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| Traumatic Brain Injury and Post Concussion Syndrome For traumatic brain injury (TBI) and post concussion syndrome (PCS). |
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02-26-2013, 11:14 AM
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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
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I'm a 39 year old, female, accountant. On July 2, 2012 I crashed my bike at the end of a 65KM road ride. I was fine that day but woke up the next morning to my current world. Ongoing symptoms include: dizziness, blurred vision, light and noise sensitivities, cognitive problems, uncontrollable emotions/depression/anxiety, headaches (but they're getting better), mental and physical fatigue, difficulty communicating and sleep disturbances. Currently seeing a fabulous Neuro Psychologist and vestibular physiotherapist and hoping to soon see a neuro ophthalmologist. I am currently doing 20 minute stationary bike rides daily, 20 minutes of meditating, 15 minutes of Lumosity and lots of resting. I have not been able to work or drive since the accident. The things that have helped me the most since the accident are vestibular therapy, gel eye drops (for blurred vision, sensitivity and dryness), amitriptyline (10mg), and meditating. I am finally starting to see some slight improvements and am hopeful! My brain WANTS to heal itself... I just have to let it and stop trying to get better! |
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02-26-2013, 12:20 PM
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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.  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
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Brain patch. . Had MVA in 2006 resulting in post concussive syndrome manifested by cognitive impairment, chronic pain/ fatigue. Chronic pain of head, neck, back, left leg. Other problems include REM sleep behavior disorder, nocturnal frontal lobe epilepsy, chronic migraines associated with nausea/vertigo, episodes of passing out, hypoglycemia, liver dysfunction (had accidental overdose of acetaminophen in 2009) had liver and kidney failure, hernia, degenerative disc disease with compression of nerve root, PTSD, and other problems associated with functioning problems from traumatic brain injury (light, sound sensitive, easily overloaded, easily distracted, cannot focus, anxiety problems etc.) |
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02-26-2013, 04:39 PM
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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
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I'm a 39 year old, female, accountant. On July 2, 2012 I crashed my bike at the end of a 65KM road ride. I was fine that day but woke up the next morning to my current world. Ongoing symptoms include: dizziness, blurred vision, light and noise sensitivities, cognitive problems, uncontrollable emotions/depression/anxiety, headaches (but they're getting better), mental and physical fatigue, difficulty communicating and sleep disturbances. Currently seeing a fabulous Neuro Psychologist and vestibular physiotherapist and hoping to soon see a neuro ophthalmologist. I am currently doing 20 minute stationary bike rides daily, 20 minutes of meditating, 15 minutes of Lumosity and lots of resting. I have not been able to work or drive since the accident. The things that have helped me the most since the accident are vestibular therapy, gel eye drops (for blurred vision, sensitivity and dryness), amitriptyline (10mg), and meditating. I am finally starting to see some slight improvements and am hopeful! My brain WANTS to heal itself... I just have to let it and stop trying to get better! |
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| "Thanks for this!" says: | Brain patch (02-27-2013) |
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02-26-2013, 07:18 PM
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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!
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What happened: Legs pulled forward by a parent's hockey stick while resting at the side of the rink at a family skate....sent me straight back. I hit the back of my head (with helmet) on the ice, bounced a few times, unconscious for a few minutes. September 11, 2011. Off work since then…I work part-time at home when I can. It has been hell but slowly feeling better (when I am alone☺). Current symptoms: Vision problems (but 20/20 in each eye alone!) – convergence insufficiency – horizontal and vertical (heterophoria), problems with tracking and saccades, peripheral vision problems, eyes see different colour tints; tinnitus 24/7 both ears; hyperacusis (noise filter gone!), labyrinthian (inner ear) concussion, vestibular dysfunction (dizzy, bedspins, need to look down when walking); partial loss of sense of smell; electric shocks through head when doing too much; headaches; emotional lability; memory blanks; difficulty concentrating. I still can’t go into busy, noisy places. Fatigue. Executive functioning was affected – multi-tasking, planning, motivation. Slight aphasia. Shooting pain up neck and limited mobility at neck. Otherwise lucky! Current treatments: Vestibular therapy, Vision therapy, amantadine (100 mg a day), acupuncture and physiotherapy for neck, slow return to exercise, magnesium, resveratrol, omega 3 fish oils, vitamins D, B and multi. Optimism and perserverance. Last edited by Mokey; 02-26-2013 at 07:19 PM. Reason: Typo |
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02-26-2013, 07:35 PM
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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
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I'm a 39 year old, female, accountant. On July 2, 2012 I crashed my bike at the end of a 65KM road ride. I was fine that day but woke up the next morning to my current world. Ongoing symptoms include: dizziness, blurred vision, light and noise sensitivities, cognitive problems, uncontrollable emotions/depression/anxiety, headaches (but they're getting better), mental and physical fatigue, difficulty communicating and sleep disturbances. Currently seeing a fabulous Neuro Psychologist and vestibular physiotherapist and hoping to soon see a neuro ophthalmologist. I am currently doing 20 minute stationary bike rides daily, 20 minutes of meditating, 15 minutes of Lumosity and lots of resting. I have not been able to work or drive since the accident. The things that have helped me the most since the accident are vestibular therapy, gel eye drops (for blurred vision, sensitivity and dryness), amitriptyline (10mg), and meditating. I am finally starting to see some slight improvements and am hopeful! My brain WANTS to heal itself... I just have to let it and stop trying to get better! |
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| "Thanks for this!" says: | Brain patch (02-27-2013), Mokey (02-26-2013) |
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02-26-2013, 08:16 PM
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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!
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What happened: Legs pulled forward by a parent's hockey stick while resting at the side of the rink at a family skate....sent me straight back. I hit the back of my head (with helmet) on the ice, bounced a few times, unconscious for a few minutes. September 11, 2011. Off work since then…I work part-time at home when I can. It has been hell but slowly feeling better (when I am alone☺). Current symptoms: Vision problems (but 20/20 in each eye alone!) – convergence insufficiency – horizontal and vertical (heterophoria), problems with tracking and saccades, peripheral vision problems, eyes see different colour tints; tinnitus 24/7 both ears; hyperacusis (noise filter gone!), labyrinthian (inner ear) concussion, vestibular dysfunction (dizzy, bedspins, need to look down when walking); partial loss of sense of smell; electric shocks through head when doing too much; headaches; emotional lability; memory blanks; difficulty concentrating. I still can’t go into busy, noisy places. Fatigue. Executive functioning was affected – multi-tasking, planning, motivation. Slight aphasia. Shooting pain up neck and limited mobility at neck. Otherwise lucky! Current treatments: Vestibular therapy, Vision therapy, amantadine (100 mg a day), acupuncture and physiotherapy for neck, slow return to exercise, magnesium, resveratrol, omega 3 fish oils, vitamins D, B and multi. Optimism and perserverance. Last edited by Mokey; 02-26-2013 at 08:16 PM. Reason: Typo |
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| "Thanks for this!" says: | Brain patch (02-27-2013) |
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02-26-2013, 11:54 PM
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Encouraging to hear of your progress CC and thanks for sharing
 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.
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About it: October 26, 2012 I fell backward on an icy parking lot at work. I was on Workers Comp for 9 months. My PCS : everyday headaches became once in a while headaches, and neck pain became manageable. Still have occasional mild dizziness, sometimes fullness in the ears, convergence insufficiency, sequencing struggles, short term memory struggles, verbal processing delays. CT neg, MRI neg. Therapies: prism glasses, acupuncture, icing neck, resting, supplementing, Elavil 20mg at bedtime. NEW: Completed 12 weeks of physical therapy and returned to work full time. About me: I'm a marketing manager, a mom with a blended family and wife to a heart attack survivor. I believe my brain injury taught me more than it cost me. I'm grateful to still be me! |
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02-27-2013, 11:14 AM
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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.
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What Happened: In 2011 I was in a MVA . Symptoms: Physical: I am always cold in any season!!I cannot tolerate anything pressure on my head(sun glasses,hats)longer then a hour,Lock jaw/Displaced TMJ, Dropsey, Hands go numb, Arms go numb, back of head numb (when asleep),Muscle spasms in face & upper body,migraines, concentration headaches, dizziness, nausea, neck and back trauma (from accident), tinnitus, extreme light sensitivity, noise sensitivity, EXTREME fatigue, impaired vestibular system, balance off, Pupils NEVER equal, disrupted sleep cycles,speech problems. Cognitive: Cognitive Behavior, Brain fog, impulsivity, speech problems, word finding problems, slowed processing speeds, impaired visual memory, impaired complex attention Emotional: Unable to handle stress or overstimulation without getting extremely irritable or angry, easily overstimulated, MAJOR depression, major anxiety, Panic attacks Treatment so far: Treatment for PCS,PTSD,Depression & panic,Vestibular therapy, Physical therapy, Vitamin Schedule,Walking,No Dairy, No eggs, No caffeine, No artificial coloring, Sleep with 2 pillows, Very little sugars consumed, Eat healthy,No alcohol, Medications, limit stress and overstimulation. ~*~Learn to treasure yourself and your Divinity. Be willing to accept yourself completely. Be yourself, be graceful, be kind, be wild, be weird ... be true to yourself~*~ |
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| "Thanks for this!" says: | Brain patch (02-27-2013) |
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02-27-2013, 01:59 PM
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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
__________________
I'm a 39 year old, female, accountant. On July 2, 2012 I crashed my bike at the end of a 65KM road ride. I was fine that day but woke up the next morning to my current world. Ongoing symptoms include: dizziness, blurred vision, light and noise sensitivities, cognitive problems, uncontrollable emotions/depression/anxiety, headaches (but they're getting better), mental and physical fatigue, difficulty communicating and sleep disturbances. Currently seeing a fabulous Neuro Psychologist and vestibular physiotherapist and hoping to soon see a neuro ophthalmologist. I am currently doing 20 minute stationary bike rides daily, 20 minutes of meditating, 15 minutes of Lumosity and lots of resting. I have not been able to work or drive since the accident. The things that have helped me the most since the accident are vestibular therapy, gel eye drops (for blurred vision, sensitivity and dryness), amitriptyline (10mg), and meditating. I am finally starting to see some slight improvements and am hopeful! My brain WANTS to heal itself... I just have to let it and stop trying to get better! |
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02-27-2013, 04:01 PM
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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.
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Mark in Idaho "Be still and know that I am God" Psalm 46:10 |
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