New here

Hey guys mine is on thw right side, what kind of symptoms do you present? :confused:

Hi Dulce, my daughter had headaches. She also had her AVM on the right side of her brain. She had surgery in June and it was completely removed. Best of luck to you.

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Hi, mine is right side cerebellum as well. It is not so big (1-2 cm), but located quite far in and therefore inoperable. Received GK treatment June 2015. Only symptoms I had was diziness and occasionally falling (would just completely lose control for a second or so and fall over, almost like fainting but never list consciousnes).

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Hi my son’s is on the right size small so they r planning on doing radiation treatment he lost his job due to anxiety stressful work environment he works for a call center the lights bothered his eyes his FMLA is up and they don’t do leave of absence apply for SSI got approved for that now got to try unemployment and SSD

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Hi Dulce. Welcome to the site. Mine was on the right (frontal lobe), and before its removal many years ago (today–9/28–actually), I had headaches, and was very often ill. I hope that things go well for you.

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Hi. I found out 2 weeks ago I have a left cerebral AVM. I will be 59 in December. I am asymptotic. I have had no headaches, no seizures, nothing. 20 years ago, I had swollen, painful joints on the right side of my body. No weakness, just pain and swelling. At the time, my doctor ran many tests without finding any cause. After about 4 months, I began to get better. My doctor said he was going to test me for MS, but since I was getting better, he’d see what happens. Fast forward to July. I started having muscle pain on the outside of my right leg. It started intensifying and spread all the way up to my hip with some unusual bruising. My current doctor ordered an MRI to test for MS based on my prior problem. The results:no MS but an AVM.
I saw a neurosurgeon yesterday. He wants to do an angiogram and probably gamma knife.
At this point, I am in shock. I have no problems. I have read posts here endlessly the last two days. Considering I am healthy, happy and enjoying life, I am afraid to be treated. It seems, from what I have read, that there are lasting affects from the gamma knife. I have not read that anyone else was totally asymptotic. The neuro said he didn’t think the leg pain was associated to the AVM, especially without weakness. At this point, I am more afraid of the treatment than the AVM. Has anyone else been this route? Thank you.

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After reading everything, I can’t believe how blessed I am by not having any symptoms. I feel like it’s the old adage, if it’s not broke, don’t fix it.
My husband was with me at the neuro and he does not want me to have treatment either. The neuro was very upset, pointed his finger at me and said oh, you’re one of those people. I know your kind. He would not discuss anything about the procedures.

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@lori13. wow! At 59 I don’t know what to say to you, but I understand your logic. If I could go back in time I probably go that route also. I choose preventive treatment, and now I’m on the slow recovery road. Even if the treatments go according to plan, its still Brain surgery. I think doctors minimize that part.There will be side effects and deficits in most cases. However, foregoing treatment is a gamble. All you have to do is peruse this site to see and the serious and complicated ways this thing can play out if the AVM ruptures.

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Had you had symptoms or problems?

Lori hi. I’m in a similar position to you and if you look in the New Members strand you’ll see some people encouraging me along the journey.

For me, I know I’ve got an AVM, I’ve been listening to it for a year or more, saw an ENT consultant in August, had an MRI last month and I’m still waiting just to know what on earth I’ve really got. The National Health Service in the UK is free but perhaps very slow to move.

However, other than the pulsatile tinnitus - the pulse sounding in my ear - and a strong pulse on the back of my head, I’m without any of the more scary symptoms yet. So, even when I get a result from my MRI and then a slow handover to a neurovascular consultant, it still may yet be the right thing to do not to go digging where there is no immediate issue. The risks of surgery need to be lower than the risk of doing nothing.

One thing I feel positive about the UK NHS is that I’m not paying the consultant or the surgeon, so they don’t see an opportunity to earn their next golfing holiday when I walk in the door. So beware a consultant or surgeon who sees dollar signs when you walk in.

Keep in touch

Dick,
Thank you so much for responding. I have decided I am getting a second opinion. You accurately expressed my sentiments: the risk of surgery has to be lower than the risk of doing nothing.
I occasionally hear a very faint whoosh in my left ear, when I lay down in bed at night on my left side. It is so faint, I almost can’t detect it. When I think I hear it, I roll to my back and it’s gone. I have had this all of my life. It’s nothing new and barely audible. I am very fortunate, very blessed.
Please let me know what you find out. I will definitely keep in touch.

Hi, so after it was gone were you completely well? I mean did still felt fatigued etc?

Hi, I would like to introduce myself first. I was diagnosed with a Brain AVM on the border of both lobes about 3 cm big and deeper so it’s inoperable. I had not symptoms to begin with but just headaches and constant ear pressure. I got my Gamma knife surgery done in August this year. I know it’s going to be a long battle, just want to connect with you guys to get and give support.

Thanks Selina, I hope so :slight_smile:

How are you doing now?

That’s a shame, In my case I decided to quit my job , I was working as a manager in a company with my husband and a friend, but doctor recommended zero stress and unfortunately I use to stress a lot.

I miss doing productive activities but my balance sucks as my short term memory :frowning:

I HOPE U TWO ARE OK

Thanks :slight_smile:

They are going to obliterated my avm via craniotomy, because its accessible, all the possibles procedures can scare us, its normal, At first time when they diagnosed me I also was in shock, but I also know its no other possible way to get a solution even knowing that all procedures have some kind of risk.

But beeing in support groups like this helped me a lot, knowing other cases calms me , I live in Mexico and here there are no support groups like in canada or USA and not much information about it, so if you arr living in countries where you can physically involve in support groups do it :slight_smile: hope the best for you

Hello,
I am 50 years old and also have recently been diagnosed with a “incidental” avm. No symptoms, found it after an CT scan for dizziness (from blood pressure meds). Mine is in my left frontal lobe and is small (2cm). I went to Northwestern Hospital in Chicago where they recommended a crainiotomy to remove it. I went to Mayo for a second opinion. Mayo also recommended treating it, vs doing nothing. They feel I could either do a crainiotomy or gamma knife. I decided to do the crainiotomy as they tell me the risk is relatively low vs gamma knife that may take 3-5 years to remove the AVM. My surgery is scheduled for December.

HI All. My AVM was ‘discovered’ when I was 14 and I’m 43 now. It is located in my Cerebellum and is sizeable. I have been told it is inoperable and my only treatment option is multiple embolisations and then GK. I therefore decided not to proceed. It sounds very invasive and the risks are massive. My AVM is stable, I’m not asymptomatic and most of the time I can almost forget about it and live a ‘normal life’. Although I sometimes wonder if I’m doing the right thing I am of the ‘if it ain’t broke’ variety of person. So I’m going to take my chances. Good luck to you whatever you choose.