VM in my daughter's left foot - Dr. Yakes?

Our daughter, who will be 8 in a couple of weeks, has an AVM in her left foot. She first started limping when she was only 15 months old. The past 6 1/2 years have been marked by periods of pain, constant limping, numerous orthopedists and other specialists in attempts to diagnose her. After multiple MRIs, CTs, x-rays, and 3 surgeries (done by 2 different surgeons) ... the last diagnosis was AVM in Jan. of 2010. The last surgery was in Jan. 2010 ... she's had an MRI in Aug and another one in Dec. 2010. Our orthopedist says that there is still something there, which is not surprising since she has had a lot of pain. She wakes up in the middle of the night and crawls into our bedroom crying because of the pain. She walks on the heel of her foot and never walks on her foot entirely.
We are in the process of yet another dr. search, since with the last diagnosis we decided we should be searching for a dr. that specializes in AVMs of the extremities. I have noted that lots of people have seen Dr. Yakes and I spoke with a nurse yesterday who said that my daughter actually has a VM in her foot and suggests treatment with Dr. Yakes (we sent all of the files and MRIs for him to review). It has been a long road of multiple diagnosises and surgical treatments. We have concerns about the embolization that Dr. Yakes performs ... yet, we see no other options, since it appears to be affecting the bones in her foot as well.
Any advice, prayers, or thoughts are always welcome!

Hi Lori. I did a search on Dr. Yakes for you on here...

http://www.avmsurvivors.org/main/search/search?q=dr.+yakes

I did a search on here for you...

http://www.avmsurvivors.org/main/search/search?q=dr.+yakes

Hi Lori,

I would absolutely suggest getting in touch with Pam- Carter's mom http://www.avmsurvivors.org/profile/Pamelatrudeau?xg_source=profiles_memberList

Also- if you do an advanced search under the member tab you can find a list of Yakes patients and even drill down to "foot" or other key words.

Carter is 11 (I think) and from reading your note above, I think it's possible that you and Pam will find many similarities between experiences. Carter was treated by Yakes, and I've had over 30 embo's with him for my facial AVM. Carter and I were lucky enough to be in for treatment on the same day last year and he is an awesome kid.

And yes, people have "concerns" about Yakes approach. ANd many doctors will poo-poo him simply from a political agenda and without a patients best interest in mind. And that is something that I find very hard to swallow. My 2 cents- it is a more "aggressive" treatment than most doctors offer. And he has great results in most of his patients. Are there some who don't get the absolute best outcome? Sure. Are there risks that do actually turn into reality for some people? Absolutely. And those are the things you have to weigh. There are risks with any doctor and any treatment. But Yakes does this day in and day out everyday. He IS an expert. Many doctors only treat AVM's or VM's occasionally. Yakes is dedicated to them. I trust him 100% and have seen a HUGE improvement in the size of my AVM, or the amt of blood flow dedicated to it, to the ulcers and pain I had because of it. I am a success story if not still in the works. And I've had small hiccups with my treatment. I currently have big ugly scabs on my lip and chin from blisters caused by my last embo. And I've lost some feeling around my chin and cheek. But seriously, I'll take that small and rare side effect based on the benefit I ultimately enjoy. The "cost" of those little items is well worth the prize. And of course I'll be back in Denver in about 2 weeks for my next embo. Meeting up with another leg guy Stu and planning the next fun thing I will do with all of the staff whom I totally love.

My advice is to do exactly what you are doing. Gather info, get opinions and options, seek info on others experiences both good and bad. And be as biased as you possibly can considering the sources of this info and considering you are a mom who is emotionally involved in the well being of your daughter! There is no easy answer, but I sincerely believe that what you are doing now will provide you with the BEST inputs in order to asses and make a decision.

I wish you the absolute best in this and am always available for questions!

I can't help you with this but I will definitely pray that you can find some treatment and hope for your daughter. Extremity AVM's are just so difficult to treat. I, personally, am a huge fan of Dr Yakes and his alcohol treatments as a cure for extremity AVM's - this opinion after the hundreds of hours of reading i have done on this site. He is such a devoted doctor and I am so thankful he can help patients with extremity AVM's. I'm sure you will hear from Shalon....:)

Let us know what Dr Yakes says about your daughter. My thoughts are with you.

Hello Lori, I am so sorry that your daughter is having this problem. I’m a “brainer”, so I cannot help you I’m afraid, though I and can, and will, keep you and your daughter in my thoughts and prayers. All the very best Lori, Luv, Lesley.

Thanks all for your thoughts and help! I will keep you posted on the journey!

Blessings,

Lori