Why Do We Have To Do All The Work
 

Why do we TBI survivors have to do ALL the work to find every specialty MDs to tend to our needs?Or was it just me that had to do everything?I mean we are dealing with a banged brain, horrible symptoms, neck & back problems, suppose to no stress, rest, and emotionally keep heads up.

But I still do not know to this day understand why I had to keep searching and finding what I needed, While I suppose to be working on getting better?Well I am happy to say I got my speciality MDs on a team and I am out of the acute stage so now I should be able to really start my rehabilitation:winky:

The rainbow at the end of the thought to be never ending storm:grouphug:

I know!
 

It was like that for me too. Such a struggle! It makes no sense for it to be that way.

I know exactly what you mean. You would think (and I did but learned better) that doctors would tell you what kind of specialist or treatment to try but no they just leave it up to us. I have not been able to figure out how to get myself help with my brain not working. If your lucky you have a spouse that helps you but if your on your own it is so stressful. I would of been so grateful if any doctor out of all the ones that I saw in the hospital and out would of said -you know you need to see a neurologist. I had no idea what kind of doctor to go to. I had pain so went to a pain specialist. I am so glad that I have found a team of people to help me now, or at least direct me as to what kind of treatment I need to have that may help to get me functioning again. So this is a warning to anyone newly injured or in need of a diagnosis or treatment - don't count on the medical community to direct you in any way. It is up to you to find the correct treatment.
So frustrating.
Brain

Agree. All of the insights and ultimate diagnoses of deficits came about as a result of our own advocacy (my spouse and I). Very tiring amd depressing. Still doing it as I feel there are still a lot of issues which are unaddressed.

I need to say thank you
 

I need to say thank you VERY MUCH to someone on this board that helped me get direction and a better understand of what each speciality MD was for because I was clearly lost in Dec:hug:

Glad you now have a good team on board.

I was lucky in one respect, my accident occured about a mile from a hospital that is one of the top 10 neurological hospitals in the country (Barrow's neurological institute at St. Joseph's in Phoenix). I was in good hands from the start. Best to you as you continue to recover.

:hug:

This thought has occurred to me many times over the last four months.

Without this forum I would still be even further in the dark with respect to what I should be doing to recover because my medical care has been atrocious.

I cannot fathom earning a degree and emerging from schooling as clueless as the doctors I have met. It just floors me. The audacity to suggest every other possible cause under the sun for the symptoms when a patient presents with classic PCS... Maybe it's depression, maybe it's this, maybe that. Anything BUT the pink elephant in the room.

I have to fight the urge to say maybe it's a direct result of a brain injury, you absolute moron. I may not be firing on all cylinders right now but I can connect dots.

Anyway, I digress into ranting when this topic comes to mind. Any respect I once had for the medical field is down the tubes since injury. And the so called awesome socialist medical system we have in Canada really affects quality of medical care... With no motivation to keep patients, doctors get even lazier. If it can't be cured with antibiotics or blood thinners, they are truly stumped and apathetic to try harder. They have more than enough patients (easier to treat than us) to keep them feeling justified in their Lexus.

Any progress I will make in recovery will be due to my own strength and the information I've learned from here. So thanks everyone.

Agree
 

I totally agree I had many issues in the beginning and had to find my own specialist. I am 3 months out and I finally start therapy tomorrow with a nuero-psychologist. I am very excited to continue my healing journey.

Daily I find something to smile about no matter what.

Thanks for sharing and I wish you all the best. :)

I think the biggest reason we need to do all the work is because there is not much the doctors can do besides confirm a diagnosis of concussion and hopefully direct us to knowledge about work-arounds, accommodations and other coping skills so we can try to move forward.

It would be helpful if they would think outside the box and refer concussion patients for diagnostics of upper neck injuries and hormonal imbalances.

Since concussions are not imageable, doctors are often stuck with insurance company policies about referrals to specialists.

The Brain Trauma Foundation has been tasked with defining the diagnostic procedures and standards for a diagnosis of concussion for the U S Dept of Defense.

Unfortunately, since there are no drugs approved for treating concussion and none being developed, there is not a big pot of money to make so there is a weakness in the care system. Big Pharma and Medical Device companies drive much of health care.

The recent proliferation of Concussion Clinics is being driven by the school sports industry and Computerize Neurocognitive Evaluation companies. This has created a very profit driven model with return to play as the goal. Those who don't fit into the return to play model are left out. Unfortunately, the return to play model has not led to true concussion recovery protocols, just a "recovered enough to return to play" protocol.

This system leaves the rest of us to fend for ourselves.