Cerebral Spinal Venous Thrombosis

Posted by blackstarfish @blackstarfish, Sep 25, 2012

I survived this clot in the brain, although the doctors at the VA hospital had written me off. They sent me to a university hospital here in Albuquerque which had the capabilities to manage the clot in the brain - the resulting swelling, and the stroke when the pressure became to great.

I don't remember much of it. The results are odd. Right to left movement and bright light makes me sick to my stomach - unless I cover my right eye. With the patch on, everything is bearable. Conversations with a lot of people in one place is a problem - and while I was never claustrophobic before, I am now. I am also a bit more short tempered, and things often seem less "real." to me.

The VA have no answers for any of it. At least that remains a constant.

-d

Interested in more discussions like this? Go to the Stroke & Cerebrovascular Diseases Support Group.

There are no two strokes that are the same. I can tell you that with absolute certainty. Everyone is affected differently. It takes the brain a long time to heal- at least a year. Usually if symptoms persist past a year, they will be permanent. There are always residual effects of this kind of trauma to the brain. Seeing an occupational therapist may help- they can give you exercises to do that may retrain your brain.

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Depending on what area of the brain was affected you can see a variety of different effects- including personality changes, and some if the things you mentioned, like claustrophobia.

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I have been fighting for better rights & care for veterans. Know too well how you can get pushed aside, unfortunately, the treatment is just a little better with VA hospitals. They have a crisis line, but they aren't easy to deal with. As with any strike, you are on the money about the problems. Sleep reverses itself. Silent migranes from a strke causes eye problems, light unbearable, and being short ... Has to do not having control over your own body and mind. Need to mix with just a couple of "new" friends that can empathize with you and words & thoughts can go unsaid. The pain of being closed in comes from all the pain & suffering of being pushed around as a patient by health people that look like they belong in high school trying to tell you how you should feel. Tell them to go thru basics and then come back. If you go to the clinic, talk with a fellow "victims" and find a spot some of them hang at, especially not bright. It is hard to talk about feelings, shortcomings and having to explain this over and over again to people that seem not to care. I know a lMarine that also had a stroke and surgery. He is mad at himself for forgetting things, not remembering the stroke or operation, etc. he doesn't like the loneliness or emptiness that he feels when he cannot do a job he likes, or has a hard time even reading. When younger he says survival meant getting through the night with a squad. Now, survival means a totally different thing. Throwing yourself into your work sometimes works, or get a lfriend to help write out your special talent and make a handbook for others. Or make special blades for those in about the same boat, but you have to open up a bit. Not easy to do. Do you have a website? If alone, ever thought of renting out a room to a fellow Vet? Just a few thoughts. It is easier to go through such a huge life changing situation when you have someone to share or help carry each others burden. Try to find a good eye doc or neuro to explain how you can help,yourself have more control over your own life. I wish you well and would like to see your work.

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