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Thread: What does SSA consider treatment for long term brain injury? CDR fears...

  1. #1

    Default What does SSA consider treatment for long term brain injury? CDR fears...

    I'm really concerned having gotten a CDR short form and learning for first time which of my 18 or so conditions got me on disability. Was startled to learn that my physical ailments are not listed as either primary or secondary code because I am so crippled up and had documents from over a dozen doctors to prove it. To me the physical ailments are worse because I mean I am in pain 24/7, can't sleep and can barely walk. Now I am concerned because after my psychologist cut me off treatment as soon as I got disability because she didn't take Medicare I hadn't seen a psych since because she said Medicare doesn't pay for therapy. Now I wonder if she just meant none did in the town I lived in. I had to move closer to my family in another state so started over with doctors. Now after doing some reading it appears I am suppose to continue treatment for having a TBI and also complex PTSD even though my therapist said there was nothing more she could do for me anyways even if my regular insurance had continued. PTSD getting bad again so am seeking out a therapist and having a hard time finding one who will agree to see me for PTSD just because I have a brain injury. I did find one listed in my new town who takes Medicare but not sure I can afford the copayments to go often. I had a hard time finding a medical doctor when I moved here and tried 6 months to find anyone before finally finding a nurse practioner who would agree to see me after I literally broke down bawling in tears in a doctor waiting room because I was out of thyroid medication and NSAIDS for my crippling arthritis and autoimmune illness. He is only one I have seen because everyone else I called said they weren't taking new patients or they weren't taking medicare patients. I live in a rural area so there aren't many options.

    Anyways sorry for the long story but figured you all needed the back story. Here's my concern my nurse pract knows about my PTSD and TBI because I told them. Course I don't know if they documented it because I always have a list of complaints everytime I go in. He never advised me on the PTSD or TBI as far as any treatments he wanted me to do, etc. I did ask aren't I suppose to be getting counseling or something for the PTSD to show I am trying to get better? He said I am counseling you now on it. He did offer me some kind words and told me to how to try to stay calm and don't push myself too much. Now I am scared over my benefits because I got the SSA review form. I really would love to work again as I really miss working as I loved my jobs well except for the last one that fired me because they said I was a slow learner and not physically able to do the job. But that gets to my point I have short term memory loss and attention problems because of the TBI which is what caused me to get fired from last two jobs. But as far as I know there is no long term treatment for TBIs or memory loss issues. So what am I suppose to do in SSA's eyes to get better from a TBI?

  2. #2
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    sorry you aren't getting any replies. many people here are on disabiliity so don't fret. were you in the service? they should help but realize what should & what does happen are different.

    mental health issues seem to open the door fo many people.

    as you know TBI can take years to improve-try to be patient.

    sorry I have no direct knowledge of SSI,I do think they check boxes-might explain the 3 yr thing. so don't fret over this! just be glad you got appproved & get on with your life the best you can.

    not any help here.just some encouragement. take care & please keep posting. Pati

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    Quote Originally Posted by Buttons2 View Post
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    sorry you aren't getting any replies. many people here are on disabiliity so don't fret. were you in the service? they should help but realize what should & what does happen are different.

    mental health issues seem to open the door fo many people.

    as you know TBI can take years to improve-try to be patient.

    sorry I have no direct knowledge of SSI,I do think they check boxes-might explain the 3 yr thing. so don't fret over this! just be glad you got appproved & get on with your life the best you can.

    not any help here.just some encouragement. take care & please keep posting. Pati
    Thanks for the welcome. I wasn't in the service. I had several head injuries, seemingly mild to moderate, from sports then accident, a fall, so I think after all that the problems just started multiplying. Like after the sports injury I noticed I seemed a little "slowed down" in my thought process with problems concentrating and being disorganized but I didn't know to complain to doctors about it as I saw it as a character flaw. Looking back I did have a change of personality which I didn't realize, but I know now that is a strong sign of a TBI. I went through some occupational therapy for the TBI but couldn't get insurance or voc rehab to cover it for long. Its like if you aren't bleeding from the head the doctors just abandon you as far as not offering any form of help. Its stress full because family and friends don't understand and its hard having to hide the secret why I am on disability and the fact there doesn't really seem to be any help for TBI'ers yet disability expects us to be continuing treatment. What kind of treatment?? There is none for the long term issues related to memory. I mean if there was they would have cured all the old folks of Alzheimers by now!

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    OK,as you've noticed not much activity here lately. do you mind if I ask how old you are? sorry you are suffering so much. I fell last month & hit my head on a rock -got a nice concussion. hard for me to type cause keep hitting the wrong keys. looking back to the several falls I've had I now am convinced it's been one concussion after another (different parts of my old brain) just never realized what had happpened @ the time.

    you are right-unless you are gushing blood who cares? and nobody can possibly understand unless they have the same experience. my doc can't do a darn thing & I don't expect him to. time is the healer. and patience. sleep rest of my life away I suppose.

  5. #5

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    Quote Originally Posted by Buttons2 View Post
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    OK,as you've noticed not much activity here lately. do you mind if I ask how old you are? sorry you are suffering so much. I fell last month & hit my head on a rock -got a nice concussion. hard for me to type cause keep hitting the wrong keys. looking back to the several falls I've had I now am convinced it's been one concussion after another (different parts of my old brain) just never realized what had happpened @ the time.

    you are right-unless you are gushing blood who cares? and nobody can possibly understand unless they have the same experience. my doc can't do a darn thing & I don't expect him to. time is the healer. and patience. sleep rest of my life away I suppose.

    Sleep is good for healing the brain, provided one can fall asleep which I have trouble with. A few supplements and foods are said to help though nothing is proven. Thing is SSA expects us to be seeing a doctor regularly for our TBI in order to prove you are trying to get better. So apparently we are suppose to just pay the doctor to do nothing just so we have a record even though there is nothing the doctor can do for long term treatment of a TBI. Sure I see the doctor regularly, but its for physical problems. You asked my age I'm 44. I have heard people who get even mild TBI have a tendency to keep getting them probably because of clumsiness or lack of coordination caused by the original injury. I've bumped my noggin I don't know how many times since. Like I reached down to pick something up then whacked it on some furniture hard enough to go out for what I think was just a few seconds. It was just like everything went black like somebody turned the lights off then I shook my aching head and found I was crouched on the floor. Just a few weeks ago my car door closed on me and sent me into the side of the car whacking my head hard again to the point I was nauseous that night and next 2-3 days on and off even though I didn't think at the time it would have been hard enough for a concussion. Yet I had the nausea plus terrible headache that wouldn't go away and dizziness and wanting to sleep for over 9 hours straight all signs of a concussion from what I had learned in the past.

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