AVM Guide Question #4 - How did you discover your AVM and what were its symptoms?

AVMSurvivors.org is in the process of preparing a guide for individuals that have been diagnosed with an AVM. The purpose of the approximate 20 page guide is to provide hope for a vibrant future, information about treatments, life expectations, and help for family members encouraging an AVM survivor. Over the next week, you will see me asking various questions concerning your AVM experience that will be shared in this guide.By participating you will be a source of help & encouragement to newly diagnosed AVM patients, their family, and concerned friends. So over the next week or so, be looking for questions from me concerning your AVM. By responding to these questions, understand that your answer may or may not be shared in the guide. After the questions have all been answered, a team from AVMsurvivors.org will begin the editing process, which will conclude with a guide that for many years can be a reference of hope for those in our growing community.

Here is question 4

How did you discover your AVM and what were its symptoms?

As an example, my AVM was discovered accidentally after I had a car accident (MRI) and I had no symptoms...

Thanks again,

The AVM Guide Team

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My avm was discovered after I had a seizure (never had one before). MRI confirmed it.

My AVM was also discovered after a Grand-Mal Seizure, I think I never had any other symptoms..at least none I know of...

Hi Suzy - post-coma after my bleed - about 3 weeks after emergency crani.

My former massage therapist (years before I was diagnosed) had mentioned a strong pulse in my right collarbone area which I just shrugged off. During the demise of my marriage in 2008, I was having heart palpitations from the stress and later found out my heart was working overtime trying to pump blood through my axillary artery that was being squeezed by the AVM. After my diagnosis and before my stent/coil surgery, I got tired very easily, especially in warm weather. Before the diagnosis, I just assumed my fatigue was due to my back pain that I've lived with since my 30's. My surgeon told me if I didn't have the procedure (in Oct 2009), I would eventually go into heart failure.

I am like Julie. I discovered I had an AVM after it was removed and after it had bled. The only symptoms I ever had were frequent headaches although nothing too severe until the bleed.

My AVM was discovered after the right side of my whole body went numb and sort0of tingly feeling. I went to my GP, who sent me to a neurologist, sent for an MRI/MRA, that night sent to the emergency room to be admitted unto the PICU. The symptoms came from a first-ever bleed.
Once the AVM was described to me, I remembered that the one morning I felt an extreme nausea and dizziness like I had never felt before. This feeling lasted for about 30 minutes, and felt shaky after for about an hour, but continued my regular daily routine. In retrospect, we were told that those were the most typical symptoms of a brain bleed.

My AVM was discovered while I was 13 weeks pregnant, I woke up one morning and it just ruptured. I was home alone with my 3 year old. He found my phone for me and I called my fiance who called 9-11. After a CT scan, an MRA and an angiogram, they told me I had an AVM. After a month in the hospital (and 2 embos) I went home and did my own research. Though the doctors said there are no known symptoms, I discovered I had what I would say are "textbook symptoms." I had a bruit all my life, which is the whooshing noise, I've always had short term memory loss, easily confused (basically, I'm super ditzy) and mild hallucinations which increased while I was pregnant. I told my O.B/Gyn and he dismissed them.

I had a stroke. I was 42kms in the bush when I hiked up a hill, bent down, stood up to find I had lost all control of the right side of my body. I describe it as when you sleep on your arm for so long that you have to pick it up to move it and bring blood flow back to it. My whole right side was like this except my foot, my fingers and my face. My tongue would occasionally go numb but then I would feel it again. If someone touched my skin I felt the coldest sensation you can imagine, colder than ice. If I tried to pick up my arm it would go so high then uncontrollably spiral to my side. I described this as my Dr.Seuss arm. I was fully conscious until I began to have seizures, then the medication put me into a terrible state of drug induced functioning coma where I could not tell you what happened in those first 10 days. Finally they got the meds right and I began to recover from the stroke before the craniotomy.

My husband Rick suffered with head aches and migraines since he was a boy. One day in the spring of 2011 we thought he had a migraine. The pain just got worse and worse until I knew, this is not like any migraine I had ever seen him have and called 911. He had a bleed out in the back of his brain and after two days they suspected an AVM. He needed time to recover so he could lay flat and have the angiogram to make sure. It was confirmed he had an AVM through the angiogram.
On a side note, after embolization surgery, Rick has not had one migraine, or even that many headaches. Tell everyone you know who suffers from migraines, if you get one that is so much more painful than you have ever had before, seek medical attention immediately!

I was sitting in the hallway of a school with my mom listening to my brother's orchestra rehearsal. I felt a headache come on very suddenly at the base of my head. I told my mom and she got me asprin, but she only had a Coke, and caffeine makes my headaches worse, so I told her I couldn't drink it. We walked to the water fountain, but I couldn't get my neck to bend enough to get the water. At this time, my world was turning on it's side and my vision was starting to double. While I was propped up on the wall, my mom went to get a cup from the teacher's lounge. When she came back, I was in a cold sweat and I was feeling nauseous. At this point she recognized I was in shock, so she got me situated in the bathroom and then found another parent to get my brother out of his rehearsal. Basically falling on my mom, we walked through the cafeteria to the car. With a trash bag in hand, we drove to the ER.They didn't seem very urgent about our claims, as my symptoms had settled down when we got there (about 7 minutes later) and didn't start really moving until they took an x-ray. From there, I was careflighted to Children's Medican Center in Dallas.

Hi Suzy. My AVM was found after me having many dizzy spells & my GP initally thought it was a blood pressure problem. As my spells increased and I started falling over regularly, he set me for a CT Scan & there it was: The Beast!!It was found in May of 2009 and I had brain surgery in July 2009.

My AVM was not discovered until I had a bleed which caused a stroke. Previous to the major stroke I had a minor stroke and periods of extreme fatigue and weakness that would travel between my arms and legs. I also had bad migraines.

My AVM was discovered after a routine eye test discovered Papilloedema (optic disc swelling), I then had an MRI scan that revealed the AVM. So far no bleeds and luckily not many side effects.

My brother's first was discovered when he was 20 months old; my Mum noticed one morning that one side of his body was droopy so she took him to hospital and they ordered a CAT scan with contrast...apparently that was lucky, as a normal one wouldn't have revealed it. We think he had headaches as a baby, as he used to rub his head more than normal.

The two current ones were discovered after he had a seizure in March 2012 - a normal CAT scan showed nothing. A subsequent one with contrast, then an angiogram, showed two. Other symptoms were arm tingling for the past year or so, and his speech had started to get a bit slurry, but he refused to see a doc about it all! He's having brain surgery tomorrow, May 14th.

Strange story...I had headacks after having my teeth cleaned, so my dentist sent me to have an MRI. The AVM was found that way.

My avm ws discovered after my gp sent me to see an opthamologist after having severe headaches and vision loss. THe opthamologist thought I may have had optic neuritis (an inflammation of the optic nerve) and sent me for an MRI scan. The MRI picked up the avm.

One afternoon i was playing on my computer when i had a severe headache on mu left side and my right side went completly dead. I would describe it like a bag of sand instead of an arm. Then i dont remember; i passed out soon afterwards. One month afterward my family told me that i had had an avm.

I had frequent headaches while growing up. I'm pretty sure I had my first 2 migraines in high school. Migraines became more frequent in college. Then, they really hit hard after I started teaching. I started having visual aura sometimes, but not always, before a migraine in my 2nd year of teaching. I also saw a doctor for the migraines (and started taking prescription meds instead of over the counter pain relievers) during that school year. Over the next several years, I'd occasionally see a doctor & switch migraine meds trying to find what worked best for me.

I had an e.r. visit in my mid-30's trying to get rid of a migraine. I'd taken a couple of doses of Excedrin Migraine, two doses of Maxalt, and a dose of Fioricet, and the pain still hadn't been touched. I was sitting in the e.r. at 10 pm with my hoodie pulled over my face & wearing my sunglasses. They eventually found me a semi-quiet place, shot me up with pain killers & Benadryl & let me sleep for a while before sending me home.

After that, I finally went to see a neurologist. He thought it was just stress. He put me on Norriptylene, told me to get more rest and to continue with my Excedrin, Maxalt,and Fioricet.

Migraines came & went, and I moved to another state. Eventually, at age 43, I had another e.r. visit--again after several days of migraines & that day not being able to control the pain at all with Excedrin, Maxalt, and Fioricet. The e.r doc told me, "A migraine isn't an emergency," but eventually gave me something to knock me out.

I went to my regular doctor the next morning. He thought it was stress, and prescribed Zoloft. (I had quit taking Nortriptylene.) My husband insisted on a CT, so the doc. finally wrote an order for it, and I went later that afternoon. The next day, they called to tell me to schedule an MRI ASAP. I had the MRI the following day (2 days after the CT.) That afternoon, my family doctor called, wanting to know who my neurologist was & which hospital he worked out of. I didn't have a neurologist in Texas, so I called to get the name of my father-in-law's neurologist. My doc said to head straight to the lab, pick up a disc with my scans, and head straight to the e.r.

The written report with the disc said I had an AVM. The e.r. (different from the one who told me that a migraine wasn't an emergency) didn't seem concerned. They checked for neurological deficits, then released me. The next morning, I started googling AVM & that's how I found out my diagnosis.

My 5 yr old son started complaining of his "head hurting" about 2 weeks before he started kindergarten. The first headache lasted pretty much the whole day, but after that initial one they were very sporadic and rarely lasted more then a few minutes. They never interfered with his activity etc.. Ironically, he always pointed to his right forehead when he complained of the headaches which is exactly where he has a port wine stain since birth, and the AVM is in the right frontal lobe. Eventually, I was able to get the pediatrician to take it seriously, and they ordered the MRI ...( he had an MRI at 5 months old due to the port wine stain to rule out Sturge Webber syndrome, which was negative, but the AVM was not seen on that MRI).
I've always known that something was " off" with my son, but we were never able to quite figure it out. We chalked it up to ADD, and diagnosed motor and mild cognitive delays. He is very intelligent, he just has a very hard time focusing and processing . I have always called him( to myself of course) my " little ditzy boy". He is often in a world of his own and forgets everything!
His little headaches were definitely his big miracle, because without them we never would have had reason for an MRI at this stage.

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