Brainstem cavernoma

[AndreaEdelman]

Got a brain stem cavernous angioma like many here. Inoperable apparently, I’m in Switzerland not the UK but we don’t have an alliance like you guys.

I wish they would give me cyberknife a version of gamma knife we got here but they are unwilling to try.

The weird symptoms are constant, balance loss, imaginary pain in my throat, nerve pain all over the right side of my skull, front and back. Weird headaches that feel different from normal ones.

Had a first bleed in 2017 that caused loss of feeling on my right side and I got sent home wish a wish and a prayer. I used cannabis to treat the pain and I made a full recovery on my own but then I had a second one in 2018 and that left me in my current state, and cannabis makes the symptoms much worse since my second bleed.

Had to stop and detox, also stopped alcohol, excess sugar, tobacco, etc. Helped for a while but it’s getting worst. I also have a glioma in my frontal lobe... just to keep things interesting.

Was wondering if anyone had the same ish symptoms...

[Jeeg]

Hi Andrea, I have a Cavernoma in my brainstem (pons, left of midline) which bled in June 2018. I was told surgery is too dangerous and offered gammaknife which I underwent in January 2019. No further bleeds yet but the symptoms are not improving, in fact I suspect they’re getting worse some days. I have dizzy spells, numbness in my right leg, weird feeling on the right side of my skull, slight balance issues at times. I do drink alcohol, avoiding excess. I’m 44.

Vincenzo

[AndreaEdelman in reply to Jeeg]

Hey Vincenzo, it sucks that gamma knife didn't help. I got all your symptoms except for the leg. Me it's my throat I can't even swallow sometimes.... it's hell to be honest and I look totally normal to most people.

[Jeeg in reply to AndreaEdelman]

Hi Andrea, I was told that gammaknife shoud reduce the risk of further bleeds so I guess time will tell whether it helped or not. My throat is fine at the moment but food tasted different for about a week after the bleed. I also look normal to most people but my life isn't the same anymore. However, I'm trying to stay positive and hoping that research and drug trials will lead to a cure soon.

Vincenzo

[AntonellaS]

Hi Andrea I have a Cavernoma in my brainstem (pons) which bled in I October 2018. I have same symptoms and more and weather conditions often affect it as well unfortunately.

[AndreaEdelman in reply to AntonellaS]

Thanks for the answer. yeah it sucks big time... I don't feel quite normal anymore...

[AntonellaS in reply to AndreaEdelman]

It's the same for me. I am not able to have my normal energy and life as before. My battery drain quickly and unpredictable and weather conditions make a sensible difference.

[Jeeg in reply to AntonellaS]

Hi Antonella, that's interesting about the weather, I guess bad weather makes it worse?

Vincenzo

[AntonellaS in reply to Jeeg]

My battery drain quickly and unpredictable and weather conditions make a sensible difference. Sunny and warm help me to endure during the day a little bit better than cold and rainy. Maybe it's just personal but surely it is for me just after my bleeding. Even if doctors prescribe medications to relax this not seem worth and the weather conditions make difference now.

[PippaMayb]

Hi Andrea, I also have a brainstem cavernoma. Diagnosed at 13 (just turned 33). I am not operable for surgery of gammaknife.

I have had multiple bleeds (literally too many to count) which has resulted in everything from migraines, pressure headaches, tremors, some paralysis, numbness & extreme pain to hot and cold (water/objects not weather), all to my right side. I also have double vision since my first bleed that has never gone. Always exhausted, balance is rubbish but I have found that cutting out tobacco has helped me massively, but stress was also a huge culprit. Over time, my symptoms do improve, or maybe I just adjust? It does suck, massively, also because how do you explain it to anyone in less than 20 minutes?!