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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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05-01-2013, 09:42 PM
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Sorry first of all I am a little disturbed.The reason is because it seems like I am the ONLY person that was told I will never be 100%
 What is up with this?Is it because I got hit at a high speed, because M.Ds neglected me, because I am a female?I mean What?This is crazy!I am not trying to be a negative Nancy but I want to know did anyone else M.D's tell them they would not be 100%?Is this real or what is going on to determine this 100%?I did not know of such a thing after a TBI....Any feedback is appreciated greatly
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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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05-01-2013, 10:24 PM
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Legendary
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Whether an MD tells a patient they will never recover to 100 % or tells them they can expect to heal 100% is based on the knowledge of the MD. In reality, nobody who suffers a brain injury will ever recover 100%. Many doctors just don't understand this. They think that since their patient stops complaining about symptoms that it means they are 100% free of symptoms.
Research was done decades ago to show that there are always residual symptoms. For some, they are quite obvious. For others, they do not manifest these ongoing symptoms until they are under stress of some kind. So, MiaVita, your doctor was being more truthful with you. 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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| "Thanks for this!" says: | MiaVita2012 (05-02-2013), MsRriO (05-01-2013) |
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05-01-2013, 10:24 PM
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Mia,
Pretty much since I started going to rehab last July (my accident was in Feb) all my health care providers have been preparing me to accept that my recovery will not likely be 100%. Everyone from my physiatrist, rehab nurse, my rehab psych, definitely the neuropsych and most recently my physiotherapist. Its all been the same story, but of course they all deal with slightly different aspects of my not returning to my pre injury self at 100%. Some days its hard to hear but most days I just try to remember that no one ever stays the same, everyone is ever changing and growing and that this is just a phase of rapid change and growth for me. While they tell me I won't ever be 100% or back to my pre injury self, I also don't let that hold me back from trying or at least working hard to get better and figure out ways to cope with whatever is giving me a hard time at the moment. Doesn't mean it doesn't bother me sometimes, depress me sometimes, irritate me, etc... just trying to wrap my head around it and move forward from where I am. So while I can't say why they are saying it your case, all I can tell you is that they've also said it to me. You're not alone.  Starr |
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| "Thanks for this!" says: | MiaVita2012 (05-02-2013) |
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05-01-2013, 11:33 PM
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Mia, Starr's comment applies to me as well. ��
There is a sweet spot (to use a tennis phrase!) between denial and being motivated to recover as much as possible. I think Mark is right...brains are changd forever with mtbis. Even for people who call it a concussion. Even a so called minor concussion. I am trying to believe that even though my brain will never be what it was, I will still be 100% of what I can be. If that makes sense! Hang in there. We will improve until the last breath, which is hopefully a long way away!
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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. |
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05-01-2013, 11:39 PM
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I have been told I will recover 100% so many times by well-meaning or uninformed medical professionals that it's lost meaning.
Predicting the future is futile, all we have is today. When it comes down to it, managing our expectations seems to be a waste of energy, because all we have is today. No one knows. What is 100% anyway? What does "recovered" even mean? It varies from person to person because its all a matter of perception. Try to let it go. You don't answer to anyone but yourself when it comes to your recovery. Who is to say that you won't someday feel healed?
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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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05-02-2013, 05:20 AM
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I've always assumed that doctors say you can get back to 100 percent because they think an optimistic outlook may positively impact recovery or perhaps that negative psychological factors--like anxiety and depression--can negatively impact recovery. Now no one has ever said this to me, so this is just my personal guess.
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I have recovered my cognitive function, and I've overcome severe vertigo through sensory integration therapy. Wellbutrin has helped me escape depression. I have recently had a few stress-related migraines, as well as headaches stemming from eye strain. I'm also dealing with tinnitus, lack of stamina, extreme light sensitivity, and eye pain. Diagnosed with 9 different vision issues: convergence insufficiency, pursuit eye movement deficit, egocentric visual midline shift, photophobia, visual information processing delays, accommodative insufficiency, saccadic eye movement deficit, lack of coordination, and central peripheral visual integration deficit. *First concussion: October 2010. I was pregnant and got rear ended. I associated my mild PCS symptoms with baby brain and blamed my light sensitivity on allergies and dry eyes. *Second concussion: December 2011. I hit my head on a wooden beam, saw stars but did not lose consciousness, and I had very disturbing PCS symptoms but didn't go to the doctor. *Third concussion: August 2012. I caused a car accident as a result of PCS symptoms. Thankfully no one was injured but me. My husband confronted me, and I finally sought help and took medical leave from work. My symptoms worsened, and I developed severe vertigo. *Fourth concussion: November 2012. I was riding in a car with a friend and we were hit head on by a driver who lost control of her car. I didn't have a big increase in PCS symptoms. |
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| "Thanks for this!" says: | MiaVita2012 (05-02-2013) |
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05-02-2013, 07:47 AM
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Thanks everyone I appreciated it!The first thing the Neuropsychologist said to me "ARE YOU SURE YOU WANT TO DO THIS TEST?ARE YOU READY FOR THE RESULTS?ARE YOU GOING TO BE IN ANY DENIAL?"He asked me 3 times over and over.
I kept saying yes and I been fighting for a year and half with M.D.s to find out what was wrong with me so I am ready!Well got diagnosis after spending a day of testing with this M.D.When he went over the results in a sincere way and stated with this there is no 100% going back to where I was before because the brain change.As Mark said to me he was truthful and he knew my story of how many M.D.s pushed me under the rug till I found the best neuro in the community to get linked with neuropsychologist. Then they gave me a month and half to absorb it over the holidays.This was I suppose grieving from withdraw from Master's degree, closing my biz, and my old life. And it was time to start quiet rest, get my daughter situated, and apply for disability. Then when I did disability test a few weeks ago that M.D. even told me that I would not be able to work! I am going to try school and hope to be able to work one day in years to come when I finish the last therapy on the list which is cognitive therapy. "All I can do is be 100% with myself for the best results and put in all the work because I am the only one that can get to the finish line" That is what all my team of M.D.s tell me, and I believe this 
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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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05-02-2013, 07:19 PM
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I always try to hope that the post tbi person will be BETTER than the pre tbi person. Just think all you have learned! There have to be some silver linings.
I have already had some of my friends tell me that they like the "new " me. We can't just fight it. We might as well embrace it. I'm trying to find the new me. Su seb
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Su Seb Slipped in puddle and fell. 10/6/12. Whiplash and concussion. 48 years old. Dizzy, balance, vision, taste, sound, light, cognitive, headaches, foggy, head pressure , irritability,.... |
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| "Thanks for this!" says: | DFayesMom (05-02-2013), MiaVita2012 (05-02-2013), Mokey (05-02-2013), MsRriO (05-02-2013), poetrymom (05-02-2013) |
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05-02-2013, 10:56 PM
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I like myself better now already!I have few friends left and few are still in denial, the others like some of the new qualities about me.Now if I could get all the family to understand better because they had to live with the worst of me for a year and half before diagnosis.I am pretty much putting my family back together after this horrific storm.I just wish I did not have to lose so many people during this search....I cannot do anything about it!I was sick!It's not my fault, It is not anyone's fault....it was a accident and I suffer few silent illnesses. I just like to the truth from my M.D.s so I knew before I even started my therapies knowing what and who has to do this!ME!To try for 99.9%lol
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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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05-04-2013, 01:14 PM
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I have also been told i will not be 100 percent. I am a 52 years old single Mother of four (Three teenagers at home ). Prior to my accident March 2012, i was a Self employed bookkeeper Working on average 60 hours per week, i was told Pretty Early on that i would never be able to work those hours again, i have post concussion syndrome, post traumatic vision syndrome and vision mid line shirt syndrome. I can only Read and watch TV for limited amount of time and using the computer gives me a headache after about a half hour. It. Can get discouraging thinking about your future, but i am happy to know i have a future. I also believe that i set an example for my children with what do we do when adversity hits because it will happen to everyone. You have to create a new reality for yourself, i am not the same person i was before my accident but i am going to make the Best of what i have.
I may have to look at a new career or total disability but i strongly believe i have learnt alot and met some Pretty outstanding people through the process. It still amazed me how many people have reached out to help. I still believe i am very fortunate in life, i just have to accept that i am not as strong and independant as i have always prided myself on being |
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| "Thanks for this!" says: | MiaVita2012 (05-05-2013), Mokey (05-04-2013) |
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