1. < Traumatic Brain Injury (TBI)

Does anyone else continue to get worse after a tbi?

Posted by baurigema @baurigema, Aug 4, 2024

Hello. I began having seizures back in 2011. My doctors found cortical dysplasia in my temporal lobe in 2013 and removed a section of my temporal lobe. After the surgery I had aceptic meningitis for 2 months. I understand there are side effects of having a part of you brain removed. Ever since the surgery I've been having Worsening cognitive decline, nerve pain, brain fog, memory problems and the list goes on. Every year it seems to get worse and especially it comes in waves. I've seen so many doctors and all I ever hear is I shouldn't be getting worse but there's nothing wrong with you. Anyone else continue to be getting worse after a tbi or am I just special?

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crawford | @crawford | Aug 9, 2024

I totally feel your pain. I lost my drivers licence, the big house I rented, my dog had to be put down (hip dispasia) my lover of 6 years saw me have a seizure and ditched me a few months after that. I have a degree in English and I have a problem with word retrieval. I have a bit of a hard time with spelling but I insist that I look it up in the Oxford dictionary, sometimes it sticks. For me, it's "use it or lose it". I was homeless and had to live with my cousin. Everyday he said to me, "if I were you I would kill myself, when are you going to get the fk out". I had no where to go and I live in poverty with my credit card. I am sick of my own story. Sometimes I have anger management issues but learn quickly that I am worse off after. It is truly the anger and having gone to university that propels me to keep going. I don't know how old you are but as everyone learns, getting old sucks!! In 3 days I think I will be 57. I have lived longer than my father and sister did. I think of the "olden days" when people died so young and of starvation and disease. Now the young people are dying going to fight other people's wars. I would like to play a game of Scrabble or backgammon to see where my deficits are. All my friends have moved and the couple I have left won't even drive me to the grocery store. Everything is quid pro quo and I have nothing to give. A while back, I phoned a church to see if they had meals to give out or provide shelter. The girl that answered was a btch! I had to ask her for a number 3 times she gave me because she talked too fast and I could not write it down that fast. She screamed at me, "I told you 5 times already"!! I hung up . I could not believe that someone who answers a church phone could be so awful. I thought later that I should have asked her if I could speak to a manager or supervisor. If she said no, I could have said, " Is Jesus there"? My friend and I found this very funny. So something shitty turned in to something that still makes me laugh. You have to be your own comedian. Keep on truckin my friend... we are not dead yet .

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1 reply
baurigema | @baurigema | Aug 9, 2024
In reply to @crawford "I totally feel your pain. I lost my drivers licence, the big house I rented, my..." + (show)
@crawford

I totally feel your pain. I lost my drivers licence, the big house I rented, my dog had to be put down (hip dispasia) my lover of 6 years saw me have a seizure and ditched me a few months after that. I have a degree in English and I have a problem with word retrieval. I have a bit of a hard time with spelling but I insist that I look it up in the Oxford dictionary, sometimes it sticks. For me, it's "use it or lose it". I was homeless and had to live with my cousin. Everyday he said to me, "if I were you I would kill myself, when are you going to get the fk out". I had no where to go and I live in poverty with my credit card. I am sick of my own story. Sometimes I have anger management issues but learn quickly that I am worse off after. It is truly the anger and having gone to university that propels me to keep going. I don't know how old you are but as everyone learns, getting old sucks!! In 3 days I think I will be 57. I have lived longer than my father and sister did. I think of the "olden days" when people died so young and of starvation and disease. Now the young people are dying going to fight other people's wars. I would like to play a game of Scrabble or backgammon to see where my deficits are. All my friends have moved and the couple I have left won't even drive me to the grocery store. Everything is quid pro quo and I have nothing to give. A while back, I phoned a church to see if they had meals to give out or provide shelter. The girl that answered was a btch! I had to ask her for a number 3 times she gave me because she talked too fast and I could not write it down that fast. She screamed at me, "I told you 5 times already"!! I hung up . I could not believe that someone who answers a church phone could be so awful. I thought later that I should have asked her if I could speak to a manager or supervisor. If she said no, I could have said, " Is Jesus there"? My friend and I found this very funny. So something shitty turned in to something that still makes me laugh. You have to be your own comedian. Keep on truckin my friend... we are not dead yet .

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Where do you live? Maby I can help. I'm 29. I just keep going to doctors to see if maby someone can figure out why I keep getting worse instead of staying the same but no one knows. People often ask me, how can you be so positive about all of this? I just tell them it's life. You have no control over what life throws at you, you can only control how you respond to it. The pain in life is only temporary, we're all on this ride of life together and the ride ends the same for everyone. Just gotta live life the best you can

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