I'm at the ER again since my functions got even worse today. My MRI was faxed over to the doctor here and she told me there is lots of left over blood and damage to the left frontal lobe. She said unfortunately that's a very important part of the brain and this is something I'm stuck with for the rest of my life.

I hate my life. I don't want to live like this anymore.

Why is this happening now? Why was I doing at 89% healed and now I'm practically a vegetable? This is ridiculous.

If it doesn't get better in a week I'm gonna end my suffering. This is only going to get worse as I get older. So what's the point?

Nick,

That sounds like a horrible and thoughtless thing for your doctor to say, particularly if it was not accompanied by any helpful advice. Did this doctor give you any referrals or advice?

I would not base all your future hopes on the claims of one doctor, especially since there are so many bad doctors out there. You need to get some more feedback on this from different doctors--ones who specialize in concussions and TBIs.

Do not lose hope, my friend. There has to be someone else you can see who has more detailed knowledge of this condition, and who can offer you some more constructive advice.

Pete

Hey,

I understand your frustration. Many of us feel that can't go on like this. I used to be a confident, athletic and adventurous individual. I now have no job, live in my parents basement and feel like I have no direction in my life.

It's always been a rollercoaster. Some days are bad. Some weeks are bad. But at some point everything has seemed to get better...just very slowly. Hang in there man.

We can't ask to be delt a new hand, but we can re-arrange the hand we've been delt. Re-arrange it. One thing is for sure, you're only delt one hand so you must not throw it away. The greatest gift you can give your son is the knowledge and courage of being strong during difficult times.

Hang in there...

That sounds like an incredibly frustrating experience.

However, if you got to the point of feeling 89% before, there must be a chance you can get there again (maybe even better).

Be good to yourself.

Hi,
I had contusions like you in both frontal and temporal lobe and has permanent brain softening. I didn't have any blood clots but sure there is some damage.

I had the same feeling 1 year ago and even wrote all kinds of wills (do not resuscitate etc.,). Didn't have too much money but whatever I have goes to good cause and charity.

I didn't tell my family or friends of course or I end in some mental institute I guess. But I didn't go through the plan. I don't think I will ever because some one asked me do you know where you end up? May be worse than what I am in. I don't know.

I had a setback 2 weeks ago (is this set back season or what)? I was about to faint while I was driving and ended up in ER. I had severe pain too this time- all over from top to bottom. Thought I had a stroke. Took a CT scan which came out fine. They gave me toradol which did nothing. My ER doctor (great ER doc) wants to try dilauded and explained why. Just to break the pain cycle and also find out pain is the main culprit for my symptoms. And she was right. First time ever I felt relief after close to 3 years.

So this happened after close to 3 years after consulting very many specialists, therapists etc.,. Some Neurologists told me to live with it and it is as good as it gets. But now I am back to Neurologist, therapy etc., Don't give up just because one Neurosurgeon said something very un-compassionate.

My journey is not over and still a long journey. Like greenfrog said you felt better in the past and you will get there. But don't put a time frame. It doesn't work that way and set backs seems like something we have to be ready for.

I know I cannot completely relate what you feel but keep up your spirit.

Nick,

Nitro made an excellent point. If this is going to be a long term condition, there are still lots of things you can do. Finding the help you need to become stable will be the first point. This doctor's observation is a start to becoming stable. A NeuroPsych in combination with a Physiatrist, Neuro, Occupational Therapist, maybe a Speech Therapist, can help you establish a stability that can last.

Getting your Social Security Disability approved will give you a stable income and hopefully a monthly benefit for Caleb. With this, you can start some long term planning and goals.

You will be able to get stabilized. It will just take some time for the issues in your brain to resolve.

Nick, I know a young man who lives with only half of his brain. He has a hemispherectomy where the neurosurgeon had to remove one hemisphere ( one half ) of his brain that was diseased with unresponsive epilepsy. It is a rare situation but allows the patient to live successful lives.

He is doing quite well and has been successfully living on his own for almost 10 years. He is a just few years older than you.

Have you found a brain injury support group yet? It will be very helpful to connect with people who are succeeding with symptoms like yours.

Here is a link for you to check out http://www.ndalc.org/index_files/Page999.htm

It has many links and resources that will benefit you.

Has any doctor suggested a case worker/manager for you? A good neuro-rehab case manager would be a great asset in your recovery.

I hope you can have a restful eventing/

My best to you.

Thanks everyone for your kind words and encouragement.

I'm no better than I was earlier. However, my son's mother picked my son up and is going to keep him for a few days. I'm really hoping after a few days of strict rest that i'll be rewarded with some improvement.

Mark, I'm going to look in to getting help from the types of doctors you suggested.

I'll look into brain injury support groups as well, tomorrow.

Thanks.

Wow, somebody living with half a brain? That's amazing. How does he get by? What does he struggle with?

Not sure what you meant by case manager. Case manager for what???

Sorry I'm just having a hard time understanding right now. I had to have a nurse help me fill out paperwork.because it was confusing.

Thanks again, everyone, for your kindness.

Nick

Definetely go to brain injury support group!

Well you will get better, you will make a comeback, you maybe wont be never 100% again but you should be at least 95%.

You are not the only one, i hate to be stuck in room every day, kingdom of boredom here....im trying to stay positive all the time and think good things, even though my head was used as a football by 6 random guys iv never met in my life....

Heres mine, aint hematoma but still....

http://imageshack.us/photo/my-images/685/96430231.jpg/

ur not alone

Nick,

A case manager is a person who coordinates you care among the various specialties. Some times, they are social workers. The best are Registered Nurses. I have a niece who is an RN and is finishing a Master degree in Case Management.

They can help you through the maze of forms and people.

There are numerous people in the world who have undergone hemispherectomies. One of the pioneers was a Neuro Surgeon named Ben Carson. He was determined to help patients who could not live with the seizures they experienced. Intractable seizures can slowly damage a brain until the patient dies.

Here is a link to the Hemispherectomy Foundation. http://hemifoundation.intuitwebsites.com/stories.html

Now, the stories there are a testament to perseverance and love of life.

How would I go about getting a case manager?

Do you mean for like Welfare or SSI?

I have a history of drug abuse. At least 5 years of pretty much constant drug use. So, not only am I recovering from brain trauma...I'm recovering from a lengthy run with drugs. It sucks...if I knew this was going to happen to me, I would have never picked up the habit. Its a good thing it happened 4 and a half years after quitting drugs or I'd probably be a complete vegetable right now.

I'm still shocked that there is people out there that are living with half a brain. That's amazing to me. I wonder how they function and get by in life. I'm suffering with just some damage to my left frontal lobe...its torture. I could only imagine what those people are going through.

Before this week, I was functioning at still a pretty low level but I felt I'd still be able to hold down a relationship. Right now, I feel as if I'm going to die alone because I've lost my ability to work my magic with the ladies. I'll never find someone that would wanna be with me like this.

Oh, BTW, if its not one thing, its another. Yesterday my mom got news that we were being evicted. We have to be out by the end of this month...because of something my sister's boyfriend did in the apartment complex. Wonderful. Just what I need right now...the stress of moving.

I'm wondering if laying in bed all day is helping me at all. I understand that I need rest...so I'm resting, but its not making me feel any better. Is there something else I should be doing? Should I download some brain training games to start re-routing my brain? I'm just scared to do anything...you know, before this week I really went for it. I tried to get back out there and live my life. I was punished with worse than I've ever been cognitive functions ...that haven't got any better in a week.

I just want to crawl under my blanket into the fetal position and just die.

Thanks for the kind words, everyone.

Nick