Living With Cavernous Angioma

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Hi, it's been quite a long time since I posted in this forum. Hope everyone is doing fine.

My 15 years old boy has a cavernoma on his left temporal lobe diagnosed on 2008. Today's morning he woke up and told me he could not sleep last night cause he was very anxious and felt "weird". Since he has Hypoglicemia, we thought his blood sugar was low or something. But he told me he didn't feel as when he had low blood sugar, it was "something else", but he couldn't point out what was it.

For the last two or three weeks, he has been having pain in his right arm and behind his right knee, but I'm not sure if those symptoms have anything to do with the cavernoma. What do you think?

Even though I have read everything there is about these lesions, for some reason I feel I don't have enough information. And since here in Puerto Rico, where we live, there is only one doctor specialized in cavernoma, we don't have enough sources of information either.

Thats why I'[d like feedback regarding where in the USA we should move to so my son would find the right health care.

Thanks for any feedback. Stay well
I am certainly not a doctor, but I believe that there is a possiblity that he has had a bleed.  Can he get an MRI?
    I believe there is a large group of people with cavernomas in New Mexico and therefore knowledgable doctors. I live in Maine, but because my neurologist had trained there, he knew all about them.
If you move to the states then Phoenix Arizona would be the best location or somewhere in Arizona as you then won´t need outer state insurance for care.
St Josephs Hospital in Phoenix is an outstanding hospital and adjacent to it is the worldfamous Barrow Neurological Institute were they know all about cavernomas and other neurological ailments.
I am so sorry about your son. Maybe you should take him in to get checked. If everything is ok, it will at least give you a peace of mind.
Quote (ketogan @ July 04 2010,13:31)
If you move to the states then Phoenix Arizona would be the best location or somewhere in Arizona as you then won´t need outer state insurance for care.
St Josephs Hospital in Phoenix is an outstanding hospital and adjacent to it is the worldfamous Barrow Neurological Institute were they know all about cavernomas and other neurological ailments.

ABSOLTELY!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

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