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AVM Survivors Network

Thank you! my story unconfirmed AVM

Hi everyone! before i begin thanks for this site, skimming through posts has helped me understand better.

my story is short as its still pretty new.

for the past 10-15 years i’ve been having some memory, balance and speech issues and what i thought were heart issues I’m sure some other issues too but i forget, duh memory issues lol.

I’d forget things that just happened, forget what i’m talking about. go into rooms forget why i was there, loose thing i just put down… that sort of thing. I’d mess up my words… i’d call the microwave the lawn mower or the remote control a giraffe…

At first i thought it was from being a heavy drinker and semi drug addict in high school… then i thought maybe early onset alzheimer’s, then i thought lymes (recently tested came back mostly clean)

the past 5-8 years i’d start to loose feeling in my legs and fell more than a few times, couple times down the stairs… get extremely dizzy when standing.

Its steadily gotten worse over time.

In June I had some full blown seizures. laying on the ground flopping like a fish according to my wife totally confused no idea what was happening, where i was… who this strange women standing over me was… but somehow i knew to use Alexa to call for help between the seizures. Given it was a few one right after another she got me to the ER. I was seeing things… that felt like memories but they were not mine… it sounds weird but I still see them from time to time when i close my eyes. its probably some sort of day dream or something i saw on TV but its weird… brains are funny.

I was admitted, they put me on Keppra IV, I had another seizure over the first night but after that it seemed to calm down but i think the medicine was making me dopey. they did an EEG, X-rays and an MRI… probably other stuff too but yeah… memory issues. they said everything turned out okay but said i should see a neurologist.

Now our hospital is pretty bad. I’d probably have better luck getting a correct diagnosis by going to an elementary school nurse. (filing a complaint soon(ish)). The Hospitalist let me go after all the results came back kept me on kepra for the time being, cleared me to drive and work which shocked me. My nurse fudged it and gave me an extra day off cause there was no way i could drive there at least until i got used to the meds (20miles away)

Got an appointment with a neurologist, after the initial questions my wife answered most and such… he gave me some standard tests. counting backward buy 6’s or something that i failed horribly, (which sucks because i was great at math), basic sobriety test… failed it all except touching my nose. that sort of thing.

We got a copy of my tests on CD ( our hospital sucks, but we knew it in advance so always get a copy of stuff they do ). With in 30 seconds he said under his breath something along the lines of “how did they miss that?”

fairly large black spot in my MRI that showed up on the left side, looked through some other tests and his expression went form hopeful to depressing and confused the more he looked at the scans and results. He said the report from the radiologist doesn’t come close to what he is seeing (which is why you should always get your results not just the reports). Hes sending me for an MRA to confirm ( this friday ) he said something of the effect of, just to prepare me… due to the location it likely isn’t operable. Doing so I’d loose motor functions speech and what little is left of my short term memory. He also said it could be an error in the scan or something to that effect as MRIs don’t always interpret these sort of things correctly.

Switched my medicine to Lamgtine (or something like that) which seems to be working better, and feeling better weening off the kepra, less tired and more alert… most of the time.

I also noticed since starting taking anti seizure meds my arthritis in my knees and hands is not as bad and my back hasn’t been hurting as much… I’m starting to wonder if i might not have been having issues in my sleep (or just not noticing?)

Ever since my bout with the seizures i’ve had a constant headache… I’m not sure if its because i hit my head pretty hard and probably concussed… or if its whatever is wrong in my brain. Tylonol kinda takes ‘the edge’ off… ibuprofen seems to make it worse.

I notice it becomes worse with stress and physical activity. I was chasing my daughter around for a few minutes, fell and started shaking but never lost consciousness and had a little control. Also My department of 4 has become a department of Me most of the time, and I work in IT. Stress is rough and displayed similar symptoms but i sit on my butt 80% of the time.

I don’t remember a lot of what i typed so i’ll finish here, and say thank you. If it is an AVM and not something else… I felt like i was screwed before… but now with you guys i can see a light and hope for some semblance of a normal life.

If confirmed i’m sure i’ll have a lot of other questions. things like, if i cannot drive long term, i cannot work (we have 4 or 5 locations many miles apart) and my wife driving me in every day is not a sustainable option (shes got her own health issues) that sort of thing…

thanks again!

Hey Redrage,
Welcome to the Ben’s Friends Network.
I’m sorry to say but your dealings with your hospital are not all that unusual, even some neurologists can be a little nonchalant about it all. For some people they can be having all sorts of non ending symptoms, but until someone connects all the dots the full picture can sometimes be missed.

I too have a brain condition and it took many years to actually obtain a firm diagnosis and even then there has been some heavy debate over the cause, the effect and the impacts. With each medical professional having their own interpretation and their own diagnosis, with arguments over just whose diagnosis was correct. It was like school kids answering a question in class ie ‘I’m right’… …‘No, I’m right…’ ‘…No I"M right…’ ‘…NO!! I"M RIGHT!!!’ And in the meantime I’m the one having to manage it, it ain’t fun that’s for sure.

My recommendation here would be that if you find a Dr who you can trust then stick with them, even if it’s a pcp who is willing to do any follow ups/follow throughs. Sure, get your 2nd opinions, make sure what you are being told is correct, but if you can find a dr willing to cut through all the conflicting information to find the facts, then I’d be sticking with them. It took me many years to find a good dr, he retired and I had to hunt to find another, but eventually found another one. This one’s a good advocate too and won’t just tow the medical line.

If you have questions then please do ask. I certainly don’t have all of the answers but there are many other members here and we all have differing experiences in dealing with all of this.

Merl from the Moderator Support Team

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Welcome! You’ve been dealing with this for a while. Hopefully you get some definitive answers and can develop a plan. When you look back on all the symptoms and the progression, makes one wonder why there weren’t some flags going up earlier for sure. It’s great you’re here with us, Take Care, John.

Update: had my MRA and we got the images on disk. I don’t know what i’m looking at, but my wife says she sees what he is talking about. Something about a fish hook vessel.

Mean while my symptoms are worse. I’m not sure of its the medicines or not.

I forgot how to write for about 20 minutes or so and it slowly came back to me… that happened twice in a short period of a day.

I was playing with my daughter chasing her around when i had another episode but never lost consciousness though my memory isn’t clear on what happened. I must not have fallen too hard or caught myself since no one noticed until they walked in the room but was hard enough to hurt for a day or two.

My memory still bad, especially short term where i forget where i’m at and forgetting how i got there that sort of thing… messing up words calling a tv a microwave or what have you.

i’ve had what is mostly the same headache since i was in the hospital though its gotten less and less since i’m weening of the kepra so i’m betting thats the cause or maybe its been getting better simply because all the tylonol and me getting used to it hurting all the time.

i’ve also noticed i’ve been having a harder time controling my emotions. Might be the meds… or depression as it is all rather scary.

my next appointment with him is on the 23rd i was hoping he’d clear me to drive, really doesn’t seem realistic at this point… but even if he does i probably will avoid it a while longer, at least until i find a better way to manage the stress which seems to set it off.

another update: i had my wife call the neurologists office about my meds cause i’m confused on how i should be taking the meds removing kepra completely and what not…

she mentioned somethings to them most notably this headache… they’re “rushing” me in this week instead of next. I think they also got my MRA results as well…

Hey @redrage

Welcome to AVM survivors! You are definitely going through big stuff! Honest. You’re in as deep as anyone. It does sound like getting prompt attention is a good idea, so getting seen this week sounds good.

I’m completely in line with Merl: once you find someone who is making sense and looking after you effectively, stick to them like glue.

A lot of this is a big emotional shock, so you’ll find yourself “going through the change curve” which is a phrase that means at different times you’ll experience pretty much every emotion known to man: shock, denial, disbelief, helplessness, depression, more shock, and hopefully a bit of realisation, rationalisation, recovery, new you one way or another. As you go through any of that, feel free to scream here. I’m not sure we’ll know the answers, exactly, but there will be people here who have gone through similar stuff.

Practicalities…

Keep your blood pressure low, if it is an AVM, so if you’ve not already done so, avoid things like coffee, alcohol, straining / lifting heavy things, smoking, “stress”… if that’s possible. Go really steady with exercise. Avoid ibuprofen unless you discuss it with your doctor: if you have a bleed, I think it can make the bleed less able to clot, slow down. Tylenol is widely used by people with AVMs and doesn’t have that blood-thinning effect.

Re work… maybe if you’re in IT, work can set you up to work from home rather than driving. This is the 21st century, after all. We have definitely had people in my office who became ill or infirm but because we valued the work they did, we could make it happen that they worked from home. In the UK these days there is legislation to make reasonable adjustments to work to support people with disabilities: I don’t know if there are similar provisions in the US.

Welcome!

Hope some of these thoughts help.

Very best wishes

Richard

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