Multiple inoperable AVMs

Good morning,

I have been having nuerological(right side weakness/tingling/paralysis/seizure like), overall weakness, and cardio issues for almost a year and a half now. I live in S CA and have been to LLUMC, Cedars Sanai, and Mayo Clinic looking for a solution and answers. Recently I had my MRI report given to me from March and two doctors spent over 2 1/2 hours answering questions and explaining the concerns. They found what they believe at this time to be AVMs, on all the visible vertebrate in the MRI, which were the C1-C8 and T1 and T2. A body scan was suggested on the MRI. My neurologist said she feels that would not be helpful because she believes I have AVMs throughout my body, due to symptoms of sudden vein bursts and swelling behind the knees and in the groin areas. The doctors(cardiology, neurology, general) all agree I am currently inoperable.

Unfortunately, the delay in getting these results is partly due to a house fire we had in April which greatly disrupted our lives. However, we did discover that elevation is a key factor in my situation. Weather it is the heart or the AVMs or something else that is being affected by it we are still trying to find out. But I have more symptoms if I am at high altitudes, exercise, have more arrhythmias, get excited or stressed, and/or have a swelling sensation in the head.

I am also diagnosed with vasculitis, Ehler's Danlos Syndrome classical with vascular overlapping, and a couple electrical heart diseases. : p

Due to the 'vein fragility' the doctors feel I will bleed to death with surgeory. My grandfather did from an angiogram and the doctors will not do one on me which could help answer a lot of questions.

So I am left to try to live with all this. Is there anyone with similar problems?

I am still pursuing help and plan to see a vascular doctor or EDS specialist as soon as we get relocated and insurance. We are in transition right now. I am going to physical therapy but we will be moving out of state and to a lower elevation once the physical therapy is over.

I would love to hear from someone with multiple AVMs or multiple diagnosis or if someone else has been told they can not operate and why.

Dear Tessa,

Though my situation does not match your much, I want to encourage you to hang in there. It took a long time for anyone to figure out what my problem was. And then it was too late, in that I had a major bleed-stroke. Seek all the opinions you can, and know others know what you are going through.

Thank you. I am sorry they did not catch yours before you had a stroke.

   Tessa, my prayers go out to you.   I have multiple symptoms but, my avm is in my brain.    I was misdiagnosed by many doctors before I found one that figured it out.  I would encourage you not to give up in your search for answers and help.   I learned from experience that when some doctors don't understand something,  they jump to the wrong conclusions.   Feel free to read my profile and you are more than welcome to contact me if I can be of any help.

Thanks Ben. I read your profile. It's crazy how similar the symptoms are. The doctors would not let me drive for 12 days till they ruled out epilepsy this last March. My AVMs are very small but there are a lot and they suspect they are leaking periodically. I have had sudden vein bursting for a couple of years and they think the AVMs are throughout my body. They aren't even going to do a body scan because they said they cannot opperate on them due to a 'vein fragility'. We will be moving soon out of state and maybe I'll try some other doctors once were settled.

Praying for you as well. And thanks for the support.

Ben Morrell said:

Tessa, my prayers go out to you. I have multiple symptoms but, my avm is in my brain. I was misdiagnosed by many doctors before I found one that figured it out. I would encourage you not to give up in your search for answers and help. I learned from experience that when some doctors don't understand something, they jump to the wrong conclusions. Feel free to read my profile and you are more than welcome to contact me if I can be of any help.

Hi Tessa,

I'm new to this board so I don't have alot of expertise, but wanted you to know I'm praying. I pray that God gives wisdom and knowledge to the doctors you will be seeing. I pray that God protects you and guides you through your journey. :)

Our four year old daughter has received jultiple diagnosis and they will not do surgery at this time due to her other vein malformations. Basically we will go to the neurologist every 2 - 6 weeks, MRI every 6 months, ER with additional CT’s if we suspect another bleed. We were told in children they can either shrink or expand. Ask your doctors if this is possible for adults as well.

Hi Tessa. There is a sub-group here called Inoperable Avms. Go to the main page…scroll down look on the lower right side and you will see the groups!

I believe Lena Court on this site also has Ehler’s Danlos Syndrome. You may want to send her a message. She might have some good advice!

Thank you



Barbara H. said:

I believe Lena Court on this site also has Ehler's Danlos Syndrome. You may want to send her a message. She might have some good advice!