Hindsight

AVMers, looking back before diagnosis/discovery did you have symptoms you think were due to the AVM? Do they “just” all of the sudden get “out of control” or is it that we excuse things instead of investigating them? Please share what things may have been going on that could have been red flags.

The # 1 symtom before an extreme AVM is an acute headache. In my experiece I didn’t feel any headaches, for 6 mos. noticed lost of present memory, for 3 mos. very sensitive sclap, 2 wks. passed out 3 times, the 3rd. was the comma one. My sister investigated before any symtoms, she had the knowlegde of the potential of an AVM, cause of me, Mom, Anunt and cousin, got it fixed and was able to recover soon, me, cause I excuse things, and see what can happen? I’m on the 6th yr. still recovering, BUT at lease I got a second chance on life. Learned the hard way, now I insist all the family get MRI/screen test. Lets all look out for ourselves and our love ones.

HI,

The only red flag I had was occasional dizzy spells. I would just out of blue get dizzy for a brief moment and then I would be fine. Once it was so alarming that I took myself to the ER and they did a cat scan but they didn’t discover an AVM. In Dec of 2007 I had an episode where I got this funky visual aura followed by dizziness, confusion, slurred speech, numbness and tingling , headache and vomiting. I thought it was a fluke and did nothing about it. Almost an entire year passed and it happened again identically to the first episode. After the second I realized something was wrong. I went to a Neurologist who ran an MRI and an AVM was discovered in my left parietal lobe. This was Dec of 08. I had two embolizations, one in Dec then one in Jan. I’m now having my radiation this coming week and then I should be done and just get monitored by MRI’s for the next three years.

Rachel

i suffered miagraines my entire life…doctors continued to tell me it was due to my sinuses…i ened up having a sinus operation in my late teens with no improvements in my miagraines…it wasnt until the avm stole my left field vision at the age of 27 that it was diagnoised and things got worse quickly from then on…siezures began and the avm started to steal oxygen and blood from other areas of the brain resulting in me dropping things from my left hand and dragging my left foot when walking…

For me it was the headaches, but like you suggest, I think I just made excuses instead of insisting on further investigation, even when pain meds. were no longer working. Also, I had the “bruit”, the whooshing sound in my right ear that I never even asked a doctor about, but I didn’t know it wasn’t normal, that everyone did not experience that. I wish there were a trick to knowing when headaches aren’t just headaches, when there is a real problem behind them.

Looking back not only did I have headaches for over a year before I went to the doctor. I also had some signs of seizures. Like tingling on my arms/legs, nausea, de ju va. So there were signs there I just didn’t know that they meant anything. Specially the seizure signs never new that’s how they can be. I just blew everything off.

Unfortunatly, however luckily, I had red flags from age 8 which progressed over the years until age 27 when I confronted my dr and told him to do test, do anything, but do it soon because if not, i feared the left side of my head was going to explode.

Symptoms:
Age 8 - Sudden headache, intense, crying rolling around. Father gave me ice cream, push-ups…cold items. Eased the pain temporarly. Age 9-12: Headaches on/off. Childrens aspirin, bed rest, etc. Parent began to wonder if I just wanted aspirin, because pain started quickly and leave as fast. Onset of nose bleeds pouring as if water, would not stop. I learned dr’s were not so bad after all. I believed then…it has something to do with my headaches, but never said a word about it, felt it was odd that it felt like it was draining from my head…if it was or not, I will probably never know. Age 13-18: More headaches and pain; sick to stomach…more aspirin and dristan (for sinus). More nose bleeds? Age 18-20: More medicine for sinus, even though I knew the problem was much more than that. Feel as if no one takes me serious. Age 21: Headaches of course, lost eye-site but it returned after a few minutes (happened without a headache). Then a Car wreck when eye site disappeared and all was black. hit telephone poll at 85 mph with car spinning. Broke arm/leg and once again another very servre headache. Age 22: My first injection of pain killer. Months later lost eye-site, but it returned after a few minutes. Age 25: Honeymoon? Arrived with a severe headache ; felt it would kill me…throw myself into hot shower…husband goes to get aspirin, tylenol and heating pad immediately. Age 25-27: Beat head on wall, run hot pulsating shower, heating pads, hit head with hands, go to bed prying the good Lord will take me as I can no longer take the pain. Go to dr appt and ask him to run test, any test at all, but please hurry as I could feel something in the left side of my head and it was going to explode. Told husband to take next work day off and to go with me. Already knew (deep down inside), they would find it and I would not be allowed to drive home. BINGO ! They had already had my doctor on telephone for me and set up an apointment with a surgeon before I left. Age 27: Hospital. Surgeon admits he can not save me…sends me to Mayfield Clinic. Test rat with Glue. Can’t do it. Crane preformed. Go home 3 wks later. Memory and words are not very good, still have headache and know without question they did not get it all, even though nothing was showing on angio. Return to work weeks later. Age 51: See Dr and tell him “Its’s time for contrast”. I will never forget the look on his face. Test run…BINGO! August…Stereotactic Radiotherapy. Waiting 2-3 yrs for results. Note: Others in my biological family suffered with severe headaches. I pray this type of information might help someone out there. Take every precuation…listen to what your own heart and mind are telling you…ask for the test WITH contrast.

I had balance issues for a few years -I then had tingling and numbing in hand and arm which made me investigate and the AVM was found.

Andrew appeared to have nothing odd. Occaisional headaches, but not severe. Seemed to have a low energy level for his age, but not overly extreme, just things like frequent naps after school. I will have to ask him if looking back if he can think of any odd feelings he may have experienced. He is young so maybe some of his symptoms had always been a part of his life. He may have just thought it’s normal. I’ll have to investigate further.

I had a lot of symptoms through the years, I questioned them to myself, but I did not go to Docs for all, when I did go I was misdiagnosed until the stroke 12-12-08. I started going to the doctors in 2000 for headaches. I went to ER once, I think I had a bleed and I was still misdiagnosed.

I had headaches all my teenage and adult life, I thought they were hormonal, may have been. I think they were a mix of hormones and the avm.

I know now that these things were due to the avm , I fainted once, burning thigh skin, arm went paralyzed for a minute or so all happened 17 to 18, burning thigh skin on going problem, arm could not move in a complete circle about 30 years old, I heard something in my head, numb toe. My avm was discovered after it gave me a stroke at 49 years old. I am fifty now and I have had embolization and GK.

my wifes was found by accident, was checking out a thyroid problem, no symptons
thanks
carroll dye

I don’t think I had any red flags. Sure, I had headaches, but nothing like when I had the bleed. It was a total surprise, sorry.

HI! I have only just had a CT scan of head (with contrast dye) and a vascular lesion discovered which they suspect is an AVM. MRI + angiogram scheduled for next week. Very scared but doing Ok, and very glad to have found this site today.
I am 26 years old. During the past 12 years I have often had this “funky visual aura” you describe - I never knew how to explain it to anyone but you sure nailed it ! :slight_smile: it’s like a rainbow-coloured, glittering aura which usually starts as a small crescent shape in my peripheral vision and then spreads to obliterate the entire right half of my vision. It usually subsides within an hour or two. I have no headaches/pain associated. The most recent episode, the aura subsided to leave two blotches in my peripheral vision, which have been there for 3 months now, and this is what led me to requesting a CT scan and ultimately being diagnosed with my (suspected) AVM. My neurosurgeon said these blotches are permanent, because a part of my brain has died due to the (suspected) AVM.
Other things I now “in hindsight” see as red flags - I have had dizziness where I would suddenly fall against the wall (I often put this down to my slack vegetarian attitude and thought I just needed more iron), pins and needles (sometimes so bad I would wake up in the middle of the night from it), I also feel tired a lot (another thing I thought was just due to low iron/B vitamin) and have a whooshing sound near my right ear, like a pulsating whoosh, especially in the past 6 months. I do get headaches, especially in the past year, but they are not at the same time as my “funky visual aura”. The headaches are either a strong ache between the temples, or a very hot feeling along my scalp near the top of my neck, almost as if there is a kettle boiling in there.
I have also noticed that the funky visual aura often happens when I am really overheated - for example the most recent episode I had the flu and a terrible fever, this was when the aura appeared. A year ago in Adelaide we had a heatwave where there was over 2 weeks of +45 degree C temperature. I had a terrible episode of the aura + headache on one of the last days of that heatwave. Has anyone else noticed an association with hot weather?

Rachel said:

HI,


In Dec of 2007 I had an episode where I got this funky visual aura followed by dizziness, confusion, slurred speech, numbness and tingling , headache and vomiting. I thought it was a fluke and did nothing about it. Almost an entire year passed and it happened again identically to the first episode. After the second I realized something was wrong. I went to a Neurologist who ran an MRI and an AVM was discovered in my left parietal lobe. This was Dec of 08. I had two embolizations, one in Dec then one in Jan. I’m now having my radiation this coming week and then I should be done and just get monitored by MRI’s for the next three years.



Rachel

I have this whooshing sound! It’s so odd - I thought it was from too many rock concerts but turns out it is probably an AVM. Never knew what an AVM was before! xx

Trish said:

For me it was the headaches, but like you suggest, I think I just made excuses instead of insisting on further investigation, even when pain meds. were no longer working. Also, I had the “bruit”, the whooshing sound in my right ear that I never even asked a doctor about, but I didn’t know it wasn’t normal, that everyone did not experience that. I wish there were a trick to knowing when headaches aren’t just headaches, when there is a real problem behind them.

I had headaches since I was little, but as I got older they got worse. When I got pregnant with my 1st child I did not have any red flags. But as the years passed and I look back now. I can see the red flags. I got sick coming home from Hawaii which was a ten hour flight, my sons grandmother had to take care of him all the way home. I got sick his 1st xmas. Then I met my husband (who has been great) and before we got married, I passed out in my car leaving work and I hit the gas pedel and hit a tree then a parked car:( they wanted to take me too the hospital but I said no. When I got pregnant the second time) I was taken to the hospital in downtown Annapolis where they ended up finding the AVM in the left side frontal lobe, it was so big that it went almost all the way down the whole left side(I still don’t know how big it was, just that it was big).