Other TBI

[Fadeaway]

It's been a year and a month since my traumatic brain injury, I am still struggling something fierce but no one will take me seriously because the PTSD. There is no doubt in my mind that I'm a completely different person as a result. How do I get a doctor to take me serious and refer me to a neurologist?

 

[Friday]

How do I get a doctor to take me serious and refer me to a neurologist?

Don’t give them too much information. Keep it simple.

I had a head injury a year ago, was diagnosed with a TBI, but I don’t have a neurologist right now & need a referral. Do you know anyone amazing? (Or a practice with a good reputation, if you don’t have any stellar brain guys in your back pocket?)

They MAY ask you for details of what happened, or who diagnosed you... keep it very simple, & straightforward. If you can’t? “Things were very confused during that time? It’s all a bit of a blur. Which is part of the problem, right? I should be able to answer these questions, and I can’t. Not with any accuracy. Everything just gets jumbled up, and that scares me.” <<< Plain English, no diagnostic terms, asking for help.

No diagnostic terms when talking with most doctors is pretty key. They talk to themselves in terms like “I bonked my noggin.” Or “Just a few scrapes and bruises.” When someone comes in talking about lacerations and contusions to the blah blah blah and using correct jargon? It nearly always means a short list of not good possibilities (student showing off, Doctor Google, etc.). There are a FEW acceptable answers, which cause them to visibly relax and even laugh (or get interested, which is bad, when your trying to keep them on target. You don’t want interested doctors, lawyers, or cops. Just as a general rule.)... but unless you’re quoting a chart you’re handing them? Or repeating back what you’ve already been talking about? Stick to terms a 2yo would use, for the most respect. Really. If you HAVE to use diagnostic terms? Use this magic phrase “I’ve been told”. (Which includes, I’ve been diagnosed, but that leads them to ask by who/where/when. “I’ve been told” is magic. Because it means you listened and paid attention, even if they disagree with XYZA, they’re disagreeing with the person who told you, not you, and now they can tell you something different. And believe you’ll remember, and take it on board. It creates a dialogue instead of an argument, or dismissal. Really, magic phrase.)

 

[Sideways]

I am still struggling something fierce but no one will take me seriously because the PTSD.

Do you have notes anywhere about exactly what changed after the TBI for you? For example, became more aggressive, lost short term memory, etc? Those very specific things that flowed from the TBI? They vary a lot from person to person

Then with that list (absolutely nothing to do with your PTSD), make a note on how those specific symptoms are getting worse, or making normal function harder for you.

That's not about persuading a doctor that you have a TBI, that's about explaining to a doctor why your specific TBI needs treatment/rehab.

And again, no fancy expressions from google, just your own lived experience in your own words. (1) direct consequences of TBI that I noticed, or my partner noticed - at that point in time; and (2) how those symptoms are getting worse/making function impossible.

 

[Fadeaway]

@Friday last year I was in a severe car accident. The shoulder belt failed and my head went through the windshield. My husband and I were taken to different hospital rooms and I had no idea I had been unconscious until my husband told me later. I have absolutely no memory of the accident only what he's told me. Apparently I was fine and alert at the ER cuz nobody suspected head trauma

I have major gaps in memory for the next few months, and suffered from severe aphasia. Multiple trips to the ER did nothing and I was on a five-month waitlist to get in to see a primary care physician

Everybody kept saying anxiety anxiety anxiety. When my psychiatrist went on personal leave the doctor that took her place put me on three different types of benzodiazepines which basically made me non-functional. Try as I may I could not communicate, I I couldn't remember words and I couldn't organize my thoughts well enough to communicate anything. I stopped the benzodiazepines when I realized it was making it worse after about 3 months.

, over a year later and I still struggle with severe disorganized thoughts and getting myself organized to do things like keep up on housework. And while my verbal skills are coming back I know there's a huge difference in the way that I think. I don't know how to explain it it's just more difficult. It's not anxiety no matter what anybody says. I have found some amazing supplements that have done wonders my anxiety. I know my PTSD symptoms this is different but everybody brushes It off PTSD.

 

[TruthSeeker]

It's been a year and a month since my traumatic brain injury, I am still struggling something fierce but no one will take me seriously because the PTSD. There is no doubt in my mind that I'm a completely different person as a result. How do I get a doctor to take me serious and refer me to a neurologist?

Okay, I had a head injury also and I had the following symptoms:

I was given a day-long battery of psych testing, PT, and OT for organization. I got back 95% of functioning in 2 years with lots of hard work retraining my screwed up neurons. Neuroplasticity......important.....means you have to do what is hard...and keep doing it to change the way your brain is wired.....

What does my CPTSD look like 10 years later after a closed-mild TBI? Mild does not describe what I went through. On special neurological tests, damage could be seen....on a CAT scan, no damage was seen.

-attention deficit disorder like symptoms-still poor when stress is higher...but is manageable now-back then, it was horrible.
-No foot drag anymore-I can walk straight enough....and can skip and hop now
-Reading comprehension post TBI 3-4th grade then-back to normal UNLESS I have significant threat or trauma-induced stress which inhibits reading comprehension but I can always read all the words-I don't have visual tracking issues anymore either-that was TBI
-Balance problems with TBI-very bad....and when not dissociated....balance is fine and I feel safe.
-Hearing issues (I'm pretty deaf now)-TBI created that issue
-Tinitus (remains and is worse with PTSD symptoms) but TBI caused that,
-Auditory processing issues (inability to make sense of other's speech-their mouth moves...I don't comprehend at the speed they talked) is normal when stress is normal but will be impacted if I'm having flashbacks, or trauma related stress,
-Fatigue....loads of fatigue with TBI, now not an issue.
-Memory is still shit but it improved and intentional memory strategies are really helpful for short term memory (memory can be shit if triggered.... still does if stress/trauma issues are amped up),
-Thought disorganization (much better with lists, calendars, and apps-but falls to shit with PTSD issues and no calendar),
-Emotional regulation-anxiety issues/depression (back then, loads of crying and yelling)was TBI related-very mild now-.... doesn't happen unless I'm threatened or have a bad flashback...
Inability to do my job (so I collected medical unemployment compensation after TBI and went back to work teaching after 2 years later...successfully)-I retired and this is no longer an issue....but high stress made work "hard" and made it harder to accomplish daily tasks....
Visual issues involving lines (figure ground) I still have this-definitely a TBI residue,
Slow Speech- and words jumbled word retrieval speed and word order are fine now...if stress is monitored and low words will jumble but this is super infrequent now.... if I am under high stress or badly triggered. I totaled my car, and whaled my head on the window as the car flipped a few times.

I was fortunate to get a physician/psychiatrist who specialized in TBI and was an earlier published practitioner/researcher. He still practices on the east coast, USA. Dr Nathan David Zasler....He is world renowned.

It's been a year and a month since my traumatic brain injury, I am still struggling something fierce but no one will take me seriously because the PTSD. There is no doubt in my mind that I'm a completely different person as a result. How do I get a doctor to take me serious and refer me to a neurologist?

 

[TruthSeeker]

Don’t give them too much information. Keep it simple.

I had a head injury a year ago, was diagnosed with a TBI, but I don’t have a neurologist right now & need a referral. Do you know anyone amazing? (Or a practice with a good reputation, if you don’t have any stellar brain guys in your back pocket?)

They MAY ask you for details of what happened, or who diagnosed you... keep it very simple, & straightforward. If you can’t? “Things were very confused during that time? It’s all a bit of a blur. Which is part of the problem, right? I should be able to answer these questions, and I can’t. Not with any accuracy. Everything just gets jumbled up, and that scares me.” <<< Plain English, no diagnostic terms, asking for help.

No diagnostic terms when talking with most doctors is pretty key. They talk to themselves in terms like “I bonked my noggin.” Or “Just a few scrapes and bruises.” When someone comes in talking about lacerations and contusions to the blah blah blah and using correct jargon? It nearly always means a short list of not good possibilities (student showing off, Doctor Google, etc.). There are a FEW acceptable answers, which cause them to visibly relax and even laugh (or get interested, which is bad, when your trying to keep them on target. You don’t want interested doctors, lawyers, or cops. Just as a general rule.)... but unless you’re quoting a chart you’re handing them? Or repeating back what you’ve already been talking about? Stick to terms a 2yo would use, for the most respect. Really. If you HAVE to use diagnostic terms? Use this magic phrase “I’ve been told”. (Which includes, I’ve been diagnosed, but that leads them to ask by who/where/when. “I’ve been told” is magic. Because it means you listened and paid attention, even if they disagree with XYZA, they’re disagreeing with the person who told you, not you, and now they can tell you something different. And believe you’ll remember, and take it on board. It creates a dialogue instead of an argument, or dismissal. Really, magic phrase.)

So, when talking to a doctor, I should sound uneducated so they won't think I've been scoping out all the online articles and self-evaluating?

 

[Friday]

I should sound uneducated

Not uneducated.

On point.

Fancy words just distract from what you’re there for, is all. Intelligence/Education confers just fine without all the technical jargon.

 

[TruthSeeker]

Makes sense.

 

[TruthSeeker]

@Friday last year I was in a severe car accident. The shoulder belt failed and my head went through the windshield. My husband and I were taken to different hospital rooms and I had no idea I had been unconscious until my husband told me later. I have absolutely no memory of the accident only what he's told me. Apparently I was fine and alert at the ER cuz nobody suspected head trauma

I have major gaps in memory for the next few months, and suffered from severe aphasia. Multiple trips to the ER did nothing and I was on a five-month waitlist to get in to see a primary care physician

Everybody kept saying anxiety anxiety anxiety. When my psychiatrist went on personal leave the doctor that took her place put me on three different types of benzodiazepines which basically made me non-functional. Try as I may I could not communicate, I I couldn't remember words and I couldn't organize my thoughts well enough to communicate anything. I stopped the benzodiazepines when I realized it was making it worse after about 3 months.

, over a year later and I still struggle with severe disorganized thoughts and getting myself organized to do things like keep up on housework. And while my verbal skills are coming back I know there's a huge difference in the way that I think. I don't know how to explain it it's just more difficult. It's not anxiety no matter what anybody says. I have found some amazing supplements that have done wonders my anxiety. I know my PTSD symptoms this is different but everybody brushes It off PTSD.

After my TBI-I found the ability to communicate and access all of my vocabulary high...when I typed.....low verbally (when I talked) and much lower when under stress. There is a huge gap between both verbal and written. So, I text/email the important things and use organizational apps or Notes on my phone and make lots of lists. If I make paper lists...they are easily lost....so I keep my phone nearby at all times....with my list on it.
While it's been my experience that all functions don't return to normal, and I am left with residual issues, finding strategies to compensate and using minimum meds....has been helpful. Daily exercise, daily brain exercises relating to the competencies I wanted to rebuild, and wall calendars and a universal clock w big day/time and temperature have been helpful. Also, I have made efforts to organize my surroundings for ease of recall. I picked on room....an office, and put everything in its place and practiced there....putting everything away before walking out of the room. After several months, I did the same with another room. I have a harder time with the bedroom....the only room which is a struggle. For important info, I carry a small pouch with a strap where all the items (phone, credit cards, money, passport or passport ID, phone numbers (in case phone is lost), AAPR card, AAA card, etc. where they are visable. Before leaving the garage, I open it up......I check to see that I have everything....then I can leave. So to eliminate drama from forgetting shit......I had to create an organizational strategy to prevent drama over memory issues. Consider the same. It forces you to organize....I started small with the most important things....keys, money items, ID....and worked up to organizing my environment. While it forced me to be a little OCD-it prevents me losing important things-and makes finding things a whole lot faster and easier-which builds confidence. I found I could work on only one new targeted organizational strategy at a time.....get that down....and then work on getting another facet of my life organized. Occupational therapy can help this....too.