Signs of a Brain Haemorrhage

[Patti8]

@Christine_O

I have had this discussion a number of times with a number of doctors and organisations. The headache…is NOT always sudden, severe or the worst you have ever had! Both of my son’s ruptures started with a normal headache. The first one developed onto other Neurological symptoms which a doctor chose to ignore and told me to take him home and put him to bed because he did NOT have this sudden, severe headache. If I had listened and not followed my gut and taken him to hospital he would have died at the age of 9. The second, again, started with a normal headache which did worsen after an hour and then vomiting started. Neither of these ruptures presented with the specific symptoms for his specific AVM that we were told to expect by his medical team. My advice to EVERYONE with an AVM is to follow your gut. No matter how many or how few symptoms you have and no matter to what degree, if you feel something is not right then get checked out. You are not wasting anyone’s time and you may just save your life.

Thank you for this info
What happened to your son?
When there is a hemorrhage how is it stopped?
Patti8

[JD12]

Hi Patti, I won’t answer for Christine but my bleed stopped with a clot in my brain around the AVM. The discussion was the need to drain, the need for surgery or the need to medicate with steroids and monitor. The clot had stopped the bleeding. I don’t remember a couple days but was conscious and coherent with little short term memory. he decision sine it had stopped was to go with a dose of steroids and see if the body cleared the clot and other “pooling” of blood in the brain. Which it did. My memory starts about day 3 after being in the hospital. If it had been bleeding when admitted they would have done a craniotomy to stop the bleeding. We are all variable for sure, but I think they most often stop due to the clot forming, in some cases surgery but time would be a factor for sure. The risks a bleed presents are significant and the results hugely variable. Take Care, John.

[Christine_O]

Thanks for that John - I hadn’t seen Patti’s question until now.
Hi Patti. Hi Patti. In Jack’s case - both of his hemorrhages stopped themselves which is what largely happens. When the vein bursts it will release blood for a couple of seconds and then seal up again. Jack’s first rupture was nearly fatal because his entire brain swelled and the flow of CSF was blocked. He had to have Neurosurgery to insert a tube to drain off excess brain fluid until the swelling of his brain passed. The blood itself just had to break up on it’s own. Jack is inoperable. The second bleed wasn’t as serious but still led to five days of observation in hospital. This past week he has had Gamma Knife radiation that will take 2-3 years to work.

[tdz103m]

I guess mine eventually clotted but they had to put a hole in my head and put in a temporary shunt so the blood would drain. A permanent shunt was put in a few days later. My AVM is currently inoperable. At this stage in my life, it’s there for good.
I had several angiographic explorations for possible embolization or radiologic solutions. The only thing that was found was another mass beyond the already known AVM.

[Tempest2]

You are absolutely right.
Hope he is ok
My first hemorrhage had headache symptom before it.
Dont ignore ANYTHING.

[Christine_O]

He’s doing ok. A large part of the AVM has been shut down but of course his risk hasn’t changed. Radiation is still quite active which is causing him some problems and some medical emergencies. The scarring from radiation is also causing active ongoing brain damage in regards to itching for no reason and spasticity down his left side. His medic alert dog has been a major help though. Not through the other side yet but results so far are good.