these procedures as you're comfortable with until you start feeling better completely.

4. You will never be cured. AVM's are treated in the extremities, they aren't cured. Especially with a case as extensive as yours is.

 

His vocal nature and distinct up front charisma is what sold me. He's quick to say he'll use alcohol when he deems it necessary, onyx, glue, or coils when he can't use anything somewhat more permanent in nature. He's not quick to take undue risk. It doesn't hurt that I'm a grad student at the Med Center as well so I'm comfortable there. You might want to explore Dr. Banovac at Georgetown as well though. He was on my short list of people that I wanted to see if things didn't work out at Maryland. There's also a Dr. Ignacio at GW Med that specializes in pediatric interventional work.

 

That's my story and I'm sticking to it. Hope it helps. Lemme know if you need anything else.

• ▶ Reply

Permalink Reply by pratibadha pratap singh on November 22, 2011 at 9:50am

HI ,I am 31 years old guy from Kathmandu,Nepal.My name is Pratibadha .I have learned that your is son is having AVM on his right knee .I am also suffering from Congenital Artery -venous Malformation (AVM) on my right knee.Same thing i have also suffered a lot .My problem is found very late around 2008 .I got my suffering from my Childhood .Due to lack of medical lag i cannot found my problem in child.I get to know that Congenital AVM is quite rare in the world only 1 % of world people suffers from Congenital Artery Venous Malformation .Due to rare type of Congenital Artery venous Malformation (CAVM) it is hard to get expert Dr in this field .So in my Context also i have really difficult to find the Dr also in Asia .I also get know that in USA also AVM expert Dr for Congenital type of vascular malformation hard to find there only few are there.
Surgery is not possible for this case because of bleeding complication , recurs if surgery is done also and high risk involving the loss limb ,if the surgical Intervention is Contemplated.

Only some therapy is needed to cure this problem for which it need high expert of multidisciplinary Dr.

One Dr recommended me the expert Dr in the world for my case which he provided a lot of things but i cannot get treatment in USA due to lack of medical support .

if u want we can talk in email also

were005@gmail.com

• ▶ Reply

Permalink Reply by SRose on May 13, 2012 at 5:53pm

I have a Left facial AVM and Dr. Yakes is the man for the job.His staff and his knowledge of these horrible things makes him the go to Dr .He was heaven sent as far as I'm concerened.Good luck!!!

• ▶ Reply

Permalink Reply by dancermom on May 14, 2012 at 7:44am

Hi, JD#2, though every AVM is different, some are more different than others. So, someone with a facial AVM is dealing with a very different situation from someone with a leg AVM. And, someone with a leg AVM that runs from hip to toes is dealing with a very different situation from someone with a small, focal AVM in the calf. So as you research this site, look for AVMs that are the most like your son's and pay the closest attention to those stories. If your son has had an arteriogram, you should have heard by now a fair bit of information about the size and location of his AVM. Knee and thigh sound like perhaps the AVM may not be small enough to make resection a possibility, though you should discuss this with the doctors. When the entire AVM cannot be removed, then treatment generally needs to be staged embolizations. Treatment done at frequent intervals (every 6-8 weeks) has a better chance at quieting the AVM than treatment done at longer intervals (every 6 - 12 months). Part of picking a doctor involves choosing someone you can get to frequently without total disruption to your lives (unless you can relocate), someone who is communicative enough that you can make informed decisions about your son's care,and someone who is responsive enough that you won't have to wait 2 months to be seen if your son has symptoms that need attention. You will want to understand the overall plan of treatment, not just what is happening at the current appointment. Can you get opinions from Haskel and Yakes? You won't really know what plans of treatment they have in mind for your son until you hear it from them. You can ask specifically about the benefits and risks of alcohol embolizations.

You can also visit the Vascular Birthmarks Foundation http://birthmark.org/node/55 and use the Ask a VBF expert feature on the left side of the page. Dr. Robert Rosen in NY is the designated expert for arms and leg AVMs. It's a free way to get another opinion.

We are rooting for your son and hoping he gets the best possible care. Keep asking questions. Best wishes!

• ▶ Reply

Permalink Reply by dancermom on May 14, 2012 at 10:40am

Hi, I just realized this was an older discussion. Can you update us, JD, on how your son's treatments are working out for him?

• ▶ Reply