7 yr. old daughter with AVM in foot

LWilder · #1 12-28-2010, 12:58 AM

My daughter has an AVM in her left foot. She first started limping when she was only 15 months old. The past 6 years have been marked by periods of pain, constant limping, numerous orthopedists and other specialists in attempts to diagnose her. After 8 MRIs, CTs, x-rays, and 3 surgeries (done by 2 different surgeons) ... the last diagnosis was AVM. The last surgery was in Jan. 2010 ... she's had an MRI in Aug and another one last week. 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 my bedroom crying because of the pain. We are in the process of yet another dr. search. I see lots of people who have seen Dr. Yakes and also Dr. Barrows. I plan to send my daughter's file to these 2 drs. Does anyone have any other suggestions or any other information to help us out? I also see many comments about the cost of Dr. Yakes ... doesn't insurance pay for the bills? Thanks in advance for your help! This has been a frustrating road to travel.

christen · #2 12-28-2010, 04:31 AM

I am 36 and have an avm in my arm that they have misdiagnosed too. I am getting ready to get treatment from Dr. Rosen in New York. I saw him and his team at this years conference and they were nice. He has a link on this site.

LWilder · #3 12-28-2010, 07:00 PM

Thanks Christen - I will check him out and add him to the list of possibilities! Best wishes!

jes · #4 12-28-2010, 07:53 PM

Hi HWilder, when I saw "She wakes up in the middle of the night and crawls into my bedroom...", my tears burst out right away. We just found out my son has an AVM on his thigh recently. He doesn't have pain yet, but, I'm so scared that he will face pain too. I'm in Canada, so, I also care about the cost to see Dr. Yakes. If you are in US, you might get insurance.