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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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#1 | ||
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Legendary
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My main point is some therapies are better at improving some symptoms than others.
Some have been to Cog FX. The results are mixed. Just like Carrick Institute, the results are mixed. People spend $8,000 to $10,000 and some benefit, some do not. There does not appear to be commonality either way. Some have tried HBOT with the same mixed result. Some claim Low Level IR Light therapy helps. Behavioral optometry has helped some in big ways. This Microcurrent therapy is new. Transcranial Magnetic Stimulation claims benefits. Resolving upper cervical instabilities helps many. At 18 years since my last serious neurological event and 54 years since my first, I'm not a newby either. I've seen a lot of treatments, all with the same mixed results. As they say, every brain injury is different. Is there anything you have found that has helped you? Does the Dutch health system have the same struggle of helping people to improve once they get back to a reasonable function level? That seems to be the challenge everywhere. If you can walk and talk, you do not 'need' more help. Never mind the cognitive and memory struggles we have to endure every day.
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Mark in Idaho "Be still and know that I am God" Psalm 46:10 |
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#2 | ||
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Newly Joined
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Thanks for the summary and succesrates of different therapies.
I read in your other posts about your TBI history, though man. Did you have any therapy that has helped you/improved your quality of life somewhat? Here in Holland it's exactly like what you describe as far as doctors responding to the stuff TBI survivors experience. Even if you have had massive injury, they still don't really seem inclined to believe you are actually have serious issues with TBI that they're willing to really look at. My personal injuries case was closed in 2014 and it's only now that I am reading about the visual problems after TBI and I think, that's me. The case is settled and here in Holland you don't get millions like in the US system. It took a lot of fight and stress to get a number I can live with and it really took its toll on me. The uncertainty and stress of it all. It was brutal. Uncovering that there is some more therapy or there and reading about the vision problems that have remained undiagnosed for so long just makes me so sad. What has helped me...uhm I haven't gotten any therapy of which I can say physically helped me. Only some information about TBI about 7yrs after the accident helped me to understand it more. You see, I was so badly injured that the initial rehabilitation was solely focused on walking again and gaining mobility and function in all of my limbs. The mental fatigue and everything TBI related was just put off by the doctors as due to all the surgeries and medication and the trauma as such (I was with my sister crossing the street when the car hit us and she died right there on the asphalt. I was taken off of respiration the day of her funeral). So it wasn't untill years later, in 2013 when I was at my wits end at a neurologist office asking for a head MRI. This kind doc told me that given my history my symptoms were not strange and was surprised I never received rehabilitation therapy for this. So I got that. But is was only pt, psychologist and occupational therapy. But it was there that I learned I have TBI so that was valuable, especially because I could finally place my own feelings and behavior and start to communicate better to people around me. Although I have discovered a opthomologist or something like it here, I am waiting on the referral now. I have been prescribed bio identical hormones (armour thyroid) and hydrocortisone by an orthomolecular therapist in 2013 and 2014 and that helped a lot, but after taking it up with an endo who really disagreed with that I stopped taking them whilst being monitored by her. She said they are stimulants and anyone would feel better on them. But if taken without indication, it could lead to heart problems and osteoporosis. So yeah. After stopping she said my hormone levels were fine. I can't do half the stuff I could while being on the hormones unfortunately. I feel like people, in my environment at least, are struggling to deal with me having a permanent disability, especially one they can't see. I feel like I am moving on as best I can, not trying to linger in the past or anything, but the physical impairments just take up so much energy that I just cannot do a whole lot of stuff before my head hurts so badly I can't do anything anymore. I feel at this point that no one really cares and just text or send me a nice card saying, "thinking of you" or "how are you?" and I just don't know what to respond like anymore. I'm not fine and no one cares to lift a finger to help with anything or takes the effort of helping to look at treatment like fi this vision thing. Sorry for the rant... |
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#3 | ||
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Legendary
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Yes, you sound like the classic "You look great. Why are you complaining?" person.
We are the invisible walking wounded. I am so sorry to hear about your sister. Few in this country receive anything close to adequate compensation for injuries in vehicular accidents. Most drivers do not carry more than $100,000 in coverage. Only commercial vehicles carry higher limits such a $1,000,000. Most who are disabled end up on public assistance because the at fault party did not have enough insurance coverage. I have a friend who got a $1,000,000 claim payout but her vision will never be the same even after 2 years of therapy. One of the problems those around us struggle with is understanding what is wrong. We often do not understand what is wrong. When we can break our struggles apart and see the individual struggles, we can often better manage them by moderating our expectations and tasks. I don't expect my memory to work. I don't expect to understand a complex subject unless I can receive the information at my pace. Over-stimulation or excessive stimulation during a task can be the end of that task. Learning to stop to think is the greatest skill we can develop. Do you have behavioral optometrists that offer rehabilitative vision therapy? Have you looked into a Carrick Institute trained chiropractor? There are a few in your greater area. They call themselves functional neurologists.
__________________
Mark in Idaho "Be still and know that I am God" Psalm 46:10 |
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