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kristivila
@kristivila

Posts: 5
Joined: May 08, 2018

TBI and brain aneurysms

Posted by @kristivila, May 7, 2018

I have had two brain aneurysms, one that burst. I know I am blessed to be alive, but struggle everyday. I get depressed and my memory is toast. I look good so people don’t seem to believe that I struggle. It seems that as time goes by, I get worse. My doctor’s don’t take me seriously because I look healthy. I think that if you don’t look disabled, people have no empathy. Even my family doesn’t seem to care. I just want to give up and I am tired all the time. I am partially blind in one eye and fall over a lot. I loose everything. I sometimes forget a whole day

REPLY

Hi @kristivila,
Let me connect you with a few other members who can relate to your story about "you don't look sick". Please meet @kariulrich @kdubois and @dawnpereda.

Kristi, did the brain aneurysms happen as a result of an traumatic brain injury in your case?

Try to get some good counseling very soon. What you’re going through is very hard to deal with and you need someone to talk to who is a professional.

I can feel with you. The same thing happened to me and only my persistent complaints resulted in MRAs, where a fistula was found and I had open brain surgery within days. I do not know, what would have happened otherwise. I probably would not be here. And what caused the neurologist not to take it serious is, that I looked so well.

Thank you for sharing your experiences. I can understand having to live in such a paradox. Looking just fine on the outside, but struggling on the inside. I too, live that kind of a life and often find that people don't believe me when I tell them what its like for me. My family did a podcast on what its like to live with me. We address some of the issues you talk about. Please look it up and listen to it. My hope is that after hearing it, you won't feel so alone. Into your computer's search function type: podcast terrible thanks for asking. That should get you to the podcasts home page. Listen to episode 5 from season one. That's me and my family. I hope this helps. Please continue to share on this blog. We are here for each other.

@kristivila I am so sorry to hear you are dealing with an invisible illness! You are not alone in your struggles to find understanding and validation. I have a vascular disease, small brain aneurysms and avm's that are monitored. I have recently reconnected with some high school friends, many know I have a disease but they have no idea how it affects my daily life, nor would they understand no matter how much I explained. Don't give up! We are here! What gives you comfort? Do you have an activity or something special that you enjoy? I read a lot as an escape. More awareness needs to be made in coping with invisible illness. I have found this facebook page/blog so helpful, I hope you can find some comfort in it as I did. Our illness may not be the same, but when dealing with invisible illness we sure can relate to one another. Here is a link to PajamaDaze: https://www.pajamadaze.com or https://www.facebook.com/PajamaDaze/

@colleenyoung

Hi @kristivila,
Let me connect you with a few other members who can relate to your story about "you don't look sick". Please meet @kariulrich @kdubois and @dawnpereda.

Kristi, did the brain aneurysms happen as a result of an traumatic brain injury in your case?

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I’ve been diagnosed with a brain aneurysm in my carotid artery. My dr. is monitoring it by ordering an MRI and CT scan every 6 months. Anyone else have this issue? My mom had 2 strokes. The last one killed her.

@kariulrich

@kristivila I am so sorry to hear you are dealing with an invisible illness! You are not alone in your struggles to find understanding and validation. I have a vascular disease, small brain aneurysms and avm's that are monitored. I have recently reconnected with some high school friends, many know I have a disease but they have no idea how it affects my daily life, nor would they understand no matter how much I explained. Don't give up! We are here! What gives you comfort? Do you have an activity or something special that you enjoy? I read a lot as an escape. More awareness needs to be made in coping with invisible illness. I have found this facebook page/blog so helpful, I hope you can find some comfort in it as I did. Our illness may not be the same, but when dealing with invisible illness we sure can relate to one another. Here is a link to PajamaDaze: https://www.pajamadaze.com or https://www.facebook.com/PajamaDaze/

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Hi, I have a brain aneurism and I get an MRI and CT scan every 6 months. My mom died a few years ago from a massive stroke.

@kariulrich

@kristivila I am so sorry to hear you are dealing with an invisible illness! You are not alone in your struggles to find understanding and validation. I have a vascular disease, small brain aneurysms and avm's that are monitored. I have recently reconnected with some high school friends, many know I have a disease but they have no idea how it affects my daily life, nor would they understand no matter how much I explained. Don't give up! We are here! What gives you comfort? Do you have an activity or something special that you enjoy? I read a lot as an escape. More awareness needs to be made in coping with invisible illness. I have found this facebook page/blog so helpful, I hope you can find some comfort in it as I did. Our illness may not be the same, but when dealing with invisible illness we sure can relate to one another. Here is a link to PajamaDaze: https://www.pajamadaze.com or https://www.facebook.com/PajamaDaze/

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Hi @monicajones, how long ago did you have your aneurysm?

@kariulrich

@kristivila I am so sorry to hear you are dealing with an invisible illness! You are not alone in your struggles to find understanding and validation. I have a vascular disease, small brain aneurysms and avm's that are monitored. I have recently reconnected with some high school friends, many know I have a disease but they have no idea how it affects my daily life, nor would they understand no matter how much I explained. Don't give up! We are here! What gives you comfort? Do you have an activity or something special that you enjoy? I read a lot as an escape. More awareness needs to be made in coping with invisible illness. I have found this facebook page/blog so helpful, I hope you can find some comfort in it as I did. Our illness may not be the same, but when dealing with invisible illness we sure can relate to one another. Here is a link to PajamaDaze: https://www.pajamadaze.com or https://www.facebook.com/PajamaDaze/

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It was over 20 years ago. I have never felt like me since.

Liked by outtacloud

@kariulrich

@kristivila I am so sorry to hear you are dealing with an invisible illness! You are not alone in your struggles to find understanding and validation. I have a vascular disease, small brain aneurysms and avm's that are monitored. I have recently reconnected with some high school friends, many know I have a disease but they have no idea how it affects my daily life, nor would they understand no matter how much I explained. Don't give up! We are here! What gives you comfort? Do you have an activity or something special that you enjoy? I read a lot as an escape. More awareness needs to be made in coping with invisible illness. I have found this facebook page/blog so helpful, I hope you can find some comfort in it as I did. Our illness may not be the same, but when dealing with invisible illness we sure can relate to one another. Here is a link to PajamaDaze: https://www.pajamadaze.com or https://www.facebook.com/PajamaDaze/

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Why are they waiting to remove it?

@edda

I can feel with you. The same thing happened to me and only my persistent complaints resulted in MRAs, where a fistula was found and I had open brain surgery within days. I do not know, what would have happened otherwise. I probably would not be here. And what caused the neurologist not to take it serious is, that I looked so well.

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My aneurysms were a cause of endocarditis. I was born with a heart defect that went unnoticed. I became very ill and because I was young and looked good ,my illness was dismissed. I finally went to the ER with severe pain in my chest. I was finally given an echocardiogram. I had endocarditis and was sent home on a pic line and told I needed open heart surgery but I had to wait until the heart infection cleared up. I called my doctor one day complaining of a bad headache. He dismissed it. That night my head blew up. I had emergency Brain surgery and a MRI found one more aneurysm and I was opened up again. Three months later I had two open heart surgeries. I had another heart surgery 12 years ago and am expected to have one more. The doctor's always say " but you look so good". I have been having Thunder clap headaches. I really have lost faith in western medicine.

@kariulrich

@kristivila I am so sorry to hear you are dealing with an invisible illness! You are not alone in your struggles to find understanding and validation. I have a vascular disease, small brain aneurysms and avm's that are monitored. I have recently reconnected with some high school friends, many know I have a disease but they have no idea how it affects my daily life, nor would they understand no matter how much I explained. Don't give up! We are here! What gives you comfort? Do you have an activity or something special that you enjoy? I read a lot as an escape. More awareness needs to be made in coping with invisible illness. I have found this facebook page/blog so helpful, I hope you can find some comfort in it as I did. Our illness may not be the same, but when dealing with invisible illness we sure can relate to one another. Here is a link to PajamaDaze: https://www.pajamadaze.com or https://www.facebook.com/PajamaDaze/

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Because it’s small

@kariulrich

@kristivila I am so sorry to hear you are dealing with an invisible illness! You are not alone in your struggles to find understanding and validation. I have a vascular disease, small brain aneurysms and avm's that are monitored. I have recently reconnected with some high school friends, many know I have a disease but they have no idea how it affects my daily life, nor would they understand no matter how much I explained. Don't give up! We are here! What gives you comfort? Do you have an activity or something special that you enjoy? I read a lot as an escape. More awareness needs to be made in coping with invisible illness. I have found this facebook page/blog so helpful, I hope you can find some comfort in it as I did. Our illness may not be the same, but when dealing with invisible illness we sure can relate to one another. Here is a link to PajamaDaze: https://www.pajamadaze.com or https://www.facebook.com/PajamaDaze/

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I was diagnosed about 5 years ago. They do a CT scan and MRI every 6 months. It in my carotid artery in my brain.

@kariulrich

@kristivila I am so sorry to hear you are dealing with an invisible illness! You are not alone in your struggles to find understanding and validation. I have a vascular disease, small brain aneurysms and avm's that are monitored. I have recently reconnected with some high school friends, many know I have a disease but they have no idea how it affects my daily life, nor would they understand no matter how much I explained. Don't give up! We are here! What gives you comfort? Do you have an activity or something special that you enjoy? I read a lot as an escape. More awareness needs to be made in coping with invisible illness. I have found this facebook page/blog so helpful, I hope you can find some comfort in it as I did. Our illness may not be the same, but when dealing with invisible illness we sure can relate to one another. Here is a link to PajamaDaze: https://www.pajamadaze.com or https://www.facebook.com/PajamaDaze/

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Seems to me that it should be removed. Is there a chance of it rupturing?

Hello , dont feel alone. I'm a Veteran family young and am in shape and feel the same way as you. I just wanna give up cause everything is blamed on anxiety and I have these dejavu feelings I dont like along w anxiety . I hope you feel better wish there was something I could do to help you. My father passed away unexpectedly too yet I hear the same " you re young healthy and look great " so frustrating. Beyond it all try to find the great on everything . Let's not give up .

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