Adult Life after a Traumatic Brain Injury (TBI)

Posted by dawnpereda @dawnpereda, Sep 27, 2017

Hi, My name is Dawn and I am an RN. Just over two years ago I received a work related injury. This injury has left me with a traumatic brain injury (TBI). Even though two years have passed, I still suffer with lingering tbi symptoms. I have some issues with memory. Some things I remember with no problems, other things I just don’t remember and I can’t explain why… I also suffer with issues related to mood dis-regulation. I can be angry at times and not understand why or end up having explosive outbursts. This has greatly impacted my life. I still work but no longer with patients. Also, this has been a huge turn around for my family. I’m no longer the mom who has everything under control. I used to work full time, manage my kids’ schedules, pay household bills, and keep my house clean. Now I struggle to remember to brush my hair before leaving for work. My husband pays the bills and my kids write their schedules on a large calendar (that hangs in our dining room) so I can visually be reminded where they are and what they are doing. I am a “new” me and I never would have imagined this journey for myself.

I know there are things out there for youth that suffer from concussion/tbi, but I don’t always find a lot of discussion/support for adults, like myself. I get up every day and work to live my life to its fullest. If you would like to know more about my life and journey, you can listen to a podcast that I did with my family. Its called “Terrible, Thanks For Asking”. We’re season 1, episode 5. Its brutally honest. If any of this rings true to your life please join this discussion with me. Thanks for your time!

@becsbuddy

@dawnpereda I love your statement “day by day, it’s a new path. Keep looking forward”. If you’re OK, I might write it out and post it around my house!

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You honor me! Thank you for appreciating my words. I have two teenagers and find that my words often fall of deaf ears!!!
Dawn

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Thank you for sharing your story. I have a son that has a TBI, since the age of 15.He is now 31. He is frustrated, I am frustrated, and no one in the family wants to deal with his outburst and threats, controllable or noncontrollable. My biggest concern is where will he go when I am gone?

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@etadams

Thank you for sharing your story. I have a son that has a TBI, since the age of 15.He is now 31. He is frustrated, I am frustrated, and no one in the family wants to deal with his outburst and threats, controllable or noncontrollable. My biggest concern is where will he go when I am gone?

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Hi, @etadams, and welcome to Mayo Clinic Connect. So understandable you'd feel frustrated, and your son, as well.

I'd like to invite some of the other members in this discussion, like @dawnpereda @treyaj @becsbuddy @hopeful33250 @david33 @lrbrush @lakelifelady and others to offer any thoughts or suggestions related to your son's outbursts and threats and also your biggest concern of where he will go when you are gone.

What kind of living arrangement would you ideally like to see for your son, someday when you are gone, etadams?

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@etadams

Thank you for sharing your story. I have a son that has a TBI, since the age of 15.He is now 31. He is frustrated, I am frustrated, and no one in the family wants to deal with his outburst and threats, controllable or noncontrollable. My biggest concern is where will he go when I am gone?

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Hi there and welcome!
I'm so glad you're sharing your journey with us!! You are not alone. I know that where we are located, they have group homes for men who have suffered/are living with a brain injury. These are professionals who know how to deal with those behaviors while trying to give the highest quality of life possible. Also, have you looked into any kind of an outpatient treatment situation? Those lingering symptoms can be so self defeating for the tbi sufferer, and equally as painful for the family. Treatment options are always evolving and perhaps there is something out there that could be of help. Lastly, has your son had a recent physical? The reason I mention this is that as we age or bodies change and perhaps another disease process is aggravating TBI symptoms. Just some ideas. Please continue to reach out. I hope you will find some comfort on this site. Please listen to the podcast listed in my initial posting. Perhaps it will also give you some comfort. Best to you and your son.

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@etadams

Thank you for sharing your story. I have a son that has a TBI, since the age of 15.He is now 31. He is frustrated, I am frustrated, and no one in the family wants to deal with his outburst and threats, controllable or noncontrollable. My biggest concern is where will he go when I am gone?

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Hi, @etadams – just wanted to reach out and see how things are going this week with your son and the outbursts and threats you mentioned with his TBI?

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I have a tbi and too suffered from emotional outbursts. They seemed to be out of my control. I would try not to have them but it seemed impossible. There is a tremendous amount of frustration when it feels like your whole life has been taken away from you and for me it truly was. I share your challenge of living with a disabled adult and caring for them. Although he has a different diagnosis the behavior is the same. Because he cannot control himself I have had to establish safe zones for myself . I have a lock on my bedroom which really helps. He can be destructive and steal my things etc. I have found I also have to leave. Yesterday I had to leave for 6 hours. While it is not intention the behavior is abusive. Without boundaries I ithad triggered former PTSD. So take care of yourself. I need to remind myself it usually has nothing to do with me but he will accuse me a lot for causing his outbursts. I am with you on this and know you are not alone
Sue

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@etadams

Thank you for sharing your story. I have a son that has a TBI, since the age of 15.He is now 31. He is frustrated, I am frustrated, and no one in the family wants to deal with his outburst and threats, controllable or noncontrollable. My biggest concern is where will he go when I am gone?

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@etadams I can certainly understand your frustration. My son was a real problem from the day he was born. I was frustrated, sad, and scared. Like he was angry at the world!
Do you have a center for people with disabilities in your area? Your library should have a list of resources. They can help you work thru your plans for his future. Maybe even help him move now when he is young enough to meet and participate with others. And you can get some semblance of your life back.
I really wish you luck. You’ve been on a long, hard road. Becky

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@oceanfun1

I have a tbi and too suffered from emotional outbursts. They seemed to be out of my control. I would try not to have them but it seemed impossible. There is a tremendous amount of frustration when it feels like your whole life has been taken away from you and for me it truly was. I share your challenge of living with a disabled adult and caring for them. Although he has a different diagnosis the behavior is the same. Because he cannot control himself I have had to establish safe zones for myself . I have a lock on my bedroom which really helps. He can be destructive and steal my things etc. I have found I also have to leave. Yesterday I had to leave for 6 hours. While it is not intention the behavior is abusive. Without boundaries I ithad triggered former PTSD. So take care of yourself. I need to remind myself it usually has nothing to do with me but he will accuse me a lot for causing his outbursts. I am with you on this and know you are not alone
Sue

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Thank you for sharing your experiences. I can't even imagine how hard this would be to live through in your life. By sharing, I think we can find comfort in one another. We know that we are not alone in our struggles.
Dawn

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@becsbuddy

@etadams I can certainly understand your frustration. My son was a real problem from the day he was born. I was frustrated, sad, and scared. Like he was angry at the world!
Do you have a center for people with disabilities in your area? Your library should have a list of resources. They can help you work thru your plans for his future. Maybe even help him move now when he is young enough to meet and participate with others. And you can get some semblance of your life back.
I really wish you luck. You’ve been on a long, hard road. Becky

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Thank you for sharing your ideas. The library is always a good resource. I wonder if social services would know of any programs also? I think it's a wonderful benefit that we can support one another and share ideas.
Dawn

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Does anyone know if an Arachnoid Cyst from a TBI will disappear gradually?

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@neet

Does anyone know if an Arachnoid Cyst from a TBI will disappear gradually?

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Hi, @neet – welcome to Mayo Clinic Connect. Just for a little more background so members can be helpful to you, will you share a little of your (or your loved one's) story with traumatic brain injury (TBI)? When was the arachnoid cyst discovered?

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@lisalucier

Hi, @neet – welcome to Mayo Clinic Connect. Just for a little more background so members can be helpful to you, will you share a little of your (or your loved one's) story with traumatic brain injury (TBI)? When was the arachnoid cyst discovered?

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I had a TBI last year June 24th. Multiple skull fractures and bleeds. Loss my ability to smell. That has been more depressing than the physical injuries. I had a MRI in May. That is when the arachnoid cyst was seen. It had not been noted on CT scans previously. I also have MS. This has been a rough year. I just need to know more about the cyst. Can not find a lot on on internet about those acquired from head injury. Thanks

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@neet

I had a TBI last year June 24th. Multiple skull fractures and bleeds. Loss my ability to smell. That has been more depressing than the physical injuries. I had a MRI in May. That is when the arachnoid cyst was seen. It had not been noted on CT scans previously. I also have MS. This has been a rough year. I just need to know more about the cyst. Can not find a lot on on internet about those acquired from head injury. Thanks

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Thanks for the additional information, @neet. I moved your discussion and combined it with this discussion, "Adult Life After a TBI." I did this so you could meet members here who've experienced TBI in themselves or a loved one, like @dawnpereda @lakelifelady @oceanfun1 @etadams @david33 @treyaj. I'd also like you to meet @johnbishop. Hoping they can provide some support as you continue with your recovery from the TBI last June with the fractures, bleeds and loss of smell, then the arachnoid cyst that was seen on MRI in May.

You also may be interested in looking at this Connect discussion on arachnoid cyst https://connect.mayoclinic.org/discussion/arachnoid-cyst.

Have you experienced symptoms from the arachnoid cyst, @neet?

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Hi @neet, I would like to add my welcome to Connect along with @lisalucier and other members. I did find a few articles on head injuries and arachnoid cysts but I'm not sure if you've seen them or if they are helpful.

PubMed – Sport-related structural brain injury associated with arachnoid cysts: a systematic review and quantitative analysis.
https://www.ncbi.nlm.nih.gov/pubmed/27032926

Haemorrhage into an arachnoid cyst: a serious complication of minor head trauma
https://emj.bmj.com/content/19/4/365

National Organization for Rare Disorders – Arachnoid Cysts
https://rarediseases.org/rare-diseases/arachnoid-cysts/

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@lisalucier

Thanks for the additional information, @neet. I moved your discussion and combined it with this discussion, "Adult Life After a TBI." I did this so you could meet members here who've experienced TBI in themselves or a loved one, like @dawnpereda @lakelifelady @oceanfun1 @etadams @david33 @treyaj. I'd also like you to meet @johnbishop. Hoping they can provide some support as you continue with your recovery from the TBI last June with the fractures, bleeds and loss of smell, then the arachnoid cyst that was seen on MRI in May.

You also may be interested in looking at this Connect discussion on arachnoid cyst https://connect.mayoclinic.org/discussion/arachnoid-cyst.

Have you experienced symptoms from the arachnoid cyst, @neet?

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I don’t know if my symptoms are from the TBI or the cyst

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