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AVM Survivors Network

Hey everyone, I’m Steven!

Hey everyone, I’m Steven, a 21 year old psychology student here from San Francisco! I have a 3.2 cm AVM in my Right Basal Ganglia.

Where do I start? I was diagnosed February 26th 2019 by complete accident. It all started when I was working and I felt quiet off. I had put in my 2 weeks and was a little nervous so I thought it was nervousness until maybe mid shift I started noticing my left hand tingling and twitching. Suddenly I had trouble understanding a customer in front of me, then I had trouble talking. My coworker took over and I suddenly had trouble walking, I caught myself on the counter and rested. My coworkers told me to leave so I did. I was 19 at the time. I told my mom what had happened and she said I had nothing. I agreed with her but something in my gut told me to just go to the ER, so I did. There the ER docs were a little hesitant to take a CT scan of my Brain, they said the likelyhood of me having anything was slim considering I was fine when I arrived. They took it, they saw something, they took a CT with contrast and there it was, my AVM. I think this is where the doctors really messed up and triggered my Health Anxiety. They explained to me that I had an Brain AVM and that I was going to be Transferred to UCSF. My mom called my dad (Which is 100% against medicine) and he storms in and says that they’re not touching my brain. The doctor then precedes to say that I can die at any moment because they don’t know if its bleeding. I cried. I was terrified. Ironically enough, growing up, my biggest fear was having a random Stroke and dying. I was transferred to UCSF and there, they did an angiogram, an MRI and they told me I didn’t have a Bleed, but that my AVM was too deep for them to do brain surgery, that my best option was Gamma Knife Radiation.

My AVM diagnosis changed my life, but sadly in a bad way. I became extremely depressed, saddened. I’ve always been a really happy person, lifting everyone around me and making them laugh, but this diagnosis got to me. Why me I kept asking, what did I do wrong? What made things even worse is the fact that I had no support from my parents. My dad kept telling me to do nothing, that the doctors didn’t know what they were talking about and that I will be fine without treatment. He even said “I wish I had kept you home so you wouldn’t have found out about your AVM.” My mom was just worried and didn’t want anything bad to happen to me, so she kinda acted like nothing happened. I chose to go through with the Radiation Treatment. I had 2 sessions of Radiation, 1 in July 2019 and the other in November 2019. On February 26th 2020, exactly 1 year from when I was diagnosed with my Brain AVM, I was hospitalized for Cerebral Edema and then sent home with no steroids at the time. The headaches continued so they prescribed me Dexamethasone and I’ve had a terrible time with it. I hate being on steroids, my body has physical changed, I’ve lost 17 pounds, mostly muscle and bone, and I’ve gained a lot of fat. I’m nervous about the long term side effects of Dex. like Osteoporosis Considering I was already Vitamin D Deficient or Adrenal Insufficiency. My parents haven’t been very helpful either. I’ve been called an addict my to my steroids and I’ve been regretting lately getting my radiation treatment as well. One part of my AVM has shrunk around 25% and its been 9 months and thats the thing thats keeping me going at this point. The most recent part of the AVM hasn’t changed much. I hope I get off Dexamethasone relatively okay and I hope I turn out okay! I wanna do so much in life like open a free therapy clinic for the low income community here in my city!

I’m sorry this is a bit long, I’ve been alone in this for a while and I hope I’m welcomed and some of you guys can relate to me!

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welcome to the site!
a lot of good people and experiences on this site to draw from… yes an AVM diagnosis can rock your world but it doesn’t necessarily mean it’s the end of it… get all ofthe information you can, listen to your doctors then make the best decision for yourself… at the end of the day wishful thinking and ignorance doesn’t make these things go away but you have to make a decision that you’re comfortable with at the end of the day.
stay strong and best of luck!

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Hi Steven, and welcome. I had gamma knife for a left temporal AVM in November 2016, I was fortunate and required one dose and roughly 27 months later got the news of obliteration following an angiogram. I was fortunate not to experience swelling that required steroids during this time. I was on them when my AVM was found due to a bleed.

I remember being weened off in decreasing doses fairly well but things were still a little foggy for me at the time. My wife did say that while I was in the hospital an intern took me off without weening and it didn’t go well. Likely due to the swelling returning in short order and they wondered about a re-bleed until the neuro surgeon realized what had occurred.

We’ve had other members here require the steroids while the radiation is working and I recall some real challenges. Lots of questions to your team but if the swelling is bad I’m not sure of options other than the steroids.

To echo Mike, a lot of experience here and varied experience so hopefully you’ll find it beneficial. Take Care, John.

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Steven!

It’s great you found us and it is good to share. Everything the guys say is right. I think the Basal Ganglia is quite a difficult place to have an AVM – disruption there has big effects on you – so it doesn’t surprise me that you’re having quite a tough time of it.

So hang in there, know that it isn’t going to be straightforward, and take advice from your doctors rather than your dad, I think. It is really unhelpful when you have family who are disagreeing with each other and even more so when they are disagreeing with your doctor. You’re still very young but maybe this is the point you have to decide that your life is to be lived how you want to live it. The choices about whether to get treatment or not should be yours because you’ll be the person who has to live with them. (I’m not usually this excitable / inciting!)

Hang in there! And don’t fight this alone.

Have a read around for others who have their AVM in the same place. There may be info or experience you can swap with each other. Beware that we moved platforms in 2016, so stories older than 2016 are “old” and you’ll be less likely to find people still chatting because they found the new platform a bit too different to get on with. All of the stories I’ve looked at today vary from each other, so some seem to have had gamma knife, like you; some have been told “can’t touch that, it’s too dangerous to operate on”; and I’ve seen one entry suggesting that microsurgical resection is the way to go but hopefully you’ll find some common ground. Some people have a cavernous malformation in the basal ganglia – it almost seems common to have CMs there. Is there any indication from your docs of a CM? Again, you’d find folk in a similar place to you.

Welcome! I hope we can help somehow.

Very best wishes,

Richard

Hey Steven,

Pleasantries first - my brother and sister in law lived in Sacramento for 12 years - we’d made the trip from Michigan I think three times to visit them. One time was a total surprise for him on his 40th birthday. (he just turned 57) Great place to visit, I’m not sure I’d want to live there. Funny memory - when we took all the kids (5 of them) after a busy day of sight seeing - we took the cable cars about 1/2 mile from where we parked. My 4th kid was maybe 5, but the kid has always had muscles for as long as I’ve known him (he’s adopted). He fell asleep on the cable car and I could not wake him up. So, I carried him for a half hour. Someone with neck and shoulder issues carrying a 50 lb dead weight 5 year old. I felt that one the next day.

Moving on to less trivial things…

  1. Dextamethazone - I’m sure I spelled that wrong - after my brain surgery in 2018 that left me with symptoms that won’t go away and that prevent me from doing what I want to do a lot of the time. I was on some pretty hefty dex and the docs said they could see it making a difference, so i thought, “Okay, then we’ll go with it.” My neuro-surgeon’s PA said, “Dex can be a nasty drug and just make you feel, well, I’d probably say a very low grade electric shock” We know that and keep us informed if you feel like it’s too much, don’t just stop.

  2. Age - Steve - I was diagnosed with my AVM at the ripe old age of 13. We moved (my dad’s a preacher) in April of 1978 and then in November, I was diagnosed with something no one in Michigan even know what it was. We ended up going to Mayo Clinic and if you ask my Dad it was a 6 hour surgery, if you ask my Mom it as 11 hours. I have yet to find someone who is on the group who has been on the group for longer than the 42 years I have.

  3. Parents - My parents taught me a lot about how to and how not to parent a child with a long term major injury or illness. In a brief synopsis:

  • Don’t act like your kid is dying, unless he really is. They pick up on feelings and will react to those. On the flip side, if you could get someone who your folks would really open up with, dollars to donuts, I bet you’d find that the reason they want to ignore it and to not deal with it is that it literally scares them to death at the thought shortening your time here on earth. After my dad passed away (2 years ago at the age of “almost” 81, my mom said that she and Dad both feel awful that there’s nothing more that they can do to help.

On the flip side, parents who want to help too much can be a problem too. I love my Mom very dearly and she’s very lonely having spent 2 years without him. AND I’m the successor trustee for their trust (which will probably ave very little money in it when Mom passes on. My Mom has also lived her life as a preacher’s wife as someone who 'needs to be needed." So, when she can’t be there to help him, who’s the next “target?” The son who is disabled according to the Social Security department (and my own life and trying to do things. Especially because I’m spending a couple of hours a week helping her.with her finances. I’ve flat out told her, Mom, it looks like I’m going to have headaches for years and not just formonths and potentially up until God calles me at the age of 75. I like it that you care, but it’s contridictory for you to be asking for detail on the heaaches every day. I don’t neeed you to bring them up every day. if they are too much for me to do what needs to do0o, I’ll say so and then we’ll put it on to the next day.

I was talking to Richard about and we both believe her intentions are good it’s the impact that kind of sucks. What we have to do as patients, is to walk the fine line where you say, “No I can do that” or yep now works fine. And also set up an e-mail list of famiy and friends who you might want to have them know mroe… I think that I have my mom, my inlaws, my kids (ages 18 to 33) and brothers and wifes and sister and husband.

My two youngest children were adopted at the ages of 2 and 3 years old. Both of them experienced a varying type but a significant amount of trauma before they became us. There are many situations in life where you need to be consistent and repetitive because the kids need the solitude that comes fom, "Dad might not be feeling good, but he’s still dad. My youngest said, "Hey Dad, question for you…Right now your voice isn’t sounding very good. What can we do to help? That gives an opportunity to explain what your life is like and more than often creates sympathy.

I’m sure I could come up with more, but it is after 2:00 in the morning on and even these old bones don’t gettot bed very wk

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Heavy duty Steven. I often wonder about young people who find out about their/this condition. Do they get mad? Or feel cheated in some way? Dealt a bad hand? Would I have made my same life choices had I known about my avm in my 20s? Probably not. I would’ve second guessed everything. Even my gut. I hope you can find a way to work with it.

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Hi Steven and welcome to the best group of AVM-ers, you will ever need. I’m so glad you found us. We are here to support and encourage you despite what Mom & Dad say. Truth be told, they are more scared than you are. My AVM is totally different than yours, but I have an AVM just the same. I’ve had Gamma Knife Radiation twice and a small portion of the AVM is still in my Cerebellum. It’s been five-and-a-half years since my diagnosis (after a rupture) and I’m still in the fight. I’m not saying it’s easy, but this support group makes it easier. We’re here for you. Take a sip of P&P (Prayer & Patience) to steady your nerves. Again welcome.

Hello, Steven!

Having read your initial entry, I would say you are frightened (who wouldn’t be?), confused, and in need of support. You have come to a great place. It is so wonderful that this site exists.

The signs and symptoms you first exhibited at work sound like those of a stroke. I’m glad that you finally visited the ER! YOU decided to do this, despite a lack of support for this at home. All the diagnostics were warranted, given your age. Many, unfortunately, believe strokes occur only in the elderly. An AVM is a consideration in a young person with your signs and symptoms.

Are you still being followed by a neurologist/neurosurgeon at UCSF? This medical center is top rated in the field. If you are having difficulty with issues related to cultural or generational differences (parents), I would hope you would discuss this with a trusted physician/nurse practitioner. I sense that you are experiencing a great deal of anxiety balancing respect for your parents with your need to determine what is best for yourself. (I had issues like this, and I was older.). You will be the one to sign consents for treatment.

This journey is tough. It is very personal. However, there are people here who are making similar journeys. Continue to share here. :wink:

Lifeisgood

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Hi Steven,

I am 54 and learned of my AVM at 49, but I too could relate to your story. It definitely rocked my world and these days I feel something about life that I didn’t think about before the AVM diagnosis. I am doing pretty well now but there is this persistent feeling that anything can go wrong at any moment. I’m just telling you this to say that you are not alone in what you are feeling. Your story brought me to tears because I could really relate to it on so many levels. I am glad you found this site, and i know that hearing from others’ experiences will help you along the way.

Keep posting!

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Hi Steven, my name is Stephanie and I live in San Francisco too! I was diagnosed with spinal AVM in 2018 which I think is very different from brain AVM. UCSF is a great facility. I think you’re a really good writer and I also love your idea about opening a free therapy clinic in our community. I’m sorry about the negative affects that you’re going through. I can totally commiserate about family members reactions causing more stress. One of my neurologists recommended therapy which I think could be helpful, to have someone outside your circle to talk to if your insurance covers it. I try to do tai chi, yin yoga and meditation at home for stress relief. Also I try to watch comedies on tv, my favorite comedian is Jim Gaffigan. Welcome to.this group. :hugs:

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WELCOME SFD! 40 YEARS ago, when I was 18 yrs old, I found out I had an AVM. Back THEN, there was SO LITTLE info about what to do w/this problem. Just a few neurosurgeons (sp?) in our country would even think about fixing my large AVM. ( I met several neurosurgeons so I could pick which one would be right for me.) I was brave & bold, so, in 1990, I was READY to fix my AVM, because my gran mal seizures were getting worse & worse as I got older. My recovery was major, but I was one FIGHTER thru it all, & I WON! I call this my 2nd Life. I had to start over at almost everything, so I DID! I am not ‘cured’ but probably @95% cured! The medical world, NOW, must know so much MORE about AVMs that there is probably so much MORE success, w/fixing them, right? May God be w/YOU in your decisions AND your FUTURE!!! One more important thing…Keep POSITIVE & ask GOD for HELP!!!