Living with AVM

Hello! My name is Courtney and I had a busted AVM two and a half years ago. I spent two weeks in the ICU and one year in therapy: learning how to wright, speak and walk all over again!

As positive as I try to be, these are days that I ask myself why this happened to me!

I had a successful business that I ran for years but now, I am no longer independent.

I just wanted to see if there’s anyone out there, like me!!

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Hey Courtney just letting you no had an AVM that ruptured way back in 2000 was in the hospital for two months and even after the surgery lots of therapy. A year latter they did some more scans on me found out that I had 3 blood clots in my brain because of the ruptured bleed. So 3 more surgeries. I’m in good health but to this day still need a hand because of my short term memory. Mostly with ordering my medication and paying bills. But it’s good to have a phone to set alarms and take notes on. Hope you do well with keeping schedules and learn more ways to keep going forward.

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As hard as it must be and I may never understand the pain, but remain strong and optimistic… what part of your brain was effected if you don’t mind me asking? Just curious… My cousin who is very dear to me just had an AVM rupture :-/ its been almost a month since she was last concious…

Hi Courtney! I don´t know how I will feel at your time mark, but I am also on TO and phisiotherapy for more than a year…now I´m able to do Pilates and Yoga on a gym (the burst of my avm was at the gym, I couldn´t even see people with sport clothes for a while without starting to have anxiety and feeling panic) I didn´t returned to work, I didn´t travel again, I´m not able to drive…I totally understand you…this kind of disease seems it “steels us from ourselves” that´s what I feel that happened…altought everyone look at me and see the some person …

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Hello Courtney and welcome
I had a great job and was getting a promotion then I had a massive stroke was in a coma due to five blood clots in my brain - so the pressure from the blood clots blew out some major veins and my body tried to fix it with an AVM called DAVF-
I too had to relearn everything and tried to go back to work but ended up not being able to keep getting up early and working in a stressful trading fast past job

So I started helping with a nonprofit no kill cat shelter and was asked to join their board of directors. Then a bunch of us left and we have started our own no kill cat shelter. I do all the social media, website and marketing. I will also be at the shelter once we open. I also joined our local aging commission for our county which means 1 to 2 meetings a month.

I help other nonprofits get their act together since most of them have inherited it and dont really know the laws etc.

I had my stroke at 43 and had been working summers etc sierynce I was 10 and was not used to not working. But my husband and family knew how tired I was going back to work and I was still in PT etc.

I find it very rewarding to help and to bring my skill sets to help the nonprofits.
I have met some wonderful people and it does help to have something to do that is making a difference.

You can also mentor young girls or teach a class- Just because we dont “Work” does not mean we cant add value esp considering we are survivors!

I am still in PT six years later due to another health issue that effects my joints and muscles.

I am a candidate for stem cell study in the brain and I hope that it helps my pain and weakness

Hugs
Angela

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Yes I had a AVM in Nov 2015 and I used to work 12 hours a day, I was born with a malformation in my brain I didn’t know I had. It changed my life too.

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Hi Courtney!

I had an AVM rupture at 11. I experienced the same learning to do everything all over again issues that you had to go through. This is very frustrating for me to deal with! I am struggling for independence at the moment. Never give up hope for this. We are adults, so I know your frustration again.

At 37, I still wish that things would go back to how they were before my stroke. I have found ways to cope with this by notes and by carrying a small pocket-sized notebook with a pen laid inside it that I write in. (I had to train myself to remember that I had this and to accept the fact that I needed to use it - I swallow my pride every day).

How is your short-term memory, if I may ask?

ps Cute dog :slight_smile:

Hi Courtney. Sorry, have only just seen your post. I have a large AVM in my Cerebellum. It first showed itself in 1987 when I was 14 and it caused Hydrocephalus. I remember feeling very upset and alone. But fortunately I have an amazing family which helped. The AVM itself is unruptured and I have very low blood pressure which I think helps me. But I have always been advised against treatment due to the position of it. There would be a severe risk of deficit. I really hope that you are feeling more positive today and wish you the best with any treatment.