My battle is still on for my son. What other types of doctors do you see besides a neurologist? One of our MANY problems is that his ex is trying to take away his children due to the accident and his TBI. We have just now got disability and that kind of paperwork completed. Now his lawyer is wanting him to see a specialist who can “tell us” when he can expect to return to work, start driving again, etc. In other words, when will he recover. I tried to tell the lawyer that ONLY GOD KNOWS these answers. Those of you with TBI, what kinds of doctors do you see, are there ANY tests that they can run to determine the extent of his injury? Also, because of ALL this LEGAL stuff he’s having to go through, his anxiety is unreal, he’s afraid he’s going to having a heart attack at times. His family doctor doesn’t want to put him on anxiety medications due to all the side effects. His neurologist said that wasn’t her department!!! But my son keeps insisting! He may not be his old normal, but he is still a terrific father and his children love him dearly. For them to be separated would be devastating to all. None of them should be punished for his disability!!! My heart is breaking right now! Just when it looks like we get one thing taken care of…five others POP UP! We are sooooooooo tired and stressed!!! Any suggestions, advice or answers would be GREATLY appreciated!
I’ve been doing lawsuit lawyer stuff too. It stresses me out to no end. Here’s a general idea:
I don’t know all the names but general idea
This is long sorry.
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Your going to see two nerologists one for each side
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Probably two nerophycologist idk the spelling people for each side. They’ll do cognitive testing. My first test took 8-9 hours the other took 5-6. You spend and hour or two going over you life history. Then they do tests like repeating stories lists numbers facts making shapes match from blocks a test with letters flashing on a computer for attention pattern stuff and a flash book of objects. Do your best but don’t push yourself. Also a personality test that is honestly stupid. It’s not exactly… difficult. It is. But the testers are usually very kind.
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Two economists cousler people…they just ask you about your challenges and plans and blah blah blah. You just talk to them for 2-3 hours it’s boring. I made them come to my home. The first was very rude. The second was great. You never know.
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A deposition. The other side will ask you questions and again you’ll repeat your whole life and challenges and symptoms. Mine took 6-7 hours. You and your son will both have to do this separately.
5.Youll see and hear from your lawyer between all these mostly.
6.Keep in mind this can take YEARS. My case has been on going for 4 years. This is not a easy or fast process. Unfortunately.
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Make sure your lawyer understands your needs. Lawyers tend to not get our injury and think we can be man handled like regular clinets. They wanted me to travel 5 hours for the deposition. I put my foot down until they made it 15 minutes away. Jerks. They will make you travel long distances though. I had to spend a night in a hotel but the lawyer provided a person from the office to help me get to where I needed to go and understand things. This was with much pushing and resistance to get them to understand I had no faimly to do this for me.
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It sounds like maybe your son is having panic attacks? This thing is so stressful it’s understandable if he is I definitely have them from it. That’s why the doctors probably don’t want meds. And nerophycs don’t usually perscribe. I was told I needed anti sezuire meds but he couldn’t give them. Obviously not a doctor just based on my experience.
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I can’t really give any advice about costdy
stuff because I don’t have any kids and I’m single. I’m really sorry that’s happening though. He’s lucky to have you. Many of us have had big rifts in faimly because of this. It’s not fair at all. Hugs.
Oh. Adding. The nerophycologist. They don’t tell you when exactly you can do things again. They can tell you if it’s realistic though. If you get a good doctor they can actually help you understand your injury and limitations better. I’m glad I went to the first nerophycologist. The second was pointless though. I did much better I feel than when I went to the first a year ago.
Also to answer your question yes there are tests that can help your son understand they extent of his injury much better and explain why things are how they are.
Like for example I get car sick now never did before. Why? Doctor explained because neurons in the middle of my head go cut off and died but now they just sit there and carrides make them go sloshy sloshy. Makes me sick.
Why I fell asleep randomly and slept for days on end and other times didn’t sleep for days? My alpha beta waves were too active. (Found doing a…test. I wore a cap that like…sensed brain activity or something…it mapped my brain working watching a 15 minute movie and 15 minutes in the dark with my eyes closed)
Just examples of things they explained from it. It really will tell you a lot if you get a good Dr. My doctor was Dr. Gabrielle Newman in MD. Very good Dr.
You need an attorney that specializes in disability cases. Other attorneys have no clue of what your son is going through physically. You also need to look for an outpatient head injury clinic that is associated with a head injury rehabitation clinic. Your primary care physician has no clue about how to deal with this kind of traumatic injury let alone how this injury interfers with normal body function. Check online for a peer group for you son to go to. It will help him develop stratigies of coping with his new life by learning from what others have done.
He may never go back to work BUT that does not mean that he can not be a good father and take care of his kids. Each persons injury is different BUT the sooner he finds a peer group the sooner he can deal with inappropriate anger issues and learn to deal with what life has given him more easily. He also may never drive again as each case is different…ther are very few people like me that can endure multiple TBIs and anoxia and still ride motorcycles either. It can be a series of baby steps to get to his goal.
Hey Debbie,
Sorry to hear that the battles are continuing, but I’m not surprised. The question of “when will he recover” is a bit like asking “how long is a piece of string?” as there are just too many variables.and depending on the dr/specialist you see will depend on the opinion you receive. Over the years I’ve seen 8 differing specialists and gotten 8 differing opinions. Now, I say ‘opinions’ because that is exactly what they are. Every dr has their own views and as every brain is wired differently they can only give a general guestimation on how an individuals brain injury is going to affect them. I have had them tell me everything from “they have operated, they have fixed” right the way thru to “You’re screwed”. Because the opinions can vary so much, my advise would be to find one who may give you the opinion you want and use their specific report for that specific need. For example I applied for my SSI disability but the dr I saw stated I was OK to return to work (I wish) and my SSI application was rejected. I also applied for my insurance, the dr the insurance company sent me to stated I was screwed and the insurer paid me out. When I next applied for SSI I used the insurers dr’s report and my SSI was then approved.
As for the dr’s I have seen. I’ve seen neurologists, neurosurgeons, neuropsychologists, dietitians, physiologists, naturopaths, optometrists and acupuncturists and each has given a differing diagnosis and differing recommendations. Now I’m at a point where I have given up on them having any great answers, they are all guessing and my guesses are as good as their opinions.
I have to agree with Caitlin, this can be a long drawn out process, and although you maybe looking for concrete answers, you are not likely to get one you can rely on. My only advise would be to find a dr’s report that can give you the response you need as each dr will have a different view.
Merl
Debbie,
You express, “Also, because of ALL this LEGAL stuff he’s having to go through, his anxiety is unreal, he’s afraid he’s going to having a heart attack at times.” From my experience a TBI magnifies anxiety and fear creates future speculation. Fear is usually about the unknown, in the future tense, and at times fear can be about the emptiness we experience within ourselves. Emptiness or nothingness is closely associated with death and automatically creates a fear. Emptiness and death makes us feel nothing true or valuable in which we can attach ourselves. In death the body is gone, done and finished.
Naturally death is everyone’s deepest fear and your son’s anxiety about a heart attack appears to be his fear about dying. The fear of a heart attack may not be the problem in itself and could be the fear of nothingness which creates the bigger problem. Nothingness creates a vacuum and human nature adores feeling empty. Even those people who have no head injury hate emptiness and is magnified ten times more for those of with a TBI. The fear of a heart attack may be his way of filling in this nothingness, as he may feel he has nothing left in reference to this world. There is nothing left to which he can attach himself.
This emptiness or nothingness is threatening, unpredictable and ultimately meaningless. A state of inner emptiness fills the mind with terror. The mental connections can then go haywire and can create paranoid delusions. From my experience this emptiness makes the madman attack and I will relate things which have no basis in fact and yet I am absolutely convinced they bare my fear as fact. I can deteriorate into being truly crazy and insane paranoid delusions. My thoughts become uncontrollable, scaring me when I do not want to be sacred. My mind races wildly and I will become terrified by fears, which I cannot escape since these fears originate in me.
Fear fills in the emptiness and behind this empty mind is this nagging feeling something is missing inside. Fear does not want to face the enormous gap between who we have taken ourselves to be and who we truly are. Truth is hard to face, as we all live in a web of illusions, even doctors, lawyers and all professionals. So what can you do for your son in his illusions and anxiety is to suggest he needs guidance to accept uncertainty and ambiguity. Gently guide him to accept life struggles and these struggles do have meaning within them. Try to guide him to have faith in his future and faith in human beings. Then try to tap into his compassionate side within him. This compassion may help to develop serenity from within, create peace and anxiety should subside.
Your son in his anxiety appears to need peace and when he is extraordinarily peaceful it will help him feel alive. This will also help him get in touch with his thoughts, feelings and desires. Peace and serenity will help acquire a new depth. There are direct systems to create peace such as yoga, meditation, acupuncture and possibly therapy. Twelve steps, such as emotional anonymous may also help. So maybe help your son realize his conflicts and flaws are not unique to him, as it is just his pain screaming out to be released. It just seems he needs an “opening”, a place to begin, then peace and trust can be built.
Thank you Debbie for your support to your son and to all of us. Your precious concern is the goodness of your heart. Also Debbie these suggestions for building trust in the future are for you also, as you appear under deep stress.
Your presence is significant.