I'm glad for the new forum. I think one of the other problems PCS and MTBI patient's have that frustrates their recovery is they cannot organize their thoughts enough to be advocates for themselves. I am a parent of a PCS 16 year old and he frequently is unable to articulate his symptoms and he used to say he didn't realize he had a headache until hours later and then needed to be told to take medicine. How sad! It still brings tears to my eyes. He is much better and has so much more mental stamina to his day. I caught him running across a field, showing off when there were girls around the other day and yelled at him to stop. He felt good and impulsively ran while playing frisbe. I guess this is good. We will gradually do schoolwork this summer and are planning to have him start as a Junior with his peers. He is reading and listening in class with no symptoms. He wants to run cross country next fall and I am going to do everything in my power to not have him wrestle again!! He still talks about it and i do not have the heart to depress him now. God help me fight that battle. Hugs, best wishes and lots of hope to all you PCS sufferers. You are the heroes and you will get better. Stay on course and be positive. Alot of support is coming your way. Check out this website and new video. www.thehiddenepidemic.com it is very informative.

Hi Nancy,
It's good to hear your son is making such good recovery again. It's a tough battle especially for a young person still in school as he is. I wish him all the best. Thankyou very much for the website. I'll check it out. We had a few other posters over in Child Neurology I think. I often wonder how their children are doing as well. I'm still in a bit of a blur, but it's over 2 years now and I'm finally getting to the stage where I can walk around without feeling dizzy all the time.

take care there,
Lara

Edited to add after I read the site.
Nancy did you get a chance to read the other post I made about TBI and Endocrine issues? The article I just read on the site you gave talks about depression and suicidal thinking after PCS and it really makes me wonder even more about those Endocrine issues.
TBI and Endocrine Issues Post

Edited again... Cancel that last part, Nancy. I just checked the thread more carefully and see you have seen it. That's good!

Lara,
Thanks for comments and support. Sam had his pituitary gland function checked with some bloodwork and other hormone levels were also checked. He had normal results. His serum 100 beta protein was on the normal/high side. He also had an MRI which did not reveal anything abnormal. He is in the classic PCS boat that is taking it's own time to clear. This summer he will start school stuff if symptom free at next appt.
Nancy

I am also glad to see a forum dedicated to TBI/PCS. Listening to first-hand experience in the forums is a great source of info. Google can only take you so far. Hope everyone is getting better (slowly, I'm sure). I like hearing updates from people as it gives everyone hope and helps them stay positive. As for me, I started an light exercise program about a month ago and it has helped with some of my symptoms, like depression. I still don't feel quite right - I feel dizzy and confused sometimes, but its still progress. I feel better if I am not on the computer all day and doing light physical activity like walking around, cleaning the house, etc, but I make my living doing computer work and its not possible for me to take alot of time off right now. Gotta pay the bills :-) The symptoms are not terrible now and I can live with them. I just wish I was able to exercise and lift weights like I used to. Oh well... Best luck to everyone out there with brain injuries.

Hi yannimac, good to meet you!

I'm still having dizzy spells after more than 2 years but just lately it's not been so bad and now I'm beginning to hope that the dizziness might eventually go away altogether. Can only hope. The more I get dizzy the more I panic about falling, so it's been a vicious cycle. Creates a certain amount of inertia.

I'm glad you're doing so much better. Swimming has been no real problem so that's good, but walking and using exercize equipment has been out of the question for me as well for a long while.

take care there,
Lara

I too was very happy to find this area. I've been falling for many years so I'm not sure how many post concussions I've had. I've only been officially diagnosed with one that was last August but I would guess I've had at least one other. And I think its also the one causing part of the other problems I've been having. So its a combo of whats going on with me.

I'm trying to go through all my problems and solve them.

Donna

Donna,
Good to hear from you! Hope PT helps some. You deserve relief and I hope you will get it! The theme seems to be KEEP PLUGGING AT IT! You are very resourceful and that is such a strength. I just received two books in mail. The Mlld Traumatic Brain Injury Workbook by Mason and Neuropsychological Management Of Mild Traumatic Brain Injury by Raskin and Mateer. I will read through and see if I learn anything to share. Stay strong!
Nancy

Nancy
I sure hope it does too. I'm getting worried that my insurance is
getting into trouble though and its going to run out first.

Donna

THis is one of the threads.

But doesn't tell the story.

Donna

Hi,
We must of lost alot of our original posts prior to May. I am briefly going to tell the story of our original PCS nightmare.
My son was injured in a wrestling tournament back in February, he never lost conscousness but was dazed. He begged to go back out and finish his match. He came home looking pretty dazed and having what we knew to be a concussion. He also had a fever that night and I thought he was getting the flu. He seemed to be a bit better in a few days and kept doing school work etc. Needless to say we got terrible medical advice. This is not even negligent, there is still no real defined concussion protocols. My son plugged along with his life for about a week until he could barely walk to his classes, he had no idea what they were talking about in the classes, and he was so dizzy and nausous with terrible headaches. He was not even able to read briefly. Most of all he was so, so tired. Finally we realized he had PCS, and were told he could need several months to recover. At that time, we were lucky to get great help, a concussion specialist, neurosurgeon sports medicine MD and neuropsychologist who is a concussion advisor for student atheletes. He was pretty sick and took alot of time off from school. He finally went back to classes but did no schoolwork and then gradually over the summer had more mental stamina and clarity in his thinking. His exhaustion, gradully resolved and he was able to do more and more. He simply had more mental stamina. His dizziness and headaches gradully resolved from, all the time, to once a day, once a week, twice a month, to gone. He is now basically back to normal but I would say, he is still very vulnerable to relapse. This does make me nervous, he is doing much more than he used to, I think we can expect occas. dizziness here and there. He is doing great in school, testing well etc. WE still need to be very careful. This condition needs to be watched closely and supported, by keeping a patient calm and optimistic. I really think the prognosis is good. Now, we need to protect from reinjury, because as many of you know, you can be back on the roller coaster ride again. The reason why, I think, many of you are so frustrated with doctors, healthcare professionals etc, is there is no measuring tool for this condition's existance or progress. There is no tool, to screen for it's presense, other than symptoms. It does have a very classic symptomotogy and does exist. Once you know what you are dealing with then, at least you can stay calm and rest. It will get better!!!