This might sound weird or late or whatever, but I was wondering, did anyone "know" they had an avm before an actual diagnosis? Like did you "feel" like something was wrong? Did you feel like your "symptoms" added up to something but didn't know what? I ask because I had a few symptoms and felt they made me crazy! My avm is supposed to be gone now (crani) and I don't think I have any regrowth symptoms, I was just wondering randomly.
I'll give a few examples. My headaches/migraines were always in the same spot. I had the strangest dreams that seemed to just go away after my avm was removed. Hallucinations that I never really thought meant anything aside from maybe too much experimenting with drugs maybe; too little sleep maybe but am now (1.5 years post bleed/crani) putting it together with the avm. I thought my bruit was normal, didn't even know it had a name. Just called it a whooshing noise.
..I thought I had a brain tumor but never said anything because that's what I thought would make me sound crazy, so I just kept that tidbit of crazy to myself. Now I wonder, after putting things together (every day I seem to find something new to add to the list) if my body was "warning" me and did I not listen, or did I listen and ignore? Did I listen and deny? I don't know. Still so many questions, it's hard to sift through them all sometimes. I also, as I reminisce with others in my small family, discover that I had "casually" mentioned odd things that can be connected to the avm. Like talking about a stroke for no real reason...just odd things.
So, I was wondering if anyone else felt something was wrong before their bleed or random check-up/exam led to the discovery or am I the only one that I guess ignored the "voice of their body." Please share your opinions or stories:)
And please: don't direct me to the search bar (that is annoying advice) or a sub group (also annooying) or someone's profile (those people will comment if they experienced something similar).
Hi Kristi,
I didn't think I had warning signs before I was DX with my AVM. However, after DX things from my random things from my past fell into place. I have always had allergies to a variety of airborne things. I had first answered no to HA, except from my allergies acting up and causing pressure at the top of my head. It would even hurt to brush my hair some days, lol. I played competitive soccer for 20 years, had hip surgery on the right side and had difficulty with balance due to tipping or drifting to the right as I walked. I always walk on the right side of people to avoid bumping into them. I had tingeing that eventually progressed to numbness in my right hand for years that was DX as related to deep groves in my shoulder from bra straps. In the last 2 years I have had severe cramps in my right foot and calf, where one of my toes would be straight up and stiff and I would be in tears trying to work the area for a release point so it would stop. Plus other "random" things like tripping, dragging, my right foot- again, assumption that it was related to hip surgery. Sorry this is so long. I found out I have an AVM because I had a seizure 3 days post surgery from my 2nd kidney surgery in a 6 week period. Neurologist said it was a reaction to Cipro (ciprofloxecine) antibiotic that I had taken after surgery. Random, no epilepsy, no medication, and cleared to drive. Told me to schedule an EEG and MRI in a month and come back for a follow up- just following procedures. I'm AD/HD, I asked the girl if she could just give me the 1st available slots for each one. She was very kind, laughed and found an opening for the next night-MRI and the following morning-EEG stating how lucky I was because that never happens! See, God was looking out for me and had his plan all along. She told me it would take 2 weeks for results so she scheduled me for my follow up appt. with neuro doc for 6 weeks out. Tests were done on Friday, phone call from neuro doc 3 days later, on Monday, needed to go over my test results. I have an AVM over my left motor and secondary motor cortex that includes posterior frontal lobe, grade IV. All visible without contrast. Overall I don't think I ignored or overlooked my symptoms, they were never put together and all logically DX connected to other issues. I'm glad I found out the way I did and not due to a bleed. It has allowed my extended family and I time to adjust to each new finding. I just hate the waiting, lol. Have a great weekend! ~Elizabeth
Hi Kristi-I had no clue prior to my bleed, scans, surgery.
I had a few headaches-one which was horrible-and the only time that I called in sick-at the time, just thinking that it was a really bad migraine…still have no clue if it was related or not technically; however, in my gut, I think that it did.
Also, I really struggled with balance-issues. I was even searching for some compatible shoe inserts that would fit my ballroom dancing shoes and give me better balance.
You know what they say-“Hindsite is 20/20.”
Hi Kristi,
My wife had numbing in her legs, but she attributed it to sitting on her foot under her in a chair sometimes. She also had some headaches, but shrugged it off as well. Looking back, since her AVM presented with seizures, it might have been a warning.
Sorry you don't like the search feature. I use it often, for the simple reason that, like right now, there are 3 members online. Depending on the amount of posts, your post will stay near the surface maybe one day before it is more than 2 pages back. I know some members only look at the first page or two of current posts, so your post will most likely not be seen by a very high percentage of the members. Pls don't be harsh with those of us that suggest searches or post links--we're only trying to help.
Best wishes,
Ron, KS
That's weird that you and Ewillis mention balance issues. I was known for being clumsy but usually on my left side (never had extra numbness on that side or unexplained loss of feeling). Just after I had my first baby, I got the whole Wii fit setup to try and drop pounds. On the balance board, it told me I leaned right and every time I'd get on the thing I'd get the same results and I'd always complain that I couldn't feel that I was leaning so far to the right because I couldn't feel if I was leaning on the left foot or not; now I have a defecit on the left side:/
I only said that about the post because, in all honesty, if I wanted to research it, I'd use the search option. And I do that, that's when I don't post a discussion (because I found my own answer). But sometimes you don't find the answer or you want one that's relevant to at least the same year as the one you are currently living in, not 2009. I wasn't trying to be harsh, my bad.
No harm, no foul.
Reason a lot of us mention it is sometime newbees either don't see it or don't know what it does.
Just like some folks post "Anyone live in ____?" I usually respond that if you go to members, do an advanced search by city or state, you can see names of those living near you. (And if you do this by state, you need to search both for abbreviation (KS) and full name (Kansas), as a search for one will exclude the other.
Hope this helps.
Ron, KS
Hello Kristi...I had no idea that I had an AVM prior to diagnosis. I did however, notice some symptoms that I should have paid attention to.
Months prior to diagnosis, I've noticed that I was going through "intellectual limitations" such as comprehension, understand what people were asking me. At one point, someone would ask me a simple question, and I would misunderstand it completely, leaving the person who had asked the question frustrated and having to repeat the question to me. There had been plenty of times when I would speak, what I would say would hardly ever make sense, and then people would look at me as if I were crazy. I had a small feeling inside that something was wrong with me to experience these things, but since I was feeling healthy at the time, I ignored it.
I think that there were times when I have experiencing some behavioral inconsistencies, but I would always write it off as depression (as I was going through a really bad depressive relapse at the time). After experiencing these symptoms, I would get a migraine that would last about two days until I felt a stabbing pain in my right parietal lobe area (which would be later diagnosed as an AVM Bleed). My primary care doctor would tell me that I just had a migraine, when in fact it was an AVM Bleed (which I would not find out until I went to the Emergency Room a week after my doctor's appointment). Like I said, sometimes I wish I would have paid attention to the symptoms prior to my AVM Bleed, but what's done is done. No going back now.
I hope that you're doing well.
When I bled in 1975 it was diagnosed as a berry aneurysm. I was told it was a fluke and chances of it happening again were almost zero. In 1998 I had some light tingling in the area of the "aneurysm". My family doc ordered a CT. I was told it was just scar tissue from the aneurysm. I was treated with neurontin, building up the dose until I couldn't stay awake and then backing off. I was able to get off it completely. Between 1998 and 2009, I had these occasional spells of tingling, feeling like I might faint and like I was in a bubble. They were so few and far between that I never had it checked out. 11/11/09, blew my nose and had an instant headache. Went to work, headache kept getting worse (thought it was swine flu) so went home and to bed where I pretty much stayed for 3 days. I vomited a couple of times, ate and drank next to nothing, could hardly sit up.11/16/09 went back to work still not feeling good, but not with the pounding headache. Over the next 3-4 weeks I had a couple of those weird spells, and a few occasions of feeling faint. I started to think maybe I never had the flu and maybe I bled again. Over the next year the frequency of the spells increased until they scared me enough to go to the ER. I got hooked up with a free clinic. Neurologist did MRA and found the AVM where the supposed aneurysm was. I am not seeking treatment because the risk of bleed goes down with age (calcification) and I don't have insurance. I wear a medical alert pendant, have a cell phone for emergencies. I am in God's hands. IF I ever bleed again, I'll either make it to the hospital in time or I'll meet my Maker and I'm fine with that.
I didn't know I had an AVM until I had a Grand Mal at work. I work on a blood mobile and freaked everyone out. We had donors on the bus. I was taking someone's needle out and forgot how to do it. The last thing I remember was trying to tell someone I couldn't remember how to do it. I had been doing this for 8 1/2 years. Thank God my co-workers did not let me fall and I didn't hurt the donor.I remember having bad headaches as a child. I would get one and throw up and sleep it off and when I would wake up it would be gone. My mama called them "sick headaches". I have always gotten dizzy. When I was in school I would forget where I was for a minute. I would feel like I was going to fall over. I even ran into a wall after getting out of bed. Everything went black and I couldn't see. One time when I was om a roller coster I couldn't see even though I had my eyes open. Before I had the seizure I had started to have increasing headaches for about a year. I put them off to sinus headaches because they were always in one spot. I even passed out a couple of times. First 2 times I did it I was sick. So I passed it off to that. The last 3 times I wasn't sick. So I guess my body was trying to tell me something way before I had the seizure.I had started to get dizzy on the treadmill but I passed it off to being dehydrated. My AVM is located in the Left Frontal area. It is pretty big. I used to joke I had a brain tumor. Well it ain't no joke. My doctor says it is too big for surgery. So he has referred me to a radiologist. I go back this Friday the 7th for a CT with contrast so she can see what is left. I have had 2 embolizations. She says I may have to have staged treatments. So that can take up to 2-3 years for the thing to go away. I want it out.
I always had migraines and sensitivity to light and sound. But I always had this strange connection to epilepsy. Although I never had a seizure in my 37 years leading up to my diagnosis, I did have this connection to it. Very odd.
So I see I'm not the only one! I think it's bizarre how we have these symptoms but we each had another way to explain theM, an excuse for them beit lack of sleep or nutrition, stress at work or some other medical problem with similar side effects or symptoms. We all seem to have had signs that we ignored. I remember once I had a dream where I was in a hospital bed in a green room and people were really tall and standing over my bed yelling at me "HAPPY NEW YEAR" and I woke up screaming. I was really young. I was sick for a few days after that and that's all I remember, except the dream. It's one of the few that I NEVER forgot. I later found out this is a syndrome called Alice In Wonderland Syndrome (something it is believed Charles Lutwidge Dodson (Lewis Carroll) sifferred from)which is associated with palinopsia which is associated with dural avms, migraines, epilepsy and non-epileptic seizures, tumors, visual and auditory disturbances and/or hallucinations, anxiety and depression. It's amazing how we all share the same sort of phenomenom.
In essence....WE NEED MORE RESEARCH