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Anyone please help..... :-(
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Anyone please help..... :-(

My nephew Marco 26 years old, had an AVM bleed located at the cerebellum area on November 6 08.  He fell unconscious in the ambulance on the way to the hospital.  He was then operated on and now the AVM is cleared.

Marco was in a coma and opened his eyes for the first time on November 11 08.  To date Marco is making steady but slow progress.  He can now answer yes or no by nodding or shaking his head.  He can do thumb up with his left hand.  He attempted to wave goodbye to a visitor by lifting his front part of the left arm up 90 degrees.  He is starting to move his fingers a little bit on his right hand.  There is also little movements on his left toes but not the right as yet.  Marco's memory, intelligence and sense of humour are there, because he can recognise people and even smiled when one of the doctors cracked a joke.

In the last couple of weeks he tried to say "hello" to friends but of cause that's not clear as yet, so I believe speech is coming along.  Marco is still wearing a mini trachea but hopefully it's coming out by the end of this week.  Marco's biggest enemy now is his fatigue problem, he seems to be sleeping a lot even during the day.  He is constantly having body temperature and whenever he gets that he is sleeping all day.  Marco is still in hospital (it's been 4 months), one rehab will not accept him because he is not advanced enough and another rehab will but not until May.

Is it normal that patients has this sort of injury (in the cerebellum) they tends to need more rest to recuperate?   Marco is still sleeping a lot day time now 4 months post injury.  Is it normal?  Can I say this is a good sign that he sleeps a lot because the brain still needs recovery rather than awake all day and not being able to response to any thing at all?  

IIt seems to us that his control of movements are intact it's just that he needs lots of energy and fully conscious to do what he wants to do.

Because he can sometimes move his fingers and toes on command does that mean that he will be fully functional again but it's just a matter of time?  and how long does it usually take for someone to start moving his fingers till being able to walk again?

Your feed back on all these questions would be very much appreciated as we are a very close family and I'm loosing sleep over Marco's tragic illness.

Tania
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Dear Tania,
I can totally understand all your frustration.It's to be expected with such an event.I had an AVM bleed in my brainstem, January 8, 2000. I was 23.I had Gamma-knife since mine could not be operated on because of its location. It's really great Marco has such a wonderful Aunt and close family.Speaking from experience it means a lot.

I'm not a doctor so I can't say whether Marco sleeping so much is "normal".I can't say any bleed is ever the same, that I've heard about anyway.I know I slept a lot at first because of the trauma to the brain and body and also because the simplest thing like laughing or raising your hand up a little is so hard physically and mentally.To this day I've always remebered one thing a doctor told me, it's like being born all over again.Things have to be relearned as if you've never done it before.Sometimes the brain kicks in and says hey I can do this and sometimes better than before and there's these things you know in your head somewhere you've done it before so you should be able to do it but parts of the body are weird and different and you have to keep trying over and over again and one day (maybe weeks or even years) it'll happen.

Basically there is no set time on anything and if any doctor tells him that after a certain time he won't be able to do something get another doctor.One thing I know is that things happen in there own time and sometimes it takes longer for things than others.Take me for instance 9 years post bleed, not walking yet but will one day.Then I know of others worse off than me who walked right after it happend. You just never know.

Are they doing any sort of rehab in the hospital?  If not, when your there ask him something simple he wants to.do.As simple as moving his hand or foot up and down or trying to say one word over and over again.  Also read up on his issues and tell him stories of what you've read other people have or have not accomplished for whatever reason.As for an actual rehab place if May is the only option do it and until then talk to someone there and find out how you and the rest of the family can start the rehab process.My family could probably be doctors and rehab specialist themselves.(The area we live in and other reasons made it a family project.)

I know I have went on and on about things not really answering your questions but there are no clear cut answers.  It gets so frustrating you just want to scream (do it, it's good therapy for both him and you.)

Just so you know, the information on the computer has helped me learn so much use it like you are.  And when Marco feels up to it he should as well.  

Sorry for not being more of a help, my only words of wisdom are "No matter what, don't stop."

Jaime
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