Traumatic Brain Injury: Come introduce yourself

Welcome to the Traumatic Brain Injury (TBI) group on Mayo Clinic Connect.
This is a welcoming, safe place where you can meet people who know first-hand about living with a traumatic brain injury. Together we can learn from each other and share stories about challenges and triumphs, setbacks and the things that help.

Pull up a chair and connect. Why not start by introducing yourself? What is your experience? Got a question, tip or story to share?

Interested in more discussions like this? Go to the Traumatic Brain Injury (TBI) Support Group.

@amoessner

Hello all, sorry I’ve been a little slow in formally introducing myself to the group. I blame my “first time snowbird” status, having escaped to Florida for a while where I’ve taken time off and tele-worked less than usual. I’ve met many Midwesterners while here and we universally agree that breaking up winter with warmer temps and less outerwear as well as trading boots for flip flops is swell, and a luxury for which we are all grateful.

Anyway, Anne here. I’ve met everyone by phone but by way of a short recap, I’m a nurse and researcher at Mayo about to hit my 35 year anniversary, all in brain injury care, rehabilitation, and research. Which means I know some about the things you are discussing, but my vantage point differs as a provider because I haven’t “walked a mile in your shoes”. I’ve learned loads of important things from the many people with injuries I’ve interacted with over the years, as I'm already learning from you. I'd like to honor everyone's experiences and willingness to share by paying it forward and supporting each other here.

Let's use my intro to get things re-ignited. How are you doing today? What's one thing that you're grateful for today?

Jump to this post

Hi, Anne! Nice to see a face to go along with your voice!
I saw my concussion doctor and he suggested doing PT again. I’ve been having vertigo again for a bit. So I’m back to being dizzy a lot and took some baby steps back. I’m disappointed, but am trying to be positive. My lawyer called a couple of times and is sounding like he’s not as enthusiastic as he was when I first brought my case to him.
And on a lighter note, I tried to melt the wax out of candles I still had, and discovered that hot wax is slippery on glass and I was very impressed by my juggling skills. It was a mess from beginning to end. I had a lot of candles in glass containers and wanted to recycle all that glass. I just can’t smell.

REPLY
@frontrunner

I've been lurking on this site for a couple of months and thought I should try to introduce myself. My name is Jane. My TBI occurred in June 2018 while riding my bike to work. A roller skier cut me off and the next thing I knew I was being put in an ambulance. Evaluation at HCMC showed 4 skull fractures and four (small) intracranial bleeds. I was discharged about 4 days later but had to take another ambulance trip back when my sodium dropped precipitously. (Has anyone else had that happen? Apparently it happens in about one third of severe brain injury cases.) I was out again in about a week after... let's just say HCMC did not show a very good side of themselves.

Since then I've come a long way but the cognitive fatigue still knocks me for a loop. I am able to work for only about 4 hours a day, although following the advice of the Mayo professionals and taking brain breaks every hour really helps. I lost my hearing in my right ear (one of the fractures was through my inner ear) and that is more of a handicap than I imagined. But I'm coming along.

Jump to this post

Hi Frontrunner, I also had an incident with low sodium (Syndrome of inappropriate antidiuretic hormone secretion) that landed me in the hospital for a week last year. After my fall (December 2018) I was in HCMC overnight but then went to the ER at Methodist in St. Louis Park after I passed out in the bathroom. I was treated for the sodium issue at Methodist (they were terrific). Did you have hallucinations? Sorry that you suffered hearing loss. I have trouble with tinnitus and sensitivity to noise but otherwise my hearing didn't suffer too badly.

REPLY

This group and Anne have been helpful to me as well. I am also grateful for the support of my employer though this ordeal.

REPLY
@icydecember

This group and Anne have been helpful to me as well. I am also grateful for the support of my employer though this ordeal.

Jump to this post

Hi @frontrunner, so glad you emerged from lurker status to say hello and introduce yourself. As they say, better late than never. I'm glad I finally posted my intro as well. What do you do to take brain breaks? What activity or non-activity helps rest your brain?

How are you doing today? What's one thing you're grateful for today?

REPLY

Later.. my lawyer doesn’t have much hope for a good result for my lawsuit against our “Management “Company . I am really bummed. And depressed. The ambulance doesn’t keep a record if you don’t want to go with them. My Good Samaritan said he thought I had had a stroke or had fainted. The records at the ER say I had “collapsed” . None of the med files I gave to him made a bit of difference. Their lawyers are fixated on “ fainted, stroke, and collapse”. And I can’t testify because I have a brain injury. I’m beyond devastated.

REPLY

I had a PLUS experience the other day. Went to the Co-op to fill water jugs and ran into a lady I haven't seen in 3 or more years. I remembered who she was and even her name. When I said 'Hi', she looked at me and asked "Where do I know you from?" True, she is 80, so having a better memory than an 80 year old is nothing to brag about, but for me, remembering her name was huge. It's possibly my worst issue from the TBI. So I'm going to view this as a positive, especially after a second TBI and over a week of recovering from a 'Man-cold.'
Glad to hear from Jane, 'FrontRunner, and good to see positive reports. Progress, even if it is very slow, is still progress, and worth celebrating. We need all the positive we can get.

REPLY

Hi everyone – my turn to introduce myself to everyone. This is Wendy. I have been a resource facilitator with MN Brain Injury Alliance (BIA) for 12 years now. Some of you have worked with me and all of you have talked with a BIA resource facilitator. I have experience working with troubled youth and victims of domestic violence and I often think - I wish I knew then, what I know now.
I get to hear people’s stories; their struggles and successes and be part of finding resources that will help them. But more importantly, I am better at my job because people teach me how they need to be heard. Sometimes I hear from people that professionals that they meet do not always recognize their unique injury and experience. Have you had positive experiences with providers or professionals who made you feel really heard? What did they do or say to make you feel that way?

REPLY

Welcome to the group, Maggie20. I can sure relate to the vision issue. When I woke up in the hospital, I was seeing two of everything. One of them was slanted about 15 degrees. No matter how hard I tried, I could not correct this. Fortunately for me, it went away, mostly. I still see double on occasion, and I have shadows next to letters when I read. I need to use eye drops now. It is amazing how much we depend on our eyes.
I can't make any promises for your recovery, I have been amazed at our body and brain's ability to heal itself. At first, I wasn't aware of how much damage had occurred, as I went back to work within 2 weeks of the accident(I was only working half days), but as time went on I realized there were more things that I couldn't recall. But things continue to improve.
It is good to hear that you are getting help and that you are improving, even if it is a huge test of our patience. Also good to know that you are in tune with your current limitations. It is much safer for all of us, but also helps us mend faster if we don't over do it.

REPLY

Hey @hevykevy, I bet you're not the only ones with eye issues post TBI. Would you mind starting a new discussion about it?

REPLY

Hi! I’m Mike from a Minneapolis southwestern suburb. Last mid-October I was knocked down a flight of stairs and was unconscious for anywhere from 5 to ? minutes (I was alone at the time). The result (besides 3 broken ribs) was a severe concussion and subdural hematoma that bleed in 4 areas of my brain. I finally finished my hospitalization the day before Thanksgiving - when the recurring periodic bleeding finally completely stopped.

Overall, I’m doing fairly well. I had been going to physical and speech therapy regularly until we all got the Stay-At-Home order, and next week I will resume speech therapy via telemedicine. I still struggle daily with a fuzzy feeling in my head (iI often say it feels like I’ve got a head full of cotton. But that is manageable. My biggest concerns relate to my dizziness and word-finding problems.

My hopes are that through this group forum I can find out if I’m an oddball or if others have similar problems.

To clarify, my dizziness is not like the room is spinning (like I’m drunk) it more unsteady- like I’ve just stepped on the dock after hours of being at sea. Also, it’s not constant - there are good days and then there are days I can only get around by using a cane (otherwise I bounce off walls and furniture as I walk like a drunk).

So, that’s my story and I look forward to “speaking” with you folks. Oh, one other thing I should mention is that I’m 71 years old and not exactly a frail old man - I’m 6’4” and 250 pounds.

REPLY
Please sign in or register to post a reply.