Traumatic Brain Injury and Post Concussion Syndrome For traumatic brain injury (TBI) and post concussion syndrome (PCS).


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Old 10-08-2014, 08:48 PM #51
hockeymom1998 hockeymom1998 is offline
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Originally Posted by Mark in Idaho View Post
hockeymom,

"he is embarrassed to tell his friends"

What is he embarrassed about ? Does he think his concussion makes him less of a person ?
not embarrassed about having a concussion. his friends all know and are supportive. embarassed to be traveling to atlanta when other guys he knows just get over it on their own. also afraid we go to atlanta and he comes home the same after spending all that money

he is just not telling his friends about the trip. keeps all the questions away

i am sure if it works he wil tell everyone
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Old 10-08-2014, 08:57 PM #52
Mark in Idaho Mark in Idaho is offline
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"embarassed to be traveling to atlanta when other guys he knows just get over it on their own." He needs to understand that no two concussions are the same. In fact, research shows that there is little connection to impact forces and the time it takes to recover from a concussion. He needs you to help him grow up in this area. Otherwise, he will put himself at risk by hiding head impacts from you and his coaches. Getting a concussion is not a sign of weakness.

Does he know of all the pros who have been to Carrick ? Sidney Crosby is probably the most famous.
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Old 10-08-2014, 09:22 PM #53
hockeymom1998 hockeymom1998 is offline
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Quote:
Originally Posted by Mark in Idaho View Post
"embarassed to be traveling to atlanta when other guys he knows just get over it on their own." He needs to understand that no two concussions are the same. In fact, research shows that there is little connection to impact forces and the time it takes to recover from a concussion. He needs you to help him grow up in this area. Otherwise, he will put himself at risk by hiding head impacts from you and his coaches. Getting a concussion is not a sign of weakness.

Does he know of all the pros who have been to Carrick ? Sidney Crosby is probably the most famous.
he knows the whole crosby story and joey hishon - that is why he now wants to go

he knows all concussions are different that is why he is afraid atlanta wont work for him and he will have to explain more to his friends

we are respecting his not telling his friends about the trip
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Old 10-09-2014, 08:54 AM #54
PCSfog2012 PCSfog2012 is offline
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Quote:
Originally Posted by hockeymom1998 View Post
not embarrassed about having a concussion. his friends all know and are supportive. embarassed to be traveling to atlanta when other guys he knows just get over it on their own. also afraid we go to atlanta and he comes home the same after spending all that money

he is just not telling his friends about the trip. keeps all the questions away

i am sure if it works he wil tell everyone
i'm the same way and didn't tell others of the trip. i don't need any more questions of "are you better yet....?" Mark makes a good point for those of us 'in the know.' but for those that aren't, there is a massive stigma attached particularly with athletes as i can speak first hand.

Quote:
Originally Posted by hockeymom1998 View Post
also are you on any meds? what do you take for migraines? did carrick doctors take you off meds? my son takes advil when he has a bad headache otherwise no meds
yes, i'm on meds and they didn't touch anything and don't get involved in that. i did reduce my meds dramatically while there and since. i'm continuing to gradually wean myself down with guarded optimism.
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Old 10-09-2014, 09:24 AM #55
hockeymom1998 hockeymom1998 is offline
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Originally Posted by PCSfog2012 View Post
i'm the same way and didn't tell others of the trip. i don't need any more questions of "are you better yet....?" Mark makes a good point for those of us 'in the know.' but for those that aren't, there is a massive stigma attached particularly with athletes as i can speak first hand.



yes, i'm on meds and they didn't touch anything and don't get involved in that. i did reduce my meds dramatically while there and since. i'm continuing to gradually wean myself down with guarded optimism.
thanks for understanding about keeping the trip on the downlow. funny you did the same thing. he is bombarded all the time with questions and this would just add fuel to that fire.

how is your headache today? i hope you can get off all your meds, wouldn't that be amazing!
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Old 10-09-2014, 09:47 AM #56
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Originally Posted by hockeymom1998 View Post
thanks for understanding about keeping the trip on the downlow. funny you did the same thing. he is bombarded all the time with questions and this would just add fuel to that fire.

how is your headache today? i hope you can get off all your meds, wouldn't that be amazing!
headache free yesterday and so far today. and yes, i told 3 people in my family and I have countless text messages and voicemails asking if I'm better now. I get about 4 messages a day and wish I never told them. I just stopped responding and have my better half answer them. Thankfully I didn't tell anybody else b/c people (that aren't on this board or experiencing it) just don't get it.

If and when I'm better, believe me: everyone will know as I'll shout from the rooftops. Ok, maybe not the rooftops since I can't afford a fall
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Old 10-09-2014, 10:00 AM #57
hockeymom1998 hockeymom1998 is offline
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Originally Posted by PCSfog2012 View Post
headache free yesterday and so far today. and yes, i told 3 people in my family and I have countless text messages and voicemails asking if I'm better now. I get about 4 messages a day and wish I never told them. I just stopped responding and have my better half answer them. Thankfully I didn't tell anybody else b/c people (that aren't on this board or experiencing it) just don't get it.

If and when I'm better, believe me: everyone will know as I'll shout from the rooftops. Ok, maybe not the rooftops since I can't afford a fall
i am so happy for you that you are having a 3rd headache free day. i am so afraid to jinx anything but yay!

i hear ya.. if it works, we tell EVERYONE but for right now the close family members that do know are already talking about it too much and putting too much pressure on him. it is true, unless you live with this day in and day out you cannot possibly understand. he never understood before this either. the toughest thing for me to get is how last week can be better than this week!!! if time heals and he did nothing different this week then last. the fact that the progression is not in a straight line is so hard to understand and to deal with.

where did the doctors stand with you on doing too much... cognitive or physical. did they tell you to slow down, speed up... my son's doctor has him so afraid to do anything. he doesn't even want him out watching a sporting event. like i have said before this doing nothing is depressing, isolating and thus far has not made a difference that he can tell.

i am sorry if i am asking you too many questions. i am just happy to talk to someone who is going through it.
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Old 10-09-2014, 10:18 AM #58
PCSfog2012 PCSfog2012 is offline
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Originally Posted by hockeymom1998 View Post
i am so happy for you that you are having a 3rd headache free day. i am so afraid to jinx anything but yay!

i hear ya.. if it works, we tell EVERYONE but for right now the close family members that do know are already talking about it too much and putting too much pressure on him. it is true, unless you live with this day in and day out you cannot possibly understand. he never understood before this either. the toughest thing for me to get is how last week can be better than this week!!! if time heals and he did nothing different this week then last. the fact that the progression is not in a straight line is so hard to understand and to deal with.

where did the doctors stand with you on doing too much... cognitive or physical. did they tell you to slow down, speed up... my son's doctor has him so afraid to do anything. he doesn't even want him out watching a sporting event. like i have said before this doing nothing is depressing, isolating and thus far has not made a difference that he can tell.

i am sorry if i am asking you too many questions. i am just happy to talk to someone who is going through it.
Thank you so much. As most here will tell you, day-to-day or week-to-week can change dramatically and it can be difficult (sometimes impossible) to find the cause except that it happens.
My doctors wanted me doing nothing in the beginning but that was after I had already been working 7 days a week for 8 months with full blown symptoms. When they told me to stop I did, but things got worse for a while. It's a very difficult balance that I have yet to figure out. Like your son, I live in fear of triggering attacks which limits my activity.

I sent you a private message if you have more specific questions that you prefer to keep off the main forum. Happy to share my experience but that's all that I have; and there are so many others that can share theirs as well. I wish it was as simple as A causes B and C causes D, but our brains are so much more complex than that. Kids take longer to recover and I hope your son recovers fully. Like others have said, the less we (try so hard) not to worry about it, the better off we will be. Much easier said than done for me especially with some other health issues creeping up that I've never had.

A true concussion expert ,while hard to find, is vital to recovery in my humble opinion.

Last edited by PCSfog2012; 10-09-2014 at 10:19 AM. Reason: typo
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Old 10-09-2014, 07:08 PM #59
cerebellarmaniac cerebellarmaniac is offline
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Thanks for the detailed and thoughtful response. I hope the exercises they've given you help you.

How long did it take you to get into the clinic?

Also can you expand on your horizontal nystagmus and any changes you've subjectively noticed?

Additionally, can you expand on your vertigo, the causes (is it positional?) And any affects the clinic's therapies may or already have had on you?

Lastly, have your tolerance/endurance levels improved since you left the clinic?
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Last edited by cerebellarmaniac; 10-09-2014 at 07:47 PM.
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Old 10-10-2014, 08:57 AM #60
PCSfog2012 PCSfog2012 is offline
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Originally Posted by cerebellarmaniac View Post
Thanks for the detailed and thoughtful response. I hope the exercises they've given you help you.

How long did it take you to get into the clinic?

They had a cancellation when I called on a Friday and I was there on Monday. Otherwise I was looking at roughly 4-6 weeks.

Also can you expand on your horizontal nystagmus and any changes you've subjectively noticed?
My nystagmus occurs slightly with gaze but mostly with tracking where my left eye just can't keep up with both eyes skipping and left eye turning outward (wrong way). I only know what they do from the cameras. After a few treatments, my eyes didnt feel "sticky" needing to jump from one object to another. They began to feel smooth in their tracking and it also became much easier on me to complete their exercises; and I've felt much sharper since. As if I'm catching up to the speed of life.

Additionally, can you expand on your vertigo, the causes (is it positional?) And any affects the clinic's therapies may or already have had on you?
Vertigo is a tough one - can't say what biggest triggers are other than no sleep and/or flying. I haven't had vertigo since the 3rd day there. I did have some dizziness one day this week, but it was short lived. Hopefully this continues....


Lastly, have your tolerance/endurance levels improved since you left the clinic?
My endurance was improved as I went from not leaving the house to walking about 1 mile per day. It was easier while down there. Once I got home, all of the stress of 'how am I going to ......" started to creep back in and I need to ward that off so it doesn't interfere with my physical exercise and stamina.

Hope that answers your questions. And please be reminded this is only one person's unique injury, treatment plan, and very preliminary results.
Cautiously optimistic......

Last edited by PCSfog2012; 10-10-2014 at 08:58 AM. Reason: font
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