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AVM Survivors Network

Received Shocking News today...2nd AVM!


#1

I am in shock! My 14 year old daughter was found to have an enlarged left coronary artery at about the same time that her spinal AVM was found (age 9). We had several echocardiograms and had been followed by cardio for a few years. In the mean time the whole disaster with her Spinal AVM unfolded. Last year she had to go to the ED for an unrated issue and had a EKG that showed changes in the heart. We followed up with Cardio again and had a stress test and another echo. They ordered a CT scan but during the CT the machine malfunctioned and they did not get the needed images. In order to not expose her to more radiation they sent us to NIH as part of a study to use a new CT scanner with low dose radiation and high resolution 3D imaging. The result came back today and it showed that she has a Coronary Artery AVM. What are the chances of having a second completely unrelated AVM? We have not told our daughter and don't plan to until after Easter break, but she is going to flip out. We had such a horrible time with the spinal AVM that left her with so many issues including no use of her bladder. We will wait until we are at the Cardiologist to have him help tell her. Does anyone else have a second unrelated AVM?


#2

Hi Margo,

I'm sorry about this surprising turn of events. I personally don't have another AVM that I'm aware of, but, from what I've read on this site, it's not surprising for people to have multiple ones if they are located outside the brain, and I believe I've read stories about other members with multiple AVMs.

You might want to pose that question in the Extremities and Other Non-Brain AVMs group, since a coronary artery AVM would qualify you to have an interest in that group.

All the best,
Debbie


#3

Margo, I am very sorry to hear this news. This sounds like HHT or another genetic condition that can cause multiple avms. Please see htt.org and join our HHT subgroup. We will talk more when I get back from Europe. I will be back in Silver Spring in June and hope to meet with you in person, too.


#4

I am so sorry to hear this news and understand completely. I had an AVM right occipital brain removed 20 yrs ago another AVM was found in my left arm. Our 10 yr old son has an AVM left parietal being tested via proton at mgh. I


#5

Thanks, I would love to get together and chat.


#6

I am sorry to hear ablut her problems. Our children should be happier healthier and a better life. I am not a praying woman, just a Jewish mom who is great at Jewish guilt, but i do hope the best. I was lucky-had no time to freak out too much knowledge can be dangerous but I’m great now 6 yrs later. No sise effecgs just taking eavh day at a time.


#7

I’m sorry to hear about this and pray for your daughter. I have seen several posts here and on other sites where people have an AVM treated and another forms years later. Mine is a stage 4 and sots centimeters from the motor strip. My original bleed left me with left hemiparesis. After receiving my first (too low) dose of radiation 3 aneurysms formed inside the AVM so it really doesn’t surprise me that something new formed.

We’re just wired a little wrong :frowning:


#8

I am sorry to hear such bad news. I don’t know that AVMS in different areas are really unrelated especially if you have HHT as well. My husband literally has too many to count. He has 2 very large ones in his spine, numerous in his neck and the base of his brain, one in each arm, in his jugular and his right leg. The 2 in his spine and 1 in particular are very worrisome. Both are pushing his spinal cord and slowly little by little he is becoming a paraplegic. He appears to be the only recorded case of his kind. All tests that can be done have been done and after last weeks spinal angiogram the consensus among the clever people is that any surgery would be futile and very very risky. So while he still has control of his bowel and bladder, the thought was too leave well alone. His records are being sent to anyone and everyone in this country who maybe able to shed some more light or offer a different opinion. For now we live each day to the fullest as best we can and hope the inevitable is a long way off.


#9

Like everyone else, it tears at my heart that you and your daughter have had to face such difficulties. I had AVMs and AVFs in my brain and spine. I don't know if mine were related or not. The doctors continue to test regularly because, I'm told, additional AVMs can form (learned a few weeks ago that I have another forming, in fact). I think you'll find, unfortunately, that this is not an uncommon occurrence.


#10

I Don't have a second unrelated AVM ... but I had to respond to your post. I am in awe of your strength as a parent and your daughter sounds like a fighter too. <3


#11

I have one in my left hip bone and surrounding tissues and the other I. The left femur and surrounding tissues that has Kipple Tennuary Syndrome(sp?)


#12

Hi Margo. I am so sorry about this diagnosis. This is the link to the HHT sub-group…http://www.avmsurvivors.org/group/hht.


#13

Hello Margo, like so many others, I am so very sorry this is happening to your daughter and your family. My thoughts and prayers are with you all.


#14

Hi Margo, so sorry to hear about your daughter, if it is any help I was diagnosed with a very large AVM in my left cerebellum, my left cerebellum was removed in 2 surgeries, I was 30 at the time, then 10 years later almost to same time they discovered another AVM in my spinal cord, I had that removed I also had problems with bowels but I have it under control now, it does take time, I had very little chance with the brain AVM, but I was so blessed to go to Dr Robert Spetzler in Phoenix,Arizona, I am 54 now and have a 15 yr old son, I worry everyday thinking of him having this, but I am here and still alive, they have never found another AVM but do have some heart problems but doing ok, I just have to go for yearly checkups. May God Bless her stay positive


#15

I had gamma knife in 2009 in my right occipital lobe. I was told I had an "arterial occlusion" in my right arm. When I went for my last checkup in November (AVM healed or dried or whatever happens to them) my neurosurgeon said something about the AVM in my right arm!!!! I said WHAT???? He told me that was what an arterial occlusion was and wondered why my other Drs. never told me that. He also said many people with 1 AVM have more than 1. Sad but true. His name is Dr Peter Nakaji with Barrows Neurological Institute In Phx. AWESOME people there! Just wanted to give him a shout out. : )


#16

so sorry to hear the news. Sending you positive thoughts, stay strong. Blessings to you and your daughter.


#17

Barrows is the best! I also add my good thoughts to your daughter. Sorry I did not say so in my comment yesterday.


#18

Margo,

I am SO, SO sorry for the news here with your daughter. ONE AVM is MORE than enough, let alone TWO AVMs.

How about the best thing WE CAN ALL DO, is sending prayers, prayers and prayers to your daughter and you. THAT can be powerful healing, I believe!

Lisa A. Stuckel/Kane


#19

I am part of the Spimal and Extremities groups. I am just in shock about this. We have already been through so much with first Spinal AVM. She is in therapy for PTSD from that. I need to think about how to break the news to her. Thank you for your support.


#20

I am looking into the possibility that she may have HHT. thank you for your support, I am still trying to process the news.