Hello everyone! I have been very busy over the last 3 weeks and haven't been on here. I was just reading some posts and it made me want to ask all on this site ...do all the TBI survivors here see a Neurologist? My accident was in Nov 96...2 weeks in coma, 2 months in Rehab and then 4 months of out patient rehab for Physical, Speech, Occupational and Cognitive Therapy. I am embarrassed to say that as soon as I was discharged in '97 from all the outpatient therapies.....I never went back to any of those docs for follow ups or anything....however I have seen General Primary Physicians and nonchalantly mentioned the accident.... and they have prescribed anti depressants, and xanax and other things.....mainly cuz I complain about the fatigue, overwhelming feeling that I constantly feel, and the everyday anxiety, I was thinking should I see a neurologist and tell him my story and maybe he will suggest some other "miracle" drug or maybe request a CT scan of my brain? What do u all think?? :)
Hi Southern Girl-
Where are you? Everything you write is the exact same with me...only i was hit by a car in 1997. However, I was life flighted to the trauma center and in a coma for 2 weeks. I tried for years to be like I was, but things just didn't work out for me. I had to navigate this TBI world all on my own, so I have been forced to learn things the hard way. I never continued seeing any of the outpatient doctors once i was capable of driving and being more on my own. I tried to go back to nursing....did not work for me. I tried to live as if nothing had happened to me, but I could only handle so much failure. Finally after years of trying I did not give up as much as i'd like to, i am trying to change the direction of my life. That is so different for all of us. Some make it as if nothing ever did happen to them...i applaude those individuals. My instinct tells me that you and I are similar situations. When I read what you write, I agree wholeheartedly. When working did not seem to work out, i ended up looking for a neuropsychiatrist. All he takes care of is my medicine though. I have come to the point that I need more help. I saw a pain doctor that actually told me about a program they have at Tampa General Hospital, so that is my goal this week. Meds can only do so much for me. I need better help. I am practically in tears as I write this to you....i wish someone would help me too.
Hi Kerry. Thanks for responding....It is so hard sometimes.....I have to work though, I am a PreK teachers Aide...... Do you not work? My husband is very supportive and would choose for me not to work if we could afford it. The Anxiety I have is such a struggle sometimes. :(
Hi Southern Girl-
Let me just tell you that I can totally relate to everything you wrote. After 15 years and going through many jobs, I finally gave in to my neuropsychiatrist who originally told me that he thought it would be best for me to stop working. Being from a family of successful doers, I was so determined to make it in the working world. I just recently got a disability label from the government...but it took forever (about 2 years). So, this is my first whole year of not working...if you can really call it that. Every waking moment is work for us.
Unfortunately my life has been nothing but one mistake after the other. My marriage of almost 10 years ended as a result of poor choices I was responsible for. Then, I am ashamed to say that a man asked me to marry him shortly after my second marriage ended and I said yes. Now I am paying more consequences for my choices. He really needed me to help him with his kids (although his ex has custody) and I needed health insurance. He has two girls 10 and 7 now. I am not succeeding at stepmotherhood and have never had my own children. No one can say I don't try. So, you are very fortunate to have a loving husband. Also, you are totally my hero as you said you are a PreK teachers aide....i would die!!! I am not sure as of this letter where I will end up next, but hopefully we can still maintain contact.
You and your husband should look into finding an attorney that will work for you pro bono (meaning he won't charge you unless he gets it for you). At least get the ball rolling on that and you will eventually get it!!! It is a very arduous process, but since you have a supportive husband it is worth a try. You have to get an attorney to do it for you though and let him deal with all the crap, because it will wear anyone out...do it. I fought that for a long time, but finally accepted what had happened and swallowed my pride. That was very difficult for me, but i wanted to be happy and working was ruining my life.
Good Luck whatever direction you choose to go. I am always here for you no matter what you decide. I have followed things you have written and I feel almost as if you are reading my mind. Let me know if I can do anything to help you or encourage you. This life is an interesting one. The brain injury maze is one of the most difficult things I have ever had to manage. Keep in touch...I will look forward to hearing from you again.
God Bless- Kerry :)
Wow, what an all-too familiar story. Yours is very different from mine, but I know that it is so common. And a lot of people don't get enough rehab or even know that problems can persist. I did not get enough rehab.
If you apply for Social Security Disability you should definitely get a disability lawyer or go to an advocacy agency in your city. Don't try to do it alone! I have been denied twice and am waiting for a hearing. Here's the application you can download and begin to look over if you want to go that route: http://ssa.gov/pgm/disability.htm .
Also, here is a link to a 2006 report from Oregon (my state) that talks about how some people can have difficulties their whole lives that can affect the ability to hold a full-time job: http://www.oregon.gov/DHS/vr/cep/braininjury-stock.pdf?ga=t . This might help you with a disability claim.
Neurologists are wonderful if they are very familiar with brain injury. Some are not. I've tried two. I can tell you there is no miracle drug. But a combination of cognitive rehabilitation, SSRI, medication for sleep, counseling, vision therapy, and leaving the working world has been the closest to a "magic" cure I have found for my own self. I am still plagued by daily struggles, ridiculous anxieties, and fatigue, but I am so happy with where I am now. Some insurance also covers biofeedback, which is supposed to be very nice and very non-invasive for brain injury.
I wish you all the best. It's good you're asking these questions here. So many of us go through so many similar obstacles.
Five months after my husband lost his job, and of course, the health insurance, I was in a car accident, tire blew, I was going 70 on I-40 and rolled over 4 times. It has been 11 months now, I have been turned down by SSI, AZ AHCCCS, and still my husband can't find a full time job , so not much coming in and no health insurance. When you do not have insurance or enough money to cover a doctor’s bill, trying to get diagnosed with TBI by a Neuropsychologist is beyond my grasp. I do have a lawyer that is working on going after the tire company because the tire was defective, but he does not have much of a case without me being diagnosed by a specialist. Probably would not get enough to pay the neurophysiologist for the diagnosis without a diagnosis. Isn't that backwards? Does anyone know of a Neuropsychologist in AZ that would see me with little money down, and maybe small payments until hopefully I get a settlement ? I cannot tell you how humiliating it is to try to explain I KNOW there is something wrong with me. However, not having the money to have someone (doctor) prove it. Going for ssi and welfare insurance was so degrading because they look at me like “you look ok”. I am at the end of my rope mentally and financially. I am sorry for rambling off, guess I just had to vent. One of those days ya know ?
Have you tried your state's Brain Injury Association?
Here's a link to the phone number and email: http://www.biaaz.org/bia/call_Us.html
They have a resource directory, and they will also be advocates for you so you can find the clinician you need to get your diagnosis. They may have some insurance help information as well.
Hi Southern Girl....just curious to see how you are doing. My accident was in '97 and I am about to go for my second MRI. I was also in a coma. Have you ever had an MRI done?