TBI and brain aneurysms

Posted by kristivila @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

Hello @outtacloud

I see that this is your first post on Mayo Connect – welcome. Since you posted in TBI and brain aneurysms discussion group can we assume that you had a TBI, perhaps as a result of military experience?

If you feel comfortable sharing more, please let us know how long ago you had the TBI and what your current symptoms are and if you have had any post-TBI therapies.

Here at Connect, we all learn from each other. I look forward to hearing from you again.

Teresa

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@kristivila you are definitely not alone in your thoughts and feelings. I also have a brain injury. Mine is from a brain surgery that I learned I never needed, and it took me years to learn how to deal with "you don't look sick." TBI is a lot to deal with on its own, and when you add in factors of others not understanding or appreciating what you are dealing with, it can be very depressing.

What has helped me the most is seeing a psychologist who has extensive experience with treating patients with brain injury. My doctor does extremely well with explaining why I have the issues I have in a manner that I can understand. Based on the location of my brain injury (frontal lobe), my executive functioning is compromised, and he explained to me in normal, every day terms how this then displays in my thinking feeling, reacting, etc. For instance, when someone upsets me, or something bad happens to me, it will take me many days longer to "get over" it. My doctor explained that executive functioning stores a person's emotional teflon enabling people to let things easily bounce off of them and get over things… my teflon is now broken, so things that happen to me don't just slide away from me anymore. It takes a lot longer.

Having this doctor explains things is amazing, but he is also teaching me cognitive behavioral therapy tactics to work around my brain's issues. For instance, I used to not be able to remember a three item grocery list for only five minutes. Now, I can remember 80 percent of a grocery list 30 days later.

If at all possible, try to find a doctor with experience in working with people on cognitive behavioral therapy. CBT has helped me tremendously.

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Omg kristavila!!! I'm so glad to have found someone who knows what I am going through! I also had a brain anurism burst back in February of this year. I.C.U. For two wks and home 4 well over a month recovering before going back to work. I came out of it, thank God, with no after effects, just some short term memory loss and got on with my life. Lately I find myself anxious, especially at night! I'll lay in bed so exhausted but my mind just won't shut down! I am tired all the time and find myself increasingly depressed and as you said everybody just kind of brushes it off because I look fine, and function day by day as usual! Also just as I thought what slight short term memory loss I was experiencing was getting better and over and come w/ O feel that it is returning! Well I feel a little better knowing I'm not alone! Thanks!!!!

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It has to be hard. I’m so sorry you’re feeling this way. Try telling your family exactly what you wrote. Maybe they will better understand. I am sitting here with my husband who is in the ICU. day 3. Still much pain. Won’t eat. I’m desperately worried

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@0629

It has to be hard. I’m so sorry you’re feeling this way. Try telling your family exactly what you wrote. Maybe they will better understand. I am sitting here with my husband who is in the ICU. day 3. Still much pain. Won’t eat. I’m desperately worried

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Yes, very painfull! I couldn't move an inch without being in severe pain ! And that lasted well beyond the 2 wks in I.C.U !!! Mostly my muscle and joints from my waist down! It was unbearable!!! They said it was from the blood finally dispersing, then basically being absorbed by your body! It's defiantly a horrible experience from beginning to end but just know he s still here and there's a reason for that, whatever it may be! Thank you for your advice! I hope everything turns out well! I'm here if you want to reach out again!!!

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@0629

It has to be hard. I’m so sorry you’re feeling this way. Try telling your family exactly what you wrote. Maybe they will better understand. I am sitting here with my husband who is in the ICU. day 3. Still much pain. Won’t eat. I’m desperately worried

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My Prayers .Trust me it works.Have Full faith in Divinity and whatever God you belive.I am Hindu and was saved from almost certain death after heart attack.You may like to chant Om Om Om if Ok HE listens to Prayers.God Bless

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@0629

It has to be hard. I’m so sorry you’re feeling this way. Try telling your family exactly what you wrote. Maybe they will better understand. I am sitting here with my husband who is in the ICU. day 3. Still much pain. Won’t eat. I’m desperately worried

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Thank you for your quick response. Yes we are lucky that he is still here with us. He never gets headaches so these ate definitely doozies. He said fireworks were going off in his head. Guess he has his own 4th of July show. We will take it one day at a time as the ol saying goes. I hope you continue to gain more strength and hope moving forward. Bless you!

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@0629 and @zoe888, you both mention ICU experiences. I want to let you know about this very informative Page and Group discussion about post intensive care syndrome.

– Post Intensive Care Syndrome (PICS) https://connect.mayoclinic.org/page/pics/ Great blog post here about PICS, what it is, prevention and coping strategies
– Post-Intensive Care Syndrome (PICS) – Let's Talk https://connect.mayoclinic.org/discussion/post-intensive-care-syndrome-pics-lets-talk/ Meet others (patients and family members) who know what it is like to be or have been in ICU.

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@0629

It has to be hard. I’m so sorry you’re feeling this way. Try telling your family exactly what you wrote. Maybe they will better understand. I am sitting here with my husband who is in the ICU. day 3. Still much pain. Won’t eat. I’m desperately worried

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Day 4. Now he is getting hiccups with some stomach spasms. Still on pain meds and oxygen. On a sodium drip also. Icu my new home for now. Any suggestions w the hiccups did any if you have them?

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@0629

It has to be hard. I’m so sorry you’re feeling this way. Try telling your family exactly what you wrote. Maybe they will better understand. I am sitting here with my husband who is in the ICU. day 3. Still much pain. Won’t eat. I’m desperately worried

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@0629 Hello Laura,

I appreciate your keeping in touch. As Colleen, @colleenyoung, mentioned in her post, please take a look at the discussions regarding ICU experiences. Being in the ICU is most unique and others can identify with what you are going through.

I look forward to hearing from you again.

Teresa

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@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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Hi , I also have been diagnosed with 2 small brain aneurysms and have to be monitored every 6 months , but these are cerebral. incidental findings after I went to hospital with left sided heaviness feeling. very frightening to live with..

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I also had a medical scare while being hospitalized for an unrelated issue. CT scans exposed a small brain tumor up against the “vein of Galian”.
Almost exactly the size of a “good-n-plenty” candy.
To have a doctor come up to me and say…”has anyone ever told you that you have a brain tumor??”
Was quite eye opening. I might have had it my whole life and nobody just looked there…but they figured out it could just be a LIPOMA. I have had headaches for several years but no results to why.
So hang in there … you are NOT ALONE with scary medical issues.

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Hello @larrynauta

I see that you are new to Mayo Connect and I would like to welcome you. I appreciate your posting in this discussion. At Mayo Connect, we are not medical professionals, just patients like yourself. We are here to offer a listening ear as you work through your questions and concerns.

I can understand your concern regarding this new diagnosis of a brain tumor. It is understandable that you would find it frightening.

Is there any further investigation planned for this tumor? Do your doctors think your headaches are related to this?

Please remember that it is always your option to get a second opinion for any of your health concerns.

I hope that you continue to post regarding your concerns and any treatment that will be done. I look forward to hearing from you.

Teresa

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@0629

It has to be hard. I’m so sorry you’re feeling this way. Try telling your family exactly what you wrote. Maybe they will better understand. I am sitting here with my husband who is in the ICU. day 3. Still much pain. Won’t eat. I’m desperately worried

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@0629 Hello Laura:

It has been a few days since you last posted. Has there been any change in your husband's condition? I hope you are doing well.

Teresa

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Hi and good morning to you all,I think the best place for me to start would be at the begging "1988" this was the year that I joined the British Army,and I had just turned "19year's old"as i I'm from Glasgow I joined my own local Regiment(1st Bn RHF)and I was based in Edinburgh,I finished my basic training and then I joined my regiment(Battalion)on the" 20th August 1988" we didn't really do that much except Gaurd Duty and plenty Drill,the Battalion was just getting ready to "stand down" for Christmas and New Year holidays,then the FULL Battalion was told to assemble on the parade square and it was then we were told that a plane has crashed in the borders town of Lockerbie and that we were to get kitted u up because we were heading down there with immediate effect the date was "21st December 1988" we had little to no knowledge of what to expect,to be honest with you we all thought that it would have been a "micro light"plane that one of the rich land owners had bought himself for Christmas,because back then we had no social media or mobile phones so we were TOTALLY UNPREPARED for what we saw when we got closer(25 miles away we could all see a glow in the sky from down in the direction that our coaches were heading,but believe me being a young fresh faced boy(just the same as all the other Fusiliers)because we were a young Battalion,we grew up VERY VERY FAST over the" 3 and a half "day's and night'a that we spent in and around Lockerbie and at "21.00hrs" our Commanding officer called us to the town square and told us we'll done now go home and have a great Christmas and New Year and don't any of you dare then up late for duty,since "21st December 1988" I've NEVER been able to celebrate a Christmas OR a New Year(not even with my son as he was growing up)he fully understands now BUT even now that I've got two beautiful grandkids I lock myself away until later on on Christmas night(ABSOLUTELY NO FORM OF COUNSELLING OFFERED TO ANYBODY WHO WAS DEPLOYED TO THE LOCKERBIE DISASTER)and I'm going to end my post here,and for those who have taken your time to read it then I thank you gratefully
B 1st Bn RHF

Liked by lilacs1978

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