My daughter is 12. She’s had three surgeries to remove her AVM. We recently found out that she also has Ehlers-Danlos Syndrome. Are they related??
Funny I think so- I just dont think the docs are doing research with EDs and most docs dont know much about EDs if anything. My great grandma on my moms side died of aneurysm. what type I have no idea. She had beautiful skin was tall and thin. Her daughter my grandma had many heart attacks and strokes die at 80 and they wanted her skin for skin transplants....
My mom and my half sister both have it. Sister almost died of necrotizing fascitis last year.
I had a massive rare stroke in 2011 due to 5 blood clots in my brain and then grew a retrograde DAVF latter that year. And need to go back in for another angio/embolisom but scared esp now knowing I have EDs and that places a larger risk of tearing our veins and arteries.
Where is your family from? Does anyone else in your family have it?
Hi, Tina, good to hear from you. We have a number of members who have been diagnosed with both EDS and AVM. There are also members on the Brain Aneurysm community with both EDS and aneurysms. There is a correlation between connective tissue disorders and vascular anomalies, though I am not sure the connection is entirely understood. How did your daughter happen to be diagnosed? Is she having joint troubles or subluxations? And how is she doing generally? Any improvement in pain levels?
Tina, is it known what type of EDS your daughter has?
First, how she was diagnosed. Someone on a Facebook group has EDS and has talked about her struggles. I was curious about the symptoms, since my girls and I are double-jointed in many places. Doctor confirmed that my youngest has EDS Hypermobility. I am sure my other daughter and I have it as well. Daughter has prescription for water therapy. Waiting for EKG and other tests.
Second, daughter had a very good school year last year. We had a wonderful IEP and a great team eager to help. Daughter moved to junior high this year – new team + new teachers = stressed daughter. We are back to lots of aches and pains and depression and anger.
Interesting enough, we were all playing catch with a football yesterday. Looks like daughter has broken pinkie finger, so today will start with doctor/hospital visit to check those joints.
If there’s a connection between AVM and EDS, I am wondering if we need to have neurosurgeon review imaging or have new imaging done.
We are from Iowa. I have talked to a few relatives and haven’t found anyone who’s got EDS, though there have to be a few somewhere. My girls and I are double-jointed in at least 5 areas, so I am pretty sure we are all positive. As far as I know, my other daughter and I don’t have any aneurysms. My favorite neurosurgeon says he isn’t aware of a connection between AVMs and EDS, so I am trying to understand the link between an aneurysm and an AVM.
The members with EDS and AVM have reported single avms, not systemic ones, so I don't see a reason for new imaging myself, but would ask you to clarify with your daughter's neuro. EDS encompasses a wide range of conditions from hypermobility with fragile, stretchy skin to very serious vascular conditions. My kids and I are double-jointed in many places, too, but we do not have EDS. If your daughter's doctor made the diagnosis on hypermobility alone, I would encourage you to get another opinion, as hypermobility alone is generally not considered to be enough to base a diagnosis on. (Otherwise, every kid in my son's ballet school would be diagnosed with EDS.) There is good information at this site: http://www.ednf.org/
I'm sorry the change in school and situation has brought new stresses. I hope the finger is okay. Keep us posted on what you learn from the hospital. All the best to you!
Aneurysms and AVMs are both vascular anomalies. Some of our members have both. Tina, talk with your daughter's doctors, but I don't see any reasons here for you to worry about aneurysms in other family members or even EDS. If you haven't suffered a lot of join pain and dislocations, I wouldn't start putting the label of EDS on you or your kids just yet.