AVM of Right Foot

My 11 year old son was originally diagnosed at birth with a hemangioma on the bottom of his right foot. He had no special medical treatment and has been very active. No problems. Last year he got a stress fracture in his right big toe. The orthopedic doctor said that if we wanted to know more about his condition we could go the the Malformation Clinic at Children's Hosp. in Cincinnati. (We live in Cincy). After an MRI, the clinic diagnosed my son with an arteriovenus malformation. They started talking about potential heart damage and the only way to truely cure this would be amputation of part of his foot. I was totally shocked. My son had an echocardiogram and his heart is fine and his AVM is not putting stress on his heart. It is confined to just his foot. After an angiogram, they confirmed his diagnosis. The clinic in Cincy thinks that the AVM may involve his bone in the big toe. You can see on the xray that his bone is not solid. Because of the possible bone involvement, they are saying that amputation is the only treatment. I will not accept that and have been on the hunt for more information. Finding information on AVM's in extremeties is difficult and I am trying to find some experts that are willing to try alternative treatments. We have had a second opinion from doctors at Boston's Childrens hospitals. They are also saying amputation but less of the foot. They all have the concern that when my son goes through puberty, his AVM will become systematic. His stress fracture did heal and he is running, jumping and playing soccer harder than ever. I am looking for information from others that may have children with an extremity AVM. Any doctors that you can recommend??

[nickbar]

Did you see Dr. Fishman in Boston?

Corinne

[Donovan]

Hi,
My daughter has an AVM in her hand. It also involves bone. There are holes in the bones due to the blood vessels going through the bone. She has been seen in London, Ontario by 2 different specialists and then at Sick Kids in Toronto. Never has amputation been mentioned. It has now been suggested that we either go to Boston Childrens Hospital to be seen by Dr. Patricia Burrows or to Colorado to be seen by Dr. Wayne Yakes. In all of my research, these two names come up often .They are both interventional radiologists that specialize with AVMs of the extremeties. Good Luck

Thanks for the replys! Corinne, do you have Dr. Fishman's first name or specialty? I have heard of Dr. Yakes and just learned of Dr. Barrows on from this website. Thanks again and good luck!

[nickbar]

Last Name Fishman
First Name Stephen
Title/Specializing In internal hemangiomas
Hospital/Clinic Surgery Department
Address 300 Longwood Avenue
Address Boston, MA 02115
Work Phone 617-355-8166
Cell Phone
Fax
E-mail
Updated 7/4/2004
Misc. Information
Contact Info Carole Roberts

You can call email me if you want. sbenes@alltel.net. Dr Wayne Yakes does nothing but AVM's. He has saved many of people from having thier extremities from being amputated. He shrunk my AVM in my left foot. Unfortunately because of its location I am still ahving problems. PLEASE DO NOT LET THEM AMPUTATE UNTIL YOU TALK TO DR YAKES!!!!!! SUE

[KristieinStMarysGA]

I have an AVM in my left elbow/forearm.....and havent been able to get anywhere with this radiologist that a vascular surgeon referred me too. He doesn't return calls, he called me once saying I need an arteriogram (I think that is how you spell it) I have had CTscans CTA scans, ultrasound, mri/mra and blood tests.
Anyone from the se georgia or ne florida area ? who can help me find a local doc???

Hello, I too have an AVM in my right foot that was diagnosed when I was nine years old. My case sounds similar to your son's, as I was diagnosed with the hemangioma (sp?) initially and found out about the AVM later. I am twenty-eight years old now, and it has been a terribly rough road. My AVM is complicated, and I have seen more specialists than I can even remember. Many wanted to amputate, but my parents felt the same way that you do and explored every alternative imaginable.

My AVM is congential, and it is the type that is aggravated by hormones, so when puberty hit I experiened pain, severe swelling, and the appearance of my foot changed drastically (visibly enlarged vessels, deformed toes, osteoporosis, etc.) I was treated by vascular surgeons at UC San Francisco (I am from California) with embolizations to try to slow down the blood flow, which proved ineffective, and had to undergo surgery to fuse the growth plate in my right knee so that my legs would develop evenly. With the amount of blood flow coming from my foot, the bones in my right leg were growing faster than my left leg.

A few years ago, the surgeons in San Francisco gave up and suggested amputation, but I am simply unable to accept this. I am now undergoing monthy ethenol treatments with Dr. Wayne Yakes in Colorodo. He is very good, and has a fabulous repuation (as I am sure you have already read!) I am not sure how complicated your son's AVM is, (I pray that it is mild) but I urge you to treat this as soon as possible. I have gone from a healthy, active young women to someone confined to crutches and a wheel chair. My foot hemorages frequently (that began when I was nineteen) and I have developed severe ulcerations on the bottom of my foot that just won't heal. The pain is unbearable. The only way to cure this problem is with aggressive treatments as soon as possible, and Wayne Yakes is the only way to go. People fly in from all over the world to be treated by this amazing man.

Thinking of another child in this situation brings me to tears, and if there is any way that I can provide support or information for you and your son, please don't hesitate. I don't think anyone can truly understand how devastating this can be without going through it. Dr. Yakes has been a pioneer in this area, and will do whatever it takes to heal your little boy. His staff is wonderful as well.

Best of luck to you and your family!

Debbie from California

[Nicolefila]

I just thought that those of you being seen by Dr. Yakes should be forewarned that althoguh he has helped many people with this condition, I have heard from a couple of different people that he has caused them to have severe nerve damage. I myself was treated by Yakes and unfortunately, he severely damaged my sciatic nerve in my left leg. I am now unable to feel the lower part of my left leg and not able to feel, move or walk normally on my left foot. I have to use a prosthetic just to be able to walk and even then it's extremely challenging. He is very agressive when doing treatments and the treatments he administered ended up causing me a whole lot more trouble then I could have imagined. The hemangioma (Venous malformation) did not go away nor did it even get small enough to be removed. I was treated around 50 times w/ alcohol ethenol injections and the tumor is still there, causing me tremendous amounts of pain and discomfort and now recently has been causing me to have large amounts of blood in my stool. I just thought it was only fair that you heard it from someone with first hand experience of how big a risk it is being traeted by Dr. Yakes, or any doctor doing this same sort of procedure for that matter. On the other hand, obviously for many it has been a lifesaver. I just wanted everyone to know both sides of the story not just the fantasy one and I wanted people to know my story because it's been nothing but misery for me since I was treated by that man.

[Sadie]

My son, 22, was treated for four years by Dr. Yakes. Please know that nerve damage is very real as is losing your toes; my son experienced both. He visited Dr. Yakes 48 times for embolization.

Although I do not argue that Dr. Yakes is a pioneer in the field of AVM's, he is also VERY aggressive.

There are many success stories with Dr. Yakes but please know there are many sad stories as well. You must realize these possibilites before you agree to do the treatments.

I am available to anyone for questions and will help in any way I can.

Polly Morgan Saintshoes@hotmail.com son is Adam