Looking for the best possible Doctors for our daughter. Brit was born with 3 port wine splotches on her mid-thigh. Drs thought it was a birthmark, by 3 yrs of age it looked like someone bit her and a large bruise. It was diagnosed through mri at age 9 as a cavernous vascular malformation. At age 13 Brit under went 5 laser surgeries 6 weeks apart. Pain was almost gone and surface stains were gone but still looked like a big bruise. About 5 months ago it was accidentally hit and started hurting and began growing again. Plus puberty has just started… and it is growing rapidly and causing severe pain. Brit had a brain, cervical, thoracic and lumbar mri of the spine a month ago. They saw a lesion on the spine at T2 with a void of flow around it. ??? They performed an echocardiogram of the thigh Cavernous Vascular Malformation in ther thigh and it was discovered that it is actually a “High Flow Ateriovenous Malformation” and it is fed by the Femoral vein. It has lots of flow in but slow flow out. It appears to be encapsulated. We just had our first appointment yesterday with an interventional radiologist in idaho. He was very young and said that the hospital probably sees 3 to 5 low flow AVM’s each year… but has probably only ever seen 3 highflow AVMs. The Dr. Has recommended doing embolization in 4 to 6 sessions and starting with another mri with contrast to see how many femoral branches are feeding it. I don’t think he has ever done one before so this makes us extremely nervous as he shared all of the dangerous risks. He asked about her heart… we have never had her heart checked out but she does have a murmur. We would love suggestions for getting our daughter the very best treatment possible! We are willing to go anywhere in the US but we live in Idaho. Thank You for reading!
Contact barrows nuerological institute in Phoenix Arizona, They will consult you over the phone, praying for her and your family, be strong,
Hi, Brit’s Mom,
Welcome to the site. We do have some folk with leg, foot and thigh AVMS-- you should find them under Extremity AVMS if you scroll down the home page. You can also search for “thigh” using the grey magnifying glass in the green banner.
When I had my MRI, I got some similar words on the report “flow void” means that the scan was potentially moving at exactly the rate of blood flow (I don’t quite know… the same direction of scan as the flow) so it appears as undetected on the MRI. From what I read it means “not detected”, rather than “no flow”.
In the same way, my neuro interventional radiologist described my cerebral AVM as quite high flow but treated it with an embolisation.
You need to be confident in the advice you’re getting, so do look to other hospitals or doctors for a second opinion, perhaps. Some will look at MRI results sent (no visit needed) to give an assessment. Andy is right, Barrow is a key centre but there are others. See the “recommend a doctor” category.
Whenever you need help, just shout up. We are all here for eachother.
Very best wishes,