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AVM Survivors Network

Anyone not got treatment after small bleed?


#1

I had a small bleed an was told there is a chance it can heal on its own…or get surgery tto be safe…has anyone not get treatment after small bleed…I’m 39 and bleed was near optical area


#2

My son was told the same thing, and four days later was rushed to hospital, based on my experience do not wait, they’ll tell you there is only 4% that won’t get worst, get it treated ASAP.

Good luck and hope everything works out well.

Cheers.


#3

It depends. However, these things are not to be chanced, so as a minimum, you need to understand why the doctor is saying his/her recommendation is to leave alone. Sometimes the risks associated with intervention are too high – but you need to know that that is the reason. Or, get a second opinion. I would say our experience on this forum is that second opinions often vary in this less well known medical condition, so are worth soliciting.


#4

Agree with Richard. I have not treated my AVM as advised that any treatment is risky for me and don’t want to damage my quality of life. But its important to hear this if it applies to you. Apart from anything else, otherwise you’ll always be wondering 'what if?)

Lulu x


#5

I had a bleed in October 2015 and was referred to a neurosurgeon. He said “I think it’s just a small bleed” and pushed me to the bottom of the pile. An angio said it was a significant bleed in the right dural area above my ear. Saw another neurosurgeon in January 2016 and he performed an embolization immediately as I was near death. He said I wouldn’t have made it another 48 hours. Who’s right? I took the opinion of the most experienced neurosurgeon and I was lucky.


#6

There were indications on my films of calcification, indications of bleeds. I wasn’t aware bleeds had occurred. As was said, don’t take chances with things like that, they have a tendency to go sideways very quickly.


#7

Hi it’s 40 years next year since my bleed and treatment wasn’t an option for me so I can only tell you my experience. After my bleed I went home and was under regular follow up as I had epilepsy. I lived a more or less normal life apart from avoiding putting up my blood pressure. I had 2 children by c section then after 20 years finally had my avm treated by gamma knife when this was offered to me. Never knew there was any treatment available to me for most of those years. So you can live a more or less normal life with an AVM after a bleed but it’s your choice.


#8

I can only speak on my experience I was told the same by a hospital and from my research it is extreamly rare for a AVM to heal itself. I went for a second opinion to a very well know surgeon and he gave me his honest opinion which was “I have done this job for over 25 years, and never seen an AVM disappear” He advised me due to a rupture I should remove it with surgery since it was easy and superficial and the gold standard to cure AVM. I will keep you in my thoughts and do not be afraid of getting more professional advise from doctors known to work with AVM patients! I wish you nothing but the best!!!


#9

Thank you everyone for sharing your experiences…hopefully I make the right decisions with this…its been difficult the first 6 month…my mental health has suffered from this tramatic experience… My dad is also dying at the time this all happened and that has also made looking after myself difficult


#10

I had a bleed and was advised that my best option was surgery. My neurosurgeon told me I was a walking time bomb, maybe not today or tomorrow, but soon. This was 9 years ago, the best decision I ever made.


#11

Same. I chose not to do treatment due to high risk either way so I decided to just take better care of myself mentally physically emotionally.


#12

This post was flagged by the community and is temporarily hidden.


#13

Thank you for the positive message… The doctors did not wanna help me until they could get paid…its the sad part of the medical world in usa…its quite ugly that they put a price on peoples lives…wish you well…


#14

My case is unique it seems. I had a small bleed 2cm by 1 cm and it affected my right lower leg and foot. Doctors did multiple angiograms and told me I have a small AVM about 5 mm in size. They did not embolism it as it was too small and did a surgery but could not remove the AVM - reason given that it is supplying blood to the brain tissue and I would lose my leg permanently if they removed it. So after 2 angios and 10 days in hospital and one brain surgery I still have the small AVM. Doctors now say I should consult Neuroradiologist and pursue Gamma Knife. I am so confused what to do now. Thinking of second opinion somewhere may be Jefferson in Philly or Columbia in NYC. What is ur opinion ?


#15

Hi. I think you’ll find others in a similar situation. It sounds like embolisation isn’t an option for you because the artery leading to your AVM has to be big enough for a catheter (a very fine tube) to reach to the AVM (and for blood to be able to flow as normal past the catheter during the operation. If even the thinnest catheter would completely fill the artery at its narrowest point, then you can’t have an embolisation as they would effectively give you a stroke by blocking off flow during the op). So, embolisation out.

Surgery sounds like it isn’t an option because they would potentially damage roo much surrounding brain tissue in getting to the point that needs isolating.

However, radiotherapy can be used to zap even the smallest vessels from outside, so no problem with the diameter of the feeding artery and no problem with chopping through brain to get to the point needed. Radiotherapy can affect a wider area than that actually targeted, so there are still risks associated with it but to my ears, it sounds like the only sensible option left.

If your AVM were too big, too deep, too near to critical brain function, then some of those things might rule out radiotherapy. However, if they are suggesting it is an option for you, i would at least discuss the likely success and risks with the doctor.

I hope this helps. Very best wishes

Richard