[Cxnt-]

Almost lost another pretty one, there.

[Sharon]

Originally Posted by Cxnt- ↗

Almost lost another pretty one, there.

Thank you and I love your avatar

[Sharon]

ANYONE has prolonged headaches that do not respond to ANYTHING, demand a routine CAT scan

[r0tten]

Originally Posted by Sharon. ↗

ANYONE has prolonged headaches that do not respond to ANYTHING, demand a routine CAT scan

I'm getting a referral for a neurologist in the next few days. I'll be requesting a scan and blood work and anything else they can do. It's a debilitating pain that no one takes seriously since they cant see it.

[Bastet]

Thanks Sharon for sharing this very personal topic with us One of my high school teachers had a subarachnoid hemorrhage as well. He was on a very long sick leave but eventually recovered and was able to work again. On one control visit in the hospital, they decided to strenghten the blood vessels with platinum. He was always joking that he must have the most expensive head in town

[clementine]

my best friend passed away in august this year. he was 24. :(

[clementine]

he passed away from AVM. he had over 30 surgeries in the past 5 years and essentially lived in hospital. he had a piece of his skull removed, so they could replace it with a metal thing. he got menigitis 2 times.

i wanna give you a big hug - AVM is terrible :( <3 keep fighting!

[Sharon]

Originally Posted by clementine ↗

my best friend passed away in august this year. he was 24. :(

I am so sorry to hear that clementine, that must have been so difficult to cope with. Seeing your friend suffer through such a severe injury and then sadly pass away. Poor man is no longer suffering and that's a comfort to ponder. Very sad

How was his body affected afterwards? His motor control, senses, speech, epilepsy etc? I am left with a spastic left leg and reduced sensation from my left flank to foot. Foot is all pins now as it deformed over the years due to the extremely tight spasticity.

I have muscle wastage too and memory problems. My balance is a bit wobbly so I have to use a stick. Bought a cool Leki one though lol

Was in hospital a year and learning to do everything for myself again was the most trying time I've ever experienced.

A very horrible silent condition, an unpinned grenade just lay in your head.

[clementine]

Originally Posted by Sharon. ↗

I am so sorry to hear that clementine, that must have been so difficult to cope with. Seeing your friend suffer through such a severe injury and then sadly pass away. Poor man is no longer suffering and that's a comfort to ponder. Very sad

How was his body affected afterwards? His motor control, senses, speech, epilepsy etc? I am left with a spastic left leg and reduced sensation from my left flank to foot. Foot is all pins now as it deformed over the years due to the extremely tight spasticity.

I have muscle wastage too and memory problems. My balance is a bit wobbly so I have to use a stick. Bought a cool Leki one though lol

Was in hospital a year and learning to do everything for myself again was the most trying time I've ever experienced.

A very horrible silent condition, an unpinned grenade just lay in your head.

That's the most accurate description of AVM - an unpinned grenade. I know I can't know first hand how AVM feels, the stories I've read and the things I've been told are absolutely terrible. I really feel for you, Sharon. You're a fighter and that is an inspiration.

As the years went by, my friend's memory became increasingly worse, he had a few scary episodes where one side of his body would become paralysed and he would just feel out of control - everyone who cares about him did. He also suffered from severe pins and needles and would feel off balance a lot. His life was just getting started when he noticed he had a lot of headaches, it was about 2 years in before everyone knew how serious it was. The last couple of years he spent maybe 9/12 months in hospitals - mostly in a major hospital in a city 4 hours away, so it was hard. He'd always downplay his illness until things got extremely severe where he just couldn't hide it anymore. I have a lot of regret - since he wouldn't want to burdon anyone by travelling to the hospital, he'd tell people not to go... I regret listening to him and not going anyway. The one time I did travel all that way, he was so so grateful. Man, I miss him.

Sorry for all that venting, I'm sure it's not doing anyone else but me any good. Sorry.

Anyway, please keep on keeping on.

[Shakey]

My younger brother 45 (who used to be a member on here) started having headaches about 3 years ago so he went to the doctor, got a cat scan, and was told he had glioblastoma. 17 months later he was dead.