Brain Injury: Everything Your Doctor Won't Tell You

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Please remember, we are not able to give medical or legal advice. If you have medical concerns, please consult your doctor. All posted comments are the views and opinions of the poster only.

I just wanted to say thank you for this list. Although I don't experience all of them there are many that I do. Its comforting to know I am not alone. Again thank you.
I was 21 in 1991 and I was the victim of a cerebral aneurysm near my right eye. The neurosurgeons were trying to destroy some tumoral cells on my pituitary gland and the operation went wrong because I was bleeding from my arteria. Now I am 44 I emigrated to London and I started my studies again. I've got a certificate in counselling and I am studying to become a psychologist. I volunteer and I am enjoying every instant of my life. Every day I thank God I can see the light of the sun but still in every memory there is a tiny veil of sadness because I know I cannot do things before that I really enjoyed such as swimming and going underwater, doing sport such as running for 5,000 metres or playing volleyball. My lifestyle has changed but I am married and I have a daughter, my family knows my story and they know that my life is every day a question mark even if my bleeding arteria has been closed, but are now 23 years ago. What I suggest to people having the same experience is to enjoy what you really like and including the effort and the achievements you in the present and accept your life as it is...
I had a brain injury along with a t7 Sci. Haven't driven since 07 and my life is filled with people who help me with things. I finally went home after a year and a half at the hospital. But I've gone farther than anyone ever thought I would.. I have never given up! (And never will!!)
Thank you for this article. I needed to read something on long-term TBI living, to remember ... this is the normal. (after TBI of coarse, how we measure life in the new me) I am 24 yr surviving woman alone and I so appreciate your sharing your feelings. True to the T ! Be Well ~
Yes! Yes! and OMG YES!!! THIS IS MY HEAD in a nutshell!!!!
I promise things get easier! After almost 13 yrs., I will tell you that I still fall sometimes, and I am dizzy very often, and at times the headaches are fierce.Each time I do, I am humbled all the more, I know that I am so very blessed and that my brain injury is part of God's plan for me.
I suffered a severe traumatic brain injury 15 years ago and all I can say it's a process. Try to write everything down, sort of like a journal to track your progress. At every difficulty you have, strategize a way to overcome it and practice until it becomes natural for you to do without thought process. You can't expect it to happen overnight, you just have to keep working at it and repetition will become your best friend. Just don't give up no matter how hopeless the situation might feel, just know that you're not alone in this struggle and that you can overcome the difficulties that arise as a result of your injury and just keep practicing until you perfect it!
Thank you my friend suffers from TBI some odd 30 years ago from fallling off a horse. Now she's got issues, and this article has really helped me understand, thank you so much for your article it's really enlightening to me and her.
I received a brain injury thru a car accident a few years ago. It took them almost a year and a half to confirm that I had a brain injury. I keep telling them I was having problems and they sent me to two different neurologists and they both passed me off. It wasn't until I spent a few hours with a brain specialist that my symptoms started to show up. I have problems with my balance, speech,concentration, sometimes i am standing a round a few people talking and all the sudden they all sounded like they where speaking a different language(really freaky) I thot I was going crazy. It has been horrible. Christine

This may sound strange, but I think I may of had a brain injury when I was 4 years old. My sister told me recently,that I fell off a high slide at a playground. In my days, there was no rubber or any safety under the slides, just cement. I remember screaming, picking small rocks off my face, I don't remember falling off the slide. I remember going home and crying. That is all I remember. I have been diagnosed with adhd, and PTSD. The medication really helps me focus.I still have short term memory problems, anxiety, confusion at times. The problem is I will never know if my symptoms are from the fall; I was too young to remember what my personality was like before I fell from the slid. My psychologist said it is too late now to fix the damage; the fall was so long ago. The medication I am on does help me; it has stopped the fog, I can understand conversations better, but still have trouble with my short term memory. I have learned to except it. Yes, I had trouble in school but always enjoyed school, which I find stange.

Thank you so much for sharing. It helps a lot to know I am not alone. Another one doctors don't warn you about, is not being able to feel touch, not being able to enjoy sex with the one you love. It's like I hit menopause at the age 25. Taking Maca Root is usually for older people, and it felt embarrassing for me to take it, but it works. So for anyone else out there struggling in their sex life, take Maca Root. and don't worry, cause you won't be alone. i am thankful to have a very good man who has stuck by my side and helps me get things done. It is not easy for them either when everything about us changes. But my faith is also strong and have learned so much through this journey. And no matter who is in your life, we are never alone through this.

Reading all these stories, so similar, yet so different from mine is very comforting. Before my accident (TBI) I was always praised at work ..constantly being told I am such a great worker and valuable asset to the company ..after my accident (TBI) ..I am constantly hearing others making comments about how "she's just stupid" ..."I don't think she's all there" ..even after attempting to explain I've had a brain injury and am not capable of thinking the way I used too matter how bad or much I really want to ..It's very comforting for me to know this really exists and I am not the only one going through it.

Does anyone know of any support groups out there?

I am not sure where you live, but March Of Dimes can help you find a support group.
I love you for sharing your personal wisdom! ONLY another Tbi'er can truly empathize with each and every point you make. I was shaking my head yes to each and every statement ( oh and so grateful to not have the vomit reaction). Its always so rewarding and uplifting to hear that someone else is tired or not okay most of the day. Tired from trying to function is hard and a lot of civilians (as I call the regular people) dont understand this because we "look" fine. But I appreciate you reminding me of just how awesome we are! has the state to state listings of support groups and any TBI related info. And if your state has their own brain injury association they will be linked under the BIA USA site.

I got out a sheet of paper to make notes while reading this post. I wrote down 1, 2, 6, 7, ~8, 10, 13, 17, and 18+.

The ~8 meant I have experienced the problem, but not to that extent. The 18+ meant I have experienced the problem with even more intensity. Number 7 reminded me of an experience posted in my own blog.

I am a guy with a brain injury - part of my brain died - that is a fact and i can not change that. Things are different and I have to deal with that every day. The simple act of bending over in a char to tie my shoes can be enough to get me breathing heavy. But I am a brain injury survivor. The survivor part is the silver lining. Thank you for sharing. Know that you are not alone.
I had a deer take me out while riding my harley through Wyoming. I don't remember much, but my husband, who is an EMT, said I was dead. He tried to revive me with no luck. I remember what I "saw" in my mind when I was "gone". I have never forgotten it. I decided to document it using artwork. (Not done yet, had to take a long hiatus) Either way I came back, and tho I spent a week in the hospital in Wyoming, and I have a TBI and other injuries, I am so grateful for my husband and my life. The deer didn't make it. One of his antlers broke off and they collected it and gave it to me. I keep it near my bed. I am an animal lover and the deer dying was horrifying to me. I forget a lot of things, menopause made it worse I think, but I did get back on a bike two weeks after getting out of the hospital (just sat on one) and also bought another one. I knew I had to do it again, even if I decided after the fact not to continue riding. I still have my new bike, . and I still ride. And YES, I WAS wearing a helmet at the time of my wreck! Look into an HJC helmet, it didn;t even crack!!
Thank you for your post. I know nothing about this. Important someone puts this in a booklet/book for those who are leaving the doctor or hospital after TBI.
Lisa, How wonderful that you documented your experiences and were willing to share them with others. I am a psychologist who specializes in neuropsychology in the Los Angeles area. I've worked with hundreds of women and men who have suffered from the effects of TBIs. They have shared many similar experiences and challenges with me. And many additional issues that are unique to them. One thing I often hear is, "I feel so alone and that no one really understands". No doubt your "...Guide to TBI..." is already helping on that front! Thanks for your work and all the best to you and others in your ongoing rehabilitation and adjustment!
Excellent! I am 9 weeks post injury. ..wish I read this sooner. Makes me want to start my own list. :)
I love this! Thank you thank you thank you. I felt like I was going crazy... I had so many crazy symptoms. My dr acted like I should have fully recovered already so it must just be my imagination. Well after going and seeing him about my head pain a ct scan showed brain damage. Now I know but I was having trouble dealing with it. This helps.
It's been 7 years since my life changed forever. Some days it seems like yesterday and others it seems like an eternity. I went to the hospital for one surgery and left with a craniotomy, literally a wedge of my brain cut out and finding out that I had an aneurysm while in surgery. I have seizures, nerve damage and constant headaches. Everything you say is spot on. As if you wrote about me. My husband is constantly reminding me to do things. The issues I have is we have moved and thugs are not where they were before and on my bad days I still need them to be where they once were.
I am a firefighter who was hit in the head with a ladder. I was diagnosed wrong and after about a week I was finally told I had suffered a serious TBI. I am coming up on the year anniversary of my injury and many don't understand why I am not better even thow the rest of my body is almost healed. I have felt so alone but feel better knowing that I'm not crazy. Thank you for sharing.
I hit a deer riding my Harley on Mothers Day this year wearing a half helmet. Spent a month in the hospital severe Traumatic Brain Injury. Bike was hurt so bad, as I had 115 feet to get speed down while maneuvering to miss the deer. It jumped and got in my way again. Anyway, on impact it's head hit the left of mine, broke some bones in the eye socket, titanium plates there now, bruised my brain, and caused bleeding on the brain. I was out of it and airlifted to the ER. Two weeks later to rehab and I've been in Rehab since. Can't even try driving yet. I had a mild concussion in combat from an Improvised Explosive Device explosion and was hit by a horse and knocked out just after I got home so I think maybe this is my second Traumatic Brain Injury event as I'm experiencing some of the same struggles. Anger outbursts, memory issues, forgetting how to do things I used to know how to do in electronics. long naps, oversleeping. confusion when trying to follow more than one person talking. and so on., I am thankful to God that I am alive and for the gracious medical and law enforcement responders.
I cried reading this. Everything is so confusing for me trying to help my son recover from his TBI. He was in the hospital for 78 days. He is 18. Thanks for writing this. I hope he will read it. I know it helped me. He has the hiccups constantly. Chokes on his spit and when he drinks daily. He is very tired all the time and I am so scared to push him too hard and scared not to push him hard enough. Again, thanks.
It's really easy to get overloaded. Loud talking, loud tv etc. actually causes me at least, to get horribly anxious, angry and overwhelmed and I shut down otherwise it's painful. Quiet soft stuff is good. If he gets tired let him go be quiet. it's easier for us to remove ourselves away from the overstimulation if people understand. they forget if you look normal. then they can get angry at me for just being the newer version of my old self
These comments are really insightful. My partner of 9 years was attacked, left in a coma, and suffered fractures and bleeding on the brain. He's home now and, apart from the scar and face being a different shape, outwardly there's no sign. Over time since things have calmed down I can see so many ways in which he's different. He's short-tempered, rants at me and the kids, shows me no physical affection, no personal hygiene, and barely goes out. He generally doesn't interact much in life. Just read about apathy and definitely think that's a factor though other than that he is totally closed off so I can't' see what other symptoms are causing this. I just know I'm emotionally broken, trying to piece ours, his, and the kid's lives back together. Any advice? It's literally breaking me and my once happy family. I've not a clue how to fix is all. So nice to listen to people who have and are going through it. Thanks ☺

I am so glad to have read this, my husband had a very bad fall about 2years ago and personality did a 360. We have been together for 40 years , but i could have never imagined anything even remotely like this experience. He just randomly goes off like a explosion, rage wise. , with no apparent cause. Apparently my presence triggers him. He didnt go to the dr., Wont admit that theres a problem, so theres not much i can do to help. The only thing about him that is like before is the look on the outside! He has verbally abused me until some days i can barely stand to be around him. Ive researched bi polar, npd, then one day it dawned on me that the change was after that terriable fall. This experience has totally destroyed me from the inside out, i have the very most sympthy for everyone going thru this, themselves, but the patient can seek help to some extent. It is horriable for the families to be in this situation with a person who will not even try to get help!!!! God help anyone suffering from this!!!!

I just found out that my fiancee was shot in the head while on some mission in Kabul Afghanistan. The bullet is out and he is talking but everything is slow so is his fine motor skills. They said his medulla oblongata is damaged somehow. But so far this is all I know. He is supposed to return home and retire on August 23rd. I don't know what is happening right now. I really need to talk to someone about treatment and what I need to expect.

My 27yr old son was in a motorcycle wreck on June 28th of this year. He was taken to the ER where the doctors didn’t think he would make it. They put a shunt in to drain the fluid causing pressure on his brain. He was in a coma for 24 days before he opened his eyes, we were given no hope just a wait and see attitude. After 44 days he was transferred to a LTEC where he was making small progress of squeezing hands moving his legs, he returned to hospital to have bone flap replaced which caused him to have seizures. He was now only on the ventilator at night and a trake collar during the day. The hospital sent him to a SNF that was supposed to finish weaning him off the ventilator. They put him back on the ventilator 24hrs a day gave him opioids every 6 hours and before he only got them at night to top it off he got aspiration pneumonia and had to be re-hospitalized which is where we are now. No one person here from beginning till now has given us any help. I don’t know anymore now about where or how bad the damage is there has been to treatment or therapy offered or suggestions on how to go about getting help what kinda of help or anything. I feel lost and alone with one one that will help me get my son the kind of help he needs and if something doesn’t change soon I’m gonna lose him forever. Please help...

I feel like the doctors are lying to you.
There is a new treatment but very costly : IV Exosome stem cell therapy and a ganglion block and it has treated many patients who have experienced Traumatic brain injury .