My decision

After visiting 6 doctors and everyone had a different opinion on which treatment to follow, I decided not to do any treatment at all. That’s it. I will continue with my life. I hope you everybody will be o.k.

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It can be so confusing when specialists all have different opinions of when and how to treat AVMs. Sometimes the treatments are as scary as the avm. I can understand your decision to let it be. All of the options have risks. Wishing your avm stays calm for you to enjoy your life!

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I always told people with my decision, be it right or wrong, I was completely at peace with the decision I made. I am very happy for you to have examined the options and settled on what is best for you! Take Care, John.

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Do you have an avm in your brain?
I never knew I had an avm but at age 19, it burst and screwed my life up.
If it had burst at age 40+ I probably would not have survived.
So long as you have made an informed choice then good luck.

Tim

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Good for you. I have come to exactly the same conclusion about my AVM. For some of us treatment doesn’t offer the best odds. All the best.

Lulu

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Well,

It’s always our choice on what & how to treat something within our body

That’s why I’m glad, mine happened the way it did - it ruptured. I had no choices left, die - or try. Well, shoot - sounded fair enough to me. Lol

It worked, the shot the bastard to 100% occlusion on first try & I recovered very well from my hemorrhage/stroke

If it went any other way - well, who knows

Good luck to you! And, I mean that when I say - it’s all we got :pray:

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Good for you. I wish I had made that decision. My AVM was an incidental finding in 2014, at the ‘young’ age of 54. I was advised that due to my relatively young age that it would make sense to deal with the issue before I had a bleed. However, after numerous Angiograms over the years, 3 embolisations in 2015, TIA (or seizure) in July 16 and Gamma Knife treatment in 2016, then major Seizure (or TIA - they now don’t know) in Nov 18 when I was then diagnosed with Epilepsy, and they also identified a new Dural Fistula - I have since had many minor and major seizures ( although now being investigated for ‘blood flow’ issues, rather than Seizures) - If I had the chance to go back to 2014, knowing what I have went through and know now, I would leave the AVM and take my chances! All the best for the future!

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I found out about my AVM aged 54 and it was incidental. I had attempted surgery including a craniotomy got deaf in left ear due to surgery and they never fixed it as it was too dangerous. I could have had a stroke or worse and died. I wish I never went through it now. I’m 60 now and living my life like a normal person. I do have yearly MRI scans of my head. Wishing you all the best

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Mine ruptured at the prime age of 35. Healthy and “fine”. I almost died and wish I’d had scans prior to. I was not given a choice, but my neurosurgeon’s team (Dr. Wilson P. Daugherty - Norfolk,VA) was amazing. Perspective is everything and a positive team makes a difference. I was blessed with a fantastic doctor, but I understand it would have been great to read reviews beforehand and make a choice for surgery.

Mine saved my life. I’m so grateful! :smiling_face_with_tear:

5-Star Surgeon - Dr. Wilson P. Daugherty

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I had an AVM bleed in 2013 and again in 2018 located in the ventrical. I too have decided to just go about my life and leave it be. Sometimes if I exercise a bit too aggressively, I feel tingling in the AVM location so I know that I need to back off next time…Other than that, I am enjoying all that life has to offer and I am happy that I chose to do nothing to date. Best of luck.

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Hi ya I just wanted to ask you more about what tia is and your seizures as my daughter had a bleed at 7 years old and was treated with gamma knife and surgery but has since had seizures from the gamma knife she’s been diagnosed with epilepsy but I’m interested to no about the blood flow you was talking about my daughter has like you major seizures and also small ones some of the major ones has put her in icu they seem very complex she’s now 14 and still going though it x x

Cassie2,
I have now decided to call my medical events as ‘minor episodes’ and ‘major episodes’ as there has been conflicting diagnoses as to whether I am having a Seizure or a TIA (or a Blood Flow issue) from different doctors/consultants over the past 8 years, during which time I have had about 6 minor episodes and 5 major episodes.
A minor episode generally involves losing control of my left hand for approx 20 mins and generally feeling light headed and tired for a few hours.
A major episode generally involves losing control of my left hand, light headed, unable to speak, pins n needles in my right arm, very weak, collapsing to floor (without support), excruciating chest pain, and can last for more than 6 hours before a start to feel semi-normal. Normally it can then take over 4 weeks before I feel fit again.
I have recently been diagnosed as being Vitamin B12 deficient (due to ongoing symptoms which I have had for many years of fatigue, light headedness, balance issues, pins n needles and numbness in my limbs) and I am on B12 injections now. However, I have reviewed previous B12 test results going back to 2011 and I suspect I have been B12 deficient since then - whether that is of any relevance to my AVM and Dural Fistula issues, I have no idea, but a now asking the question of my Neurologist (note that B12 Deficiency can cause high levels of Homocysteine which has the potential to cause blood flow issues).
Hope that is of assistance.
Rafa

Cassie2,
Sorry to read of the awful time that your daughter (and you) have went through - hopefully they get thing under control soon.
One thing that I have learned over my journey is that you need to question every medical decision that is made and understand why. I have found that once a medical professional writes something down in your notes (in my case ‘seizure’), just about every other Doctor reads the Notes and bases there decisions/diagnosis on what the previous person diagnosed the issue as (mainly because in my case, by the time I got to a hospital ward, my symptoms were gone). My wife and I have always suspected that I was not having seizures but my issues were more to do with blood flow. My most recent ‘major episode’ actually happened in my Doctors surgery and so was witnessed by my GP and Nurse Practioner, who were then able to provide a written report to the Neurologist. With this detailed information, my current Neurologist is now reconsidering the seizure diagnosis that has been with me for the past 4 years.
Rafa

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Good for you knowing what is right for you.

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Hi there. Just wanted to say I’m with all of you that have decided not to pursue treatment. Its a brave decision I think but I really feel it can be the right one for some of us. I have a large cerebellar AVM and there are pretty big risks involved in treatment. I decided some time back that it just wasn’t worth the risk. I’m happy and have a great life. Long may it continue.

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