Uneducated avm relative

I am very unfamiliar with AVM. I learned about it after the sudden passing of my brother. I am curious to know how he was able to walk around w/ this undetected. A year before his passing, he had a cat scan, mri, ekg…How is it that no one detected this? My family and I are left with no answers. We feel completely lost. I’m opened to hearing any suggestions, thoughts…etc

Again, I am so sorry to hear of your brother’s passing, Michelle. Was it caused by the AVM?

Was he having problems that they felt it necessary to do a brain CT and MRI of his head? I was told the reason is that these vessels were never normal. The part of the brain where the AVM is located never received proper blood flow and never functioned properly. So the rest of the brain developed around it. The problem comes in when it is in an area that causes seizures or it bleeds. That’s how they can go undetected until something happens or it is found incidently. The part I can’t answer is why no one saw it on a CT or MRI. Although, I think I do remember reading something once that said the only definite way is with an angiogram, but that may be something I miss read. It is devasting to lose someone so suddenly. I’m so sorry for your loss. I hope this helps answer some questions and I’m sure others on here may be able to explain it better than me.

My condolences for the passing of your brother. With each AVM there are just so many different variables, so that makes your question very difficult to answer. Did you get a chance to ask the doctors the same questions? Many AVM’s go undetected for years and years. Sometimes there are warning signs like headaches, seizures and other things but sometimes nothing until they bleed and tragically, there is a 10% mortality rate with a bleed. Some AVM’s are very tiny, other’s large. My son’s was large enough to be obvious on a CAT scan but others that are very small of deep may be missed with the first round of testing. I know I have read that on some people’s stories.
I just think you would all feel better if you asked the doctor some more questions to better understand how it happened. It would be a terrible feeling to not understand the circumstances and my heart goes out to you.

my heart goes out to you for your loos of your brother…of course you want answers…i suffered miagraines my whole life and in my late teens i was sent for a ct and the doctor told me nothing was wrong…i just happened to be a miagraine sufferer…10 years down the track i wake up one morning and realise…i have lost all my left field vision …i am sent for a ct and told i have an avm and it has stolen the blood supply and oxygen from my occipital lobe resulting in loss of vision…it is 12.5cms big…how could this be missed 10 years earlier …i asked many doctors and surgeons and the only reply i got was it must have been a dodgey scan it has always been there and has always been that big so there is noway it could be missed by an effective scan…Do you have the films of the scans? if you do it might be worth getting someone else to have a look to see if they can detect the avm…i really hope you get some answers to your questions so you are able to rest your brother in peace…my prayers are with you and your family xxx

Michelle, so sorry to hear about your brother. I think you will find that a large number of people on this site did not have their AVMs diagnosed, nor did they even know they had one until something pretty major happened. AVMs are something that usually develop before the person is even born, or sometimes shortly thereafter. I don’t remember the exact statistics, but I remember reading that a vast number of AVMs do not cause any symptoms until someone is in their 20’s. There are also three ways that an AVM can manifest itself… It can remain hidden for a person’s entire life and never cause any problems, it can develop to a point where it causes symptoms and can be diagnosed and perhaps treated, and third, it can go undetected and rupture, taking the person’s life.

I was not diagnosed until I was 24. I started having terrible headaches, felt nauseated, my vision seemed a bit different than usual, I was having a hard time finishing thoughts and statements, etc. But it was not these symptoms in themselves that led me to a diagnosis… It was went I went to have a routine eye exam one day and the optometrist was surprised when he wiggled his fingers in an area in front of my face and I could not see them. He had me do a peripheral vision test and saw that the upper-right corner of each eye had a blind spot. He sent me to have an MRI and the rest is history.

In the first 24 years of my life, I played high school football, was a sprinter on the track team, studied and practiced martial arts for years, used to swim, kayak and body board in the ocean, lifted weights, and did a long list of active things. One would think that any one of these physical things would have given a clue that I had a swollen, malformed artery the size of a golf ball deep within my brain. It was not until one day I was on a walk at the local part with my wife (then fiancee) and I started having a headache and felt sick. While I have no way to prove it, I think that is when I think my AVM finally decided to start making itself known.

In regard to your question as to why no one detected the AVM even after having an MRI/CT/EKG, well, the only thing I can say is that the human body sometimes makes no sense. I don’t want to go on telling a bunch of long stories, but I think I have a couple that fall in the same category. In addition to myself and a few others on this site, I have run into three people that I know personally that have come in contact with my neurosurgeon, Dr. Kim.

  1. My co-worker’s dad, an older gentleman, was diagnosed with a tumor in his brain between his skull and the membrane surrounding the brain itself. He went in to have surgery to remove the tumor as it was a very aggressive form of cancer and they felt that surgery was the best option. The man died during the surgery.

  2. The 23-year-old niece of another of my co-workers had long been epileptic and was tired of it and wanted to have surgery to help prevent her seizures so she could lead a normal life. She went to Dr. Kim and had surgery to treat the section of her brain that was determined to have been causing the seizures. She had the surgery, recovered well, went back to work and school shortly after. One day her boyfriend went into the bedroom and found her in her bed; she had passed away after suffering from a seizure.

  3. An old classmate of mine from high school was diagnosed with having a large tumor in the frontal lobe of her brain. She had surgery by Dr. Kim’s partner, Dr. Duma. The tumor was removed and she started feeling better. She continued to have MRIs on a monthly basis just to make sure everything was still clear. One day she started having headaches and dizziness, so the doctor sent her in for an MRI and they found that within the span of a few weeks, the tumor had grown back to almost it’s original size. She went in for another surgery exactly one year after the first. She survived and has now gone almost 14 months without any signs of the tumor returning.

Of the three, it would seem most likely that my old classmate with the tumor would be the one that would be the most likely to pass away as a result of the medical problems in her brain, but she is the one of the three that lived.

Why? Doctors may have explanations, but does that make life feel any more fair? Not really. I’m deeply sorry about the loss of your brother.

Michelle,
I am very sorry for your loss! I know that finding answers is so hard and important when loved one is taken suddenly from you. The one thing I have learned by joining this site. That each AVM is different for each person. My daughter was 18 months when her facial AVM first started showing signs. I never even realized until this past November that this thing could be in the brain! I have learned a lot from the wonderful folks in this site. I hope that you can find some answers.
Again, so sorry about your loss.
Jody

Oh Michelle…I am deeply sorry for your loss! I can’t imagine the anger, confusion and pain you and your family are going through with the sudden loss of your dear brother! Praying that God will give you all His peace, strength and comfort during this tragic and painful time!

Can only tell you that I lived 52 years with avm/aneurysm undiagnosed. I had CTScan after CTScan for headaches, seizures, blood clots, strokes (3 of 'em), and not a single test or scan showed the avm/aneurysm, until I had an MRI and they found the avm/aneurysm in my case.

Again, I am so sorry for your loss!