appt with Toronto sport concussion specialist
 

Just had my appt with a Toronto Neurosurgeon that is a sport concussion specialist. We came to Toronto yesterday so I would have time to recover and so far I'm surviving. The main thing I wanted to pass on from my appt was she said its time to start pushing myself a little bit.

This goes along with the other tread about pushing yourself. She said that, aside from hitting your head again, nothing I'm doing is causing harm. So even though it feels uncomfortable I can push a little.

Now she didn't say to push and push and push by working full time and going to the gym every day. She wants me to take an interest course so I'm out of the house using my brain but nothing with tests or stress. She also wants me going swimming or to do yoga. Basically she wants me to get out of the house more.

The other thing she said is that its important to know that I WILL get back to everything in my life including my job and cycling. She says she hasn't met anyone that hasn't gotten back. What a statement! She says she has people that don't go back to hockey but I don't play that anyhow.

One other thing, the "push" a little bit instruction is NOT for in the first couple months. She said its important not to let everything get so lazy and weak that its harder to come back from. Kind of the use it or lose it attitude.

She would also like me working from home for a couple hours a week but that's not possible with my company. She said meditation is fabulous and to continue vestibular therapy and get neck massages. Said I don't need to see anyone for eyes. Its brain, not eyes and they will get better.

I'm sure theres more but I'm confused and tired so this is it for now.

Hope you are having a good day.

CC

Thank you
 

CC,
That is good news. It sounds like you also had a positive experience at your appointment. I had a good experience at my Neuropsychological testing also yesterday. You can read my post about it. One of the main things she said too was that we can get you back to an independent level of functioning again. You may not be able to go back to work but we can get you living a full life again. :D
That gave me a lot of hope.
Your post sounds great too. Like you might even be able to go back to work eventually. That is so very encouraging.
I think it is important to get out of the house a little every day. Just do small things that don't cause a lot of stress or stressful things for short periods. Otherwise we are going to get major depression. God knows we don't need that on top of what we already have.
Great news!
Brain

Hi Brain,

That's exactly what she said today.... the biggest problem with people that have been recovering from concussion a while (I'm almost 8 months) is the emotional issues making everything worse. She said that, aside from hitting your head again, nothing will make you worse UNLESS you start getting psychological issues on top of it. So getting out of the house, being active again, taking part in things you enjoy are all very important for recovery. Too much rest at this stage is actually a problem.

I remembered the one thing she also said, for anyone thinking of doing it, was to not do weights or to be very careful with them because they could actually cause further brain trauma. I guess straining is out?

My mom's not happy that she said I could return to cycling with no concerns. I think I'll have a fight on my hands if I try it though. (mysterious flat tires, bike missing from the garage, etc.) Just to keep her happy I might have to think of a new sport.... maybe mixed martial arts!!!LOL

Time to go rest. I think that was all the information worth sharing for now.

CC

Glad you had the appointment, but I would be careful to asssess the validity of everything she told you, espeicalliy the part about everyone making a full recovery (can't be true, can it?!) and making the statement about it being your brain, not the vision. Vision is a brain function, not just a mechanical function of the eyes. Many doctors (including the neurologists and sports doctors I have seen) had NO IDEA that a concussion (tbi) could affect your vision. But they were patently wrong, despite their unbelievable confidence in the truth of their belief.

If I were you, I would still get the binocularity of the vision (and other functions) checked out if only to rule it out or save yourself some suffering.
Good luck with the continued recovery!

Hi Mokey,

I totally agree with everything you said! I'm wondering if she means that everyone she's treated has returned to their sport and not everything necessarily. My mother was with me though and we asked for clarification and I think she meant recover from everything.

I have read that its very important people believe/ know they will get better so maybe its a lie or exaggeration? I couldn't see docs doing this on purpose but maybe.

Tomorrow I have an appointment with my neuropsych who has pretty much told me not to expect to be exactly what I was before but that with learning new ways to do things i'll be a new successful person. I'll post her opinion of this statement tomorrow.

Now for the eyes, she did say to have them checked out by my opthalmologist and if he thought they were fine then its my brain not registering what my eyes are seeing fast enough. Optometrist says my eyes are fine. Eyes are only thing getting worse! I have appt in May for opthalmologist that I will not be cancelling at this point.

Doesn't hurt to get one more opinion right! I may never make it to the neuro opthalmologist step if I can't get a referral but we'll see. I'm kicking myself now for not outright asking her for a referral but sounds like she would have said no.

Thanks for the advice Mokey!

Take care
CC

I agree with you on believing in a full recovery! I don't like it when some of my treatment team look at me and say that maybe I'll be able to return to work but not to teaching (which I LOVE)...I have asked myself if I am in denial about the extent and permanency of my injuriesOR am I just a positive person who loves overcoming challenges! I don't want to believe that this is as good as it gets, so I am believing in a more complete recovery. I have accepted I will never be the same, and have accepted (I think) that I am letting go of some favourite sports for ever....

Lots of psychological processing to do with this type of injury. Important to find your inner strength and hold on tight to it! Not easy some days (today...two appointments, complete flat tire, migraine, school janitor died suddenly last night...) but hold on we must!

Great you have your mother for support!

Encouraging to hear of your progress CC and thanks for sharing :hug:

Sometimes it takes me a while to process what the professionals say and I end up seething afterward. And wishing I'd asked better questions. Lol! I have yet to have a truly good encounter with a medical person since this injury.

So... Here's to hope! Sharing the positive messages is good for all of us I think.

That's great news for you and glad you are getting the specialist you need! on another note.... I guess that's why I have a few impairments because I suffered emotionally BAD....but still with my impairments I will make sure me,myself & I get to at least 85% better....good to know so now I can go take a walk.

neuro psych's opinion of appt
 

Just had an appt with my neuropsych and we discussed my appt yesterday with neurologist. ok lets see if I can remember what she said and try to explain it....

My neuro psych agrees that not everyone with a concussion recovers 100%. She says though that the odds are in the persons favour that they will. 85% of people recover in the first 3 months. 10% more in the first year and only 5% will still have issues after 1 year but lots of them will still recover also. So the odds are in your favour.

Also, it's important that people KNOW and believe that they will get better. If you believe you will not get better, you will head towards that goal. It is NOT the same things as,.... if you only believe you are better you will be better. Unfortunately you can believe all you want and sometimes you will only achieve a certain recovery. But if you believe you will not get better, odds are it is self fulfilling. Am I making sense here?

So it's not that she thinks the doctor yesterday was lying but that she was going with the statistics and also trying to instill a positive mental attitude so I strive to be 100% again instead of thinking... this is it i'm never going to get any better. She said for me... at around 18 months if there are still lots of symptoms we will start to re-shift focus a little.

She agrees with me taking a gentle therapeutic yoga class and that it has been shown to be extremely beneficial for anxiety and depression. I am going to sign up today! As for taking an interest course, they start up again in May and she says it might be best to wait until then. I'm going to look for cooking classes or seminars that are one time, hour or so to go to.

It's interesting that she is going on a 2 week retreat where she lives in a cabin by herself and does meditation, yoga, hiking, etc. all by herself. A self reflection, rejuvenation, healing and wellness retreat. Sounds nice! She's done 3 one week guided group retreats but this is her first solo one. Can't wait to hear about it! She says they're addictive.

My brain is soooo toast from yesterday. Gotta go rest.

I hope you are all having a good day and if you're anywhere near these storms stay safe.

CC

The concussion specialist said "The other thing she said is that its important to know that I WILL get back to everything in my life including my job and cycling. She says she hasn't met anyone that hasn't gotten back. What a statement! She says she has people that don't go back to hockey but I don't play that anyhow."

The issue to consider here is quite simple. Most people being seen by a concussion specialists stop being seen long before this statement can be verified "She says she hasn't met anyone that hasn't gotten back. " The concussed patient just slips away from the doctor with their 80% recovered state. Why should they keep seeing the doctor when they are doing so well. They then return to their normal activities and don't necessarily connect future struggles to the previous concussion.

The research shows that stresses will cause a return of some symptoms. It is difficult to connect this return of some symptoms to the original concussion. One concussion specialist suggest making sure the medical record shows a diagnosis of concussion or even just a probable concussion so that future symptoms can be understood in context. Otherwise, future symptoms cause a diagnosis of malingering or somatoform disorder.

You may be able to return to cycling but the question is should you return to cycling. Riding in a peloton increases the risk of injury due to the domino effect. You want to seriously consider how you can reduce the risk from others near you. Maybe lead a following pack.

My best to you.

Hi Mark!

I agree that people got back to their sport and went away not reporting any ongoing issues down the road. I don't think I'll ever return to riding in a large group. In fact I might sell my lovely road bike and just get a recreational bike to just pedal around on for relaxation and to enjoy the outdoors. We have a cycling path down the street from us where I wouldn't even have to worry about cars!

When I think of riding my bike there's fear there. Especially being clipped into the pedals. I didn't get back on the horse quickly enough! I don't know if I'll ever ride again I just don't like my mother telling me I can't! (I'm 39!!)

I'm looking forward to trying yoga and I'll see what the future holds later.

Take care
CC

Very good advice. From the experience of a 13 year old who had virtually no support for living with TBI and PCS, I would say to everyone that getting 'lazy' is a huge pit to crawl out of. My life has been one of avoidance and faking it. BUT, even now, 40 years later, the 'pushing' is paying off. I've noticed improvement in myself, little things like an improving short term memory. Its like a Field of Dreams attitude, use it and improvement will come.
Jamie :winky:

I sure hope I'll return to hockey! It's my passion! Maybe a less aggressive level.

Very encouraging though!

CC,

One of the issues to consider before you take to a bike is your startle response. Many of us have a wicked startle response. I will not ride in a bike lane because of this risk. The first car by might not be a problem but if I startle too bad, I might veer into the next car's path. A bike and foot path does not have as much risk in most cases. Our local river walk path often has some speedsters sneaking up and zooming by like a whirlwind.

Ride safe.

Not to derail this thread, but what IS the deal with the crazy startle response?? It drives everyone around me nuts... never mind ME!! Anyone ever find anything that helps with it?
Starr

Thanks for the reminder Mark. I am NOWHERE near being ready to even think about riding a bike yet! My dizziness and eye problems are my two main symptoms and I cannot walk normally or any length of time because of them. Cycling would not be a good idea.

I'm going to try a gentle restorative yoga class this week. Its for "mature" people or those recovering from issues. Seeing as I'm not quite 40 yet (have the next 2 1/2 months to say that!) I don't think I'm quite mature but I definitely have issues ;)

Now, as to the startle.... what is up with that! I don't mind the topic being derailed! I'm guessing its something chemical because we are already in a constant fight or flight response so when we are startled we are quicker to respond? Does that make sense?

I just read on another website yesterday where some people believe PCS doesn't exist and its all for attention or money but that's plain B.S. and the fact we all have such similar symptoms only strengthens that its real and the same thing!

Hope you are all having a good weekend!

CC