I have met some real critters over the years - unhelpful is probably a kinder way of saying, 'sheer incompetence'. Well, I would say that an occupational therapist would be better. I see mine once or twice weekly at my home. She has literally been a saving angel to me - she knows everything about TBI and finds practical ways of helping. She helps me to feel good about achieving goals but supports me through the rough bits. I did see a therapist initially after my injury for the same reasons that you went but she was hopeless and did more harm than good. I live in the UK and found my O.T through a brain injury charity. Is there anything like that near where you are? They also organised the cognitive assessments. Keep your chin up and try to find someone - it's very hard to do it alone.x

It is very hard to accept the changes, but you have a good positive outlook. My first tbi was in the early 1990's, I think. Sure not before.
Some things keep improving, some we have to learn to sort of find our way around them. We all wish we could be as we were, but were not. I seldom watch a repeat on tv, as don't remember lots of things, or where I put things, or did. Being positive will help you, we have to be, only way to cope sometimes. I gave up on Drs a long time ago. Had a couple of really decent ones, and some who haven't a clue what its really like. But they haven't walked in our shoes. Only read the book.

I take my sister in law to all my initial psych appts so she can be my memory for me. I want them to know how good my life was before- so they have comparisons from a credible source. I'm bipolar on top of having TBI so I need the before and after but it does depress me too. We all have the same issues mor or less but the same. Thank god we have eachother

I agree - I've relied on this site a lot and it has given me a lot of support.

My experience has pretty much been the same. My TBI was just over a year ago. I have the same problems as most of the people on this site. This is a great support for advice and support!! I have been discouraged and let down by many doctors for TBI issues. I found more help on this site and other brain sites. Try finding therapy and maybe a support group. I totally understand your frustration and wish you the best.

I do. I have in the past and was so discouraged I just stopped going for some years. One doctor who read all my complications, through my file down and stomped out of the room. "I can't help you." Doctors like easy things. I don't find them very bright, or maybe they're not very creative in their thinking. I was thinking about telling my psychiatrist a lot more about my neurological issues than I ever have before, because I'm having some bad symptoms. He's fairly new to me, and my fear of doctors was so great that my first visit to him I had to take two Ativan and still my mouth was so dry with fear that I was stumbling on my tongue. But he's nice. Real nice. Now I feel I can tell him. Next week. Maybe he knows someone who isn't an ass who can do the deep neurological testing and treatment that I need. Maybe not. I'll give it a shot. (Every neurologist and neurosurgeon I have met seems to be crazy; I have hope that there is one out ther who isn't and is willing to take on a big problem and do me right. ) Oh, one lady neurologist and I were having a conversation and I had been looking over the brain parts and what they do before I went in and must have been taling too intelligently because she got mad at me. "Do you think you are smarter than I am?" "No, I'm just talking." Sorry about the crap you've been through. I'm sending postive thoughts your way that something good happen, and soon.

Hi Moni, I'm sorry you're having such problems. Good doctors are hard to find, especially ones that understand brain injuries. Was this a psychiatrist or neuropsychologist you went to? I have found that it's the neuropsycs that have helped me the most . ( I've never had other supports, like occ. therapy) . I have copies of all the neuropsyc tests I've taken, and they're helpful in understanding what is happening. (The last one said "The patient has been told not to be surprised if she loses more visual memory" , so I'm not surprised as I Do lose more and more ) .

I was blessed with a wonderful neurologist while in college. He taught me all about my body ( organ systems and all) " so you will know when something is wrong". He also taught me how to research meds , and how to know if something is working or not. "You know your body more than I do ; it's your responsibility to tell me what is best for you."

Then there was the major lesson he gave. He said "I'm going to show you how to evaluate doctors so you will know within 20 minutes if you can work with him/her or not". He actually role-played with me! Because he taught me so well, I have seen 3 doctors that I have never gone back to ( over 20 years) . One tried to change all the medications i was on - I was stable at the time and was not going to change a thing. I've also been with a doctor for 6 months, and finally told him it wasn't working , and left him . He was a psychiatrist that always asked the same questions: " are you suicidal? How's your sex life? " and one other I can't remember. I traded him in for a psyc that doesn't counsel me, but rather works with my meds to make sure they are performing the way they should.

It's taken upwards of 20 years to get this wonderful team ; a psychiatrist from Ireland, an endocrinologist from Poland and a kidney doctor from India. Perhaps that's the key for me- foreign doctors! There are doctors out there that know what they're doing. It , unfortunately , takes us looking for them , and a lot of trial and error. Remember, you are paying them, so they should meet your expectations. If they don't , follow Dr Erba's admonition ( the doc who taught me all these lessons) and don't go back to them. Ask them for a referral , and go from there. I really hope things improve for you, and you can find the help you need. I think we all can understand what you're going through.

I was failed by the medical system from the day i got hit with the iron bar .
I have found making a list is about the best tool to use for doctor's .
Also get them to write things down as our memory isn't as good as it was in most case's .

I tell all my doctors to study brain injury as most seem to know very little here in Australia.
Theres a huge expense, but a Neuro Psychologist early in my recovery made a great report i carry with me to a new doctor.

Unfortunately we all have different injuries and we all heal and recover in our own way and time. this makes a caring doctors job hard as its a changing patient as we go through it .

We all need the support of a real doctor not a Dr there to just write scripts for a cold or flu.

Thank you everyone for the feedback! As horrible as it is that we're all dealing with this.. atleast we're not alone =) I hope one day brain injuries are less complicated when it comes to getting help. It's really a shame how many doctors have told me there's nothing I can do.. when they were clearly wrong. I think optimism and creativity goes a long way.

My doctor that I was referring to is a psychiatrist. He prescribes the anti seizure medication I take that has helped me remember immensely. He wants to take me off of it.. and I have no idea why. ugh! I'm going to try a new approach to my visits with him. I'm obviously doing it wrong lol.

I'm going to try to find a new doctor though.. preferably a psychologist or a neuropsych. (I've been to both in the past and had absolutely no luck). But.. If I'm anything, I'm not one to give up =)

Thank you again for the support and input. I wish everyone luck!

I am so glad to reply to this topic. Ha. i have so much experience now. Most of it wasn't brain doctors and neurologists becase my complain was severe chronic pain from my head / neck injury for the first 12 of the past 20 years.

The tbi stuff wasn't even considered until i beat the pain. The pain was beat years after i gave up on expecting help from the 24th doctor. That 25th doctor helped me proundly in a matter of 4 days.

He is a Naturopathic (ND) and Chriopractic (DC) and his little procedure corrected what caused my pain at the source after 12 years of 24/7 agony. It was better than 90%. GONE on the 3rd day of treatment. Though at the time i was off the morphine and in full pain, for the prior 9 years i'd controlled the pain with opioids, so that i could sleep. The pain was so bad, without meds i couldn't sleep.

In the following months i came to realize tbi was part and parcel all along. the thinking problem i'd had, i blamed on the pain. I can remember thinking to myself, why can't I think, it's just pain. haha.

I'm 8 years into recoverring from 12 years of constant debilitating pain. I've only known about the tbi part for 7 1/2. I spent the first 6 years in the commercial health care system. then 6 in the VA. The VA was so much more concerned with ME and not the money, that the difference in care was, well, i'd never go back. The commercial doctors routinely made me, with severe neck pain, sit for an hour or more in the waiting room. Suffering. The VA rarely ever made me wait more than 15 minutes. That's the difference when the patient is foremost compared to the BILLING$ being foremost. The VA was ineffective in treating me as well, only proving morphine for the pain, not a solution to the source. I found that on my own after many years.

That treatment that ended my pain? i had another one 9 months later that reduced the pressure of my skull on my brain and gave me a lasting and powerful cognitive boost. It was restorative to my thinking. I still need more, but i remember how powerfully it improved my thinking and congition and abiltiy to use my mind. I rarely tell this because it's just so hard for people to believe, but i experienced it. Happy to expand in detail if anyone wants to know.

Great topic, Monilynn

Harvey

I hafve to gree with everyone. But I have one doc that had me mad for a LONG time, and has put me off a certain kind forever (unfortunatly, because I REALLY need one): Just a reg dr. Like a family dr.

The incident happened like this:

I go in for my first check up with him, and everything started right. eeg, questions about health, ect. I told him about the TBI and explained my memory prob. He asked the normal questions.... Do u smoke, drink, drugs. I said I do smoke, and his responce was this.....



wait for it, its a gd one



"Well you remember to smoke, so your memory isnt THAT bad is it?"


I walked out and have yet to go to another one -_-

Harvey, I'm glad you've been able to find some relief! After all that time.. it's pretty inspiring. I hate that you went through that for so long, but at least you did eventually get some help =) Optimism is key sometimes.. and incredible patience.

Jedoispartir, I can't believe your doctors said that to you! I can't believe what a lot of doctors tell me.. because it's so incredibly dumb. I had a neuropsych actually convince me that I should be suicidal and depressed.. when I explained that I was actually going through a lot but was optimistic in finding help and would do anything to get better. She went through everything that was wrong in such a negative light that I actually went into a tailspin afterwards and began seeing my life as useless.

I think doctors need to be more aware of how they can effect people's lives. There's a woman named Anne Forrest that suffered a mTBI... and she travels to make speeches to doctors to tell them that after 10 years, she is still improving. She had doctors tell her that 3 and 5 years is the cut off for improvement, and beyond that timeframe you just need to cope. She made it her goal to inform doctors that hope is important, and that the deadline is inaccurate. Her speeches center around telling doctors to treat us better and give us more hope, because that can make a huge difference.

I think coming across gravy train runners, basket case therapists and downright incompetent folk in the field of BI is a given in any country but out of the blue will come someone versed in the nuances of TBI and they are worth their weight in gold. Networking often brings these experts to your attention. We have noticed that as a general rule if
they ask lots of questions then you've got a good one.
Mad oak you commented that your OT has some great ways of practically helping you, would you like to share these? I mentioned a while ago how a see through shower curtain helped my son. I mentioned this at another assessment he had last week and the OT was most appreciative of this as it was new to her. By sharing we often help so many others.
I also quoted someone from this site who posted that as a person with TBI "We just get on with life adapting to suit ourselves as we often cannot remember what is normal." With a different line of questioning from this assessor we learnt that clocks, photos etc on the wall are constantly in motion for our son, this 16 years after first injury! As he said no one ever asked me before and life is now that I don't always remember what it used to be like, what is or isn't normal.
Monilyn don't give up, that one that you turn down might just be the one but hey me thinks we can all understand if you do give up cos 'there sure are some real dicks out there' as my son would say.

I have encountered some that were very good and some that were ludicrous. I have had no problem quickly dismissing the latter. I have dealt with doctors/neurologists who have a "...this is as good as it gets..." attitude and some that haven't even kept up with the new techniques/adaptation strategies that I have. Since the Iraq/Afghanistan wars there are many many many more cases of TBI being presented. Maybe now they will take time to pay attention to us.

The first doctor i was ever referred too for testing, sent me away within five minutes, stating that since i am walking and talking, there was no possible way i could have a TBI. If i could go back in time and show them the conclusive data, stating otherwise id slap it on their desk and demand their medical licence in return. sadly they are in CA and i no longer live there and can not remember their name.