Frontal lobe AVM chronic long terms symptoms

Hi all,

I’m new on here as some may know. This may well be covered a lot already and in some ways I hope it has been.

I have a very close friend who suffered a severe brain haemorrhage due to a golf ball sized frontal lobe AVM rupturing about 13 years ago.

When the AVM burst it she had emergency surgery following a brief period of observation and monitoring.

Over aproxinately one year of convalescing she recovered a great deal. Relearning to walk, speak and move around.

Since then she has had severe ME and has tried many varied treatments. None of which have made any measurable improvements.

My concern is that she is actually suffering the long term affects of a major brain injury and the symptoms have wrongly been identified as ME.

Her symptoms include:
Extreme fatigue
Aching pain in limbs
Vagueness
Lack of awareness of social surroundings
Anger
Highly obsessive mentality
General malaise

If anyone has any comments, experience in this area or other advice I’d appreciate anything you have to offer as this is a terrible affliction on someone who is very close to me.

Tom

Hi Tom and welcome to the group. I don't know what ME is (my apologies) but I can tell you a lot of what your friend is experiencing is common amongst those of us who have had bleeds. Fatigue is probably the most common complaint. Since our brains are now damaged they have to work harder to acccomplish the same things. Over stimulation can be exhausting to us. You friend will need lots of rest and naps.

Then anger is also common. She may need to seek a counselor qualified in treating patients with brain injuries. This could help with the obsessive problem she may have as well.

You friend is lucky to have such a caring friend as you.

Hi Tom
I am a new member too and i had my bleed a few months ago. I was lucky to get into a special rehab unit for free our on our NHS. I did meet many people there who had had bleeds too and we all had different symptoms. Some can't talk, some feel vague, some feel angry etc.

All of what your friend seems to have could be due to the bleed. Pathways cross over all over the brain and it sounds as tho a lot was damaged. As for the ME it is difficult to say. People do get misdiagnosed all the time. They should have taken account of the history of bleeds etc when they saw your friend.

Are these side effects new? Did your friend see a neurosurgeon or regular doc to get diagnosed?

One thing i am sure about is that Doctors don't really understand the weird things that happen to us after a bleed. They have to label everything for their research so sometimes confusion arises as to what is a side effect to what is something new.

I remember telling my Doctor in Rehab that i felt confused all the time. I didn't know peoples names all of a sudden that i had been saying for 8 weeks. He said it was just one of those things but i can now see that these sort of things come in waves. With me it is emotional strain, tiredness and normal brain freeze that brings on episodes in me.

Get your friend to see a neurology specialist.