Hello everyone,

As everyone knows, there is no set date to recover. I had a very upsetting neurologist appointment today. I was basically told I should try to find ways to deal with my symptoms as they won't be going away. I've heard people before say there's no set time. I'm hoping some of you have promising stories for me of progress even after several months.

A bit of background. I sustained a concussion playing ringette on October 29, 2011. Ever since I've been having headaches and neck pain mostly, as well as a few occasional ones (dizziness, nausea,etc.) and cognitive issues. The scale they use there rates 21 symptoms from 0-6 totalling out of 132. 6 weeks into my concussion, I went to the neurologist with 19/ 21 symptoms and 97/132. Since April 2012 to around now, it has roughly stayed the same at 47/132. Not that I'm not glad that it's more bearable now, but it's still painful.

Anyone plateau like me and then continue to improve after 9 months? I could really use some encouraging stories right now!

FYI, Ringette is a form of hockey except with rings and straight sticks rather than a puck a curved stick.

Kayley,

Your neuro is mostly right. The longer the symptoms last, the greater the likelihood that they will be permanent or at least very prolonged.

The better comment is the one about learning to live with your symptoms. As you learn the work-arounds and other accommodations for living with your symptoms and limitations, you will reduce your stresses on your brain. You will find that you can over-come many symptoms with new skill sets.

This getting back to life with a new modified life style will enable you to continue moving forward.

I test at the same level of dysfunction at year twelve as at year one. I am far more functional because I have learned to work and live with my dysfunctions.

You will never be able to tolerate the head injury risks of ringette. That was never a possibility even if you felt like you had a full recovery. Once concussed, always concussed.

Tell us about your most disabling symptoms. Plenty of us will have skills you can learn to live with those symptoms.

We are here for you.

My best to you.

I have found learning about what happened to me helps. I can't proccess like I used to and many things take longer but just knowing has helped me. I have always felt there is more to us than flesh and blood and no matter our scars or disabilities we still have alot to offer.

I would bet you have greater strength than you know. Tomorrow the sun will rise and I will have another head/back/neck ache. I will have fatigue and other symptoms. My life does not resemble anything it used to. But if I can impact one person positivly just once then it will have been a good day.

There is something intangible about us all it can not be measured or weighed but it is always there. Regardless of where you are today tomorrow is oppurtunity. I do not know about you but since my cuncussion time is a resource I have in spades.

Don't let the neurologist upset you too much. This is a proccess we are all working thru.

I really don't have much to offer you at this time that hasn't been said already.

I too was disappointed with My visit with the Neurologist which I like to call the hum doctor as he constantly ...hmmm ahhhh stalled after a question was asked.

You can read more on my visit on my thread. But for now I think we just need to take a step back and really take a breather and rest. We all want to be better and are sick & tired of being sick & tired.

Progress can only be seen with rest and taking things slowly. I still have to remind myself to wait and try again later.

I wish you well into ur recovery. Keep us posted.

Kelly

I was in worse shape one year after my injury than I was one week after my injury. Since late February, which was 13 months after my injury, I have been improving pretty steadily, but slowly.

The photophobia I had in Jan, Feb, and into March was so bad that I could rarely go outside during the day and could only tolerate looking at a computer for less than half an hour a day--and that was with two pairs of sunglasses, screen-dimming software, increased font size, etc. My photophobia is now very much improved, though not gone. Overall, I am in much better shape now (18 months) than I was in January (12 months).

That said, I think it is very good advice to do your best to accept and work with the limitations you are now facing. Nobody can tell you for sure that you will get better, but I also believe that nobody is in a position to tell you for sure that you will not get better (at least, better than you are now). See if you can accept that uncertainty and start working on adapting to a new lifestyle. Maybe you will see little improvements here and there; maybe you won't. But I don't see any reason to lose hope altogether.

I posted this in my reply so I could remember what the questions are! :P

Kayley,


It would be easier for others to help you if you posted about your current symptoms and struggles.

There are people who have recovered after a year or longer. Most who do have long left NT. The long term history of concussion recovery is not well documented.

What steps are you taking to help your brain recover?

What are the most important parts of your life that you want to resume?

If you care to answer, please post in a forum.

Mark


My most troubling symptoms are short term memory, headaches and neck pain. Walking into a room and thinking I remembered what to get and then leaving and realising I didn't need a pen, I needed a knife, something like that. Or going to class and not remembering the lesson from the day before. I've adjusted to making lists, planners and packing bags the night before to prevent issues but it still is sure frustrating! Right now, things are better than they were 9 months ago, but I'm sort of staying the same the last few months.

Headaches are every day, fluctuates in severity. Sometimes it is a dull ache, sometimes it's all day laying in bed in the dark. I've tried lots of things, I take amitryptiline (for headaches, to sleep). I've done massage, craniosacral, osteopath, physiotherapy, reflexology and I'm about to try acupuncture. Massage helps with the neck pain a bit, physio helped a lot with balance, vision exercises, cardio and neck pain. Nothing else really did anything.

Thanks for that point Mark, I guess most of the people done with concussions would leave this forum behind as well! Sometimes it is nice to hear progress from people even after say or year or more, to know it is possible.

Other than the osteopath, CST, etc I listed above, I've been eating healthier. More veggies, multivitamins, fishoil pills (Omega), cut out most sugar, caffeine. Cut out all items with aspartame, glutamate, all that chemically stuff that has been mentioned before in the forum. I've been taking it easy mostly. no school right now, very little work (3 hrs a week), sleeping in.

The most important things for me right now is to try to well get better of course. But, I am wanting to finish grade 12 next year. I haven't made set-in-stone plans on WHEN i'll go to university, but it is a plan sometime in the future. The last year of school was really tough, so with the help of the forum (food stuff to be aware of, support, etc.) and a better understanding of my limitations I hope to make this year a bit easier on me.

Sorry for all of the writing! It might be a lot but 9 months is hard to describe in short!

Ooh, what does that mean, Mark, "once concussed; always concussed"? Is it not possible to get back to a pre concussed baseline?

Thanks for you insight. Champ

I think what he means is that even if you feel great (which is the goal), it is easier to get another concussion and harder to get rid of. Like you are always going to remember when you think about joining that hockey team you want to that you can no longer do it because of the risk. Once concussed, you cannot undo the risk of getting hurt again. Hope that makes some sense!

Champ,

Kayley is half right. Once concussed means you will have less tolerance for a future impact like Kayley said but the part most people never hear is this: Your brain never fully heals to the pre-concussed state.

Many will feel like they have recovered fully but when their brain is put under stress, concussion symptoms will likely manifest again. The triggering stress can be a simple jarring with no head contact, a fever or other illness, school stresses like tests and exams, lack of sleep issues, spending time at altitude above 8000 feet or so, emotional stresses like a break-up or serious injury, etc.

Basically, the concussed brain has much less tolerance for the common stresses of life. Since these triggers may happen months or years later, the person often does not link them to the concussion.

One concussion expert suggests that all doctors include an entry in the patient's medical record that there is a possibility of a concussion if the trauma has even a remote likelihood of jarring the head. The IDC-9 code for this is 850.9. This enables doctors to understand symptoms that manifest later as possibly due to the previous injury.

Then there is the issue of sub-concussive impacts. The brain is much more sensitive to sub-concussive impacts after a previous full concussion.

Personally, I can give myself a concussion now by a simple shaking of my head as one would do to signify No. It will leave me with momentary confusion, dizziness, disorientation, a metallic taste in my mouth or other common concussion symptoms. I have had to learn to turn my head with my shoulders to slow the rotational speed so this does not happen.

The concept of once concussed, always concussed was discovered by research done back in the 1970's.