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AVM Survivors Network

Brunei AVMers

My son who is 24, had his AVM embolised. He had 4 embolisation procedure done + had a surgery done to remove his haemorrhage after the 2nd embolisation, he has to be rested for almost 8 mnths after successful removal of the blood clot which occured due to a leak. While resting he developed seizures after seizures up till the 4th embolisation. Then his seizures starts to lessen but was control under Kepra. We spent almost a year in Singapore, and he was stable enough to be flying home on stretchers. 2 months in Brunei, he still develop seizures until the doctors changed he is on Kinogetic diet. Since the change of diet, he did not had any seizures, however maybe due to prolonged venous hypertension, he now has Brain Stem dysfunction or significant bilateral cortical damage. But when we stimulate his right foot by tickling, he showed signs of jerking. We just keep on stimulating his right ear lobes and right foot, hoping over time that he will be heal. That’s all that I can share being a parent. By the way, he had his AVM since being born premature, and was embolised at HSC Toronto at the age of 1, and maybe it’s a relapsed last year. Now he is still at the ICU Neuroscience Stroke Rehabilitation.

Haji, I’m so sorry to hear this. You’re fighting so hard, and investing so much, to do the best for your son. He is very fortunate to have devoted parents who are determined to access the best of medical care for him.
Warm regards and best wishes for your son’s healing.
Seenie from Moderator Support

Thank you, the best medicine is Parents prayers and morale support.

We are here for you when you need moral support. Please drop by and tell us how things are going.
Seenie

Hi Haji, Sorry to hear this, I hope that over time things do get better, If anything I’ve learned that the road to recovery is a long and slow road, But there are improvements very small but noticeable improvements that are made. Take care

Martin.

Hi Martin, I absolutely agree with you on the long road to recovery. Those unnoticeable improvements can only be known by parents. Thank you for the support.