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AVM Survivors Network

Fellow Singaporeans AVM survivors

#21

Hi, fellow members

My daughter was diagnosed with an AVM in her right frontal lobe in Dec 2015.

It was an incidental discovery from her MRI scan to check the cause of her double vision and not from her constant headaches; which she has been having since the age of 6 but somehow, did not raise any red flag in us to check the cause.

We have consulted a few doctors on her condition and treatment options.
All except 1 of the neurosurgeons suggested SRS (Stereotactic Radiosurgery) rather than surgery due to the risks (of paralysis) associated with surgery.

Due to the size of her AVM (31mm), we were told that the success of complete obliteration is about 50%.
Besides the risks associated with SRS, during the 2-3 years of monitoring, her constant headaches and risks of rupture would also remain.

We were advised to explore and evaluate the risks associated with surgery instead.

Hence, we are in a dilemma as to which approach and option to take.

Appreciate any suggestions or experiential sharings.
Currently, other than the constant headaches, my daughter does not have any fits, rupture or weakness in her limb.

#22

Hi ! I m a Malaysian, 65 yrs old . Had an avm 5 years ago . Have been well all along until a few weeks ago when I was in U.K. …had a seizure !! First one . Came back and seen my neuro surgeon so going for MRI n full tests tomorrow . We should keep in touch and talk about it

#23

Hi arlene

You mentioned you had an AVM 5 yrs ago. Without any treatment or already treated?

#24

I have scalp avm too. I am from Myanmar. I worked in Singapore before as an IT specialist. but now I am back in Myanmar. I was thinking to come to singapore again to see a Singaporean doctor. I thought they are advanced. no? I tried to remove my avm 15 years ago in Myanmar. It was quite a success. but now it regrow back slowly over the years. I thought in singapore they could at least reduce my avm without making another risky surgical operation like what I did 15 years ago.

#25

Hi Glad

How are you doing now ?
Like you Into had Advanced Spinal Surgery for spinal AVM.
After nearly two years I am able to walk a little better but still have problems.

Best Wishes
Karthik