Hi there - I am hopefully responding to the person who just posted about losing her sight... I'm so glad you reached out! Sounds like you are going through an incredibly hard time and I'm so sorry! If you can, tell us a little more about yourself. It must be so scary to be losing your sight. Is there anyone helping you? Please write again when you can. There are a lot of caring people who want to help in any way we can. :)
Hi it has been along time since I posted, here is the thing. I bumped my head yesterday an the morning. I got a bruise that was the size if my thumb. Thought it was trouble but my familiy not. I can not drive because blindness. So I decide in my true fashion to ride it out. the buise has moveed though. From the middle of my head to the part where my hematoma was. I can not speak loudly of I FEEL AS IF MY BRAIN IS RATTELING. I DO NOT HAVE ANY MONEY. wHAT SHOULD I DO. Sorry about CRappy text but but I have a very ill child and do not know what this means. Could a bump on the head create thid of trouble. I am afraid to slepp. I try not to complain but I am scared
I can tell you that my experience with neuropsych's have been pretty worthless. What they do appears to be more art than science, and unless you have the rare luck of finding a good one -- if they exist -- they don't add a lot of value. I have a huge problem with their methods for assessment and how they draw conclusions.
I've never had a neuropsych tell me that I was faking or malingering, but I can imagine this would be extremely frustrating... especially is some kind of benefits etc. hinge on what these witchdoctors say. I apologize to any neuropsych's who may read this, but I can tell you these perceptions are real and have validity.
Other than telling you "I can relate", maybe the only advice I could give you is to keep seeking help from medical professionals until you find one that is expert in dealing with TBI and will take what your husband is experiencing more seriously.
Thank you for the comment. The neurologist of second opinion actually sees he has a problem and ordered another test that hasn’t been scheduled yet. Also have found that he is having seizure activity where the brain injury is so that is not helping things. I don’t understand why this neuropsych test is so important to prove your brain injury when it’s documented in the medical records and still having problems. From all the research I have done there is no absolute way to rule out a TBI. Sorry to get long winded but this is so frustrating and complicated and I am a nurse x 27 years I can’t imagine how caregivers with no medical knowledge feels?
"I don't understand why this neuropsych test is so important to prove your brain injury when it's documented in the medical records and still having problems."
I agree completely... I've never understood this either. The fuzzy evals that the neuropsych does might be helpful at best as a secondary source of information that confirm the extent of damage done, but they should in no way supercede or trump what documented medical records (treatment of injury, operations, CT scans, MRIs, EEGs, etc.) say about a very real injury. I would imagine somebody at some insurance company that knows nothing about TBI is making these stupid rules.
I really empathize with how frustrating this is. You have enough to deal with without having people fighting with you saying what your husband (and you) are experiencing isn't real. I don't know where you live and what your access is to more competent medical professionals, but I highly recommend using your networking resources in the medical profession to locate someone who can really help you.
Well I have taken it into my own hands and start Monday with our own doctor using my insurance and not worrying about workers comp. We just want help and not the run-a-round like we are getting. He is depressed, very on edge, can’t smell, dizzy, eyes water, PTSD from the wreck and scared to death to even get beside a big truck when we are going down the road, not to mention the memory issues and his thought processing, he has hot flashes and lots of headaches. He gets confused reading directions like on a hamburger helper box. Another thing that isn’t logical is this test supposedly shows “he is faking” but they still won’t let him drive due to his memory and dizziness and processing problems so he has not driven in 6 months.
Yeah, the only way to make things happen (any I'm speaking for my wife here mostly) is to take the bull by the horns, be assertive, not take no for an answer, keep searching for resources and help anywhere they can be found, and just be pro-active about everything (which is totally not her style, but it's what she has had to do). So, yeah, just move forward. (I don't know about giving up entirely on a worker's comp. claim, but you are doing the right thing by not letting it slow you down.)
I have many of the same symptoms you mention that your husband has. This is one of the most intriguing things about this whole experience... as I have met and chatted with others who have TBI, even though the causes and specific outcomes of TBI are quite unique, there is usually a fairly large sub-set of symptoms that we share in common. So I guess I would say, the things your husband experiences and the difficulties he has coping with them, and the problems this causes for you -- all of this -- is extremely familiar to me and my family.
Yeah, so as hard as things have been for me, in many ways I know this whole thing has been harder on my family, especially my wife. In many (most) ways she doesn't have the husband she married anymore. Knowing this and feeling guilty about not being a provider anymore, not being able to help much, just makes me feel worse emotionally -- it's extremely depressing, discouraging, emasculating, etc. The only thing that has been able to help is for me to find some ways each day in which I can do *something* to help out, no matter how small, and finding solace in that. Still trying to be a loving husband and father, and in some way being there for them, is the primary solace I find in pressing forward. I don't know if this helps much, but you can at least know others share your struggle and that it may not be easy, but it's possible to make it work, and worthwhile.