Left Leg AVM Losing Hope

Happy New Year Everyone…I am back in need of advice as you all helped me so much in the past. My son has a diffuse, high-flow full-leg AVM which was detected at birth. Among other medical issues over the years (cardio, orthopedic, infectious, etc.) he has been dealing with a non-healing ulcer on top of his left foot for almost 5 years. He has been working with a team in NYC who have done multiple embolizations, surgical debridement, wound care, and skin grafts. At this point, the wound remains open, colonized by pseudomonas, and he is dealing with a lot of pain all the time. Moreover, his entire foot appears to be breaking down at this point & getting worse. Tissue on the bottom of the foot and all the way up to the ankle is just flaking off and leaving raw and very sore skin on the surface. He is losing hope that the course of treatment he has been enduring for years is working and is no longer willing to keep trying. He needs hope & healing. Has anyone ever experienced this kind of open wound and/or tissue breakdown? Does anyone have any ideas for something new to try? Some other opinion or doctor he should see? That’s assuming I can convince him to even try…:frowning:

JeannieL, I am sorry to read about your son's avm. I am in Dallas, TX, but am attaching a link to an orthopedic surgeon that I have worked with over the years. Dr. Buch is a Texas transplant from NY, no doubt, that I would best describe as a "Dr. House" type. He always handles the toughest of tough cases with excellent outcomes. It may not hurt to reach out to his office for another opinion. GK

http://dallaslimbrestoration.com/providers/buch.php

Thanks so much. I will talk it over with Adam and keep this info at the ready in case he decides he wants to get a second opinion. Fingers crossed…

Hello Jeannie
I am not sure this will help but maybe worth a try
they have a drug they use for necrotizing Fascitis (flesh eating virus) (my sister had this) near San Francisco- Seton Hospital in Daly City

http://www.foxnews.com/health/2013/11/21/necrotizing-fasciitis-new-treatment-discovered-for-deadly-flesh-eating-disease.html

irrigate the area with an FDA-approved wound cleanser called NeutroPhase. Crew is a paid consultant for NovaBay Pharmaceuticals, the company that manufactures NeutroPhase, and he had been using the product to sterilize wounds for many years. NeutroPhase contains hypochlorous acid, a common chemical disinfectant.

Its worth a try - I am so sorry-
Angela

Thanks Angela. I will ask about this.

Any update? Maybe I will check FB.

Hi Eileen…Thanks so much for asking.


Adam did well with the BTK amputation. He still has AVM throughout the limb, so we are praying hard that this will heal. In addition to that concern, his heart is showing signs of distress again, so docs are planning to go in with a Cath to do a study of the enlarged right ventricle. Continuing to pray for best possible outcome.

Will pray

Hello Jeannie,

Thanks for sharing the update on your son, Adam. I was wondering how things went and whether you all decided to move forward with last Thursday's surgery at the Cleveland Clinic.

Its good to hear he did well with the surgery. I hope his heart ailment can be treated effectively so he can continue healing from his surgery. If I had to have a heart problem, I'd prefer it be treated at a place like the Cleveland Clinic. Its what they are known for...

We will pray that Adam's condition improves.

Best Regards,

Mychal

So glad he did well with surgery we will keep him and your family in our prayers
Thank you for taking the time to update us
Angela