pTBI
I sustained two penetrating TBIs to the back of the left side of my head as a child. Once at 4, once at 12. I was so bad at 4 but no one really noticed the change because I was in foster care. It’s kinda hard still to talk about what happened and I don’t really want to. That’s what kept me from getting treatment even as an adult.
I have tried a few times to get help now. My primary care doctor said there was nothing they could do because I was an adult. I finally went to a neuro optometrist to get an evaluation. They were able to see a lot of my issues, they listened and I am in vision therapy. I have prism glasses and I have seen huge improvements.
But they only treat part of the problem. I really need a full neurology work up. That’s a significant cost compared to a neuro optometrist. I have insurance but I’m haven’t been able to communicate what is happening in a way that translates to me getting a referral to a neurologist.
I was hospitalized recently because I was having a aphasia, unable to lift my left leg and the worst headache of my life. It was really scary. They took a ct scan and a ct with contrast. The checked for a stroke gave me migraine meds and then released me without a neuro consult.
I got a phone appointment with an available doctor to try once again to get a neurological consult. I have Kaiser so you can get a phone/video appointment pretty much instantly. I explained to the doctor the incident I was hospitalized for. I tried to explain some of the other symptoms I have had. Times where I feel drunk even when I’m not, my adhd medications wearing off sometimes after a couple of hours, mood shifts, times where I can’t speak, trouble with sequences and order.
One time i went to put my ex girlfriends back on a hook and I actually put it in a trash can. She got furious with me for putting her bag in the trash. But I really felt like I hung it up. I have these moments where I just can’t think.
Anyways I told the doctor all that and she said it was a tension headache. She gave me a referral but for headaches. Kaiser had me scheduled to see a neurologist this week but called to cancel and change it to a nurse practitioner because of what the referral was for. An appointment a month out as well. Maybe the nurse practitioner will listen because doctors don’t seem to. She has no experience with TBIs from what I was told.
If I could get a thorough work up I know the things I am going through would show up. Then I could finally get some help with this all. I just don’t know how to communicate with them. So I came here to ask if you have advice on what to say, what to bring up, what questions to prepare for. I feel like part of the problem is finding a doctor who will listen and part is that it’s not directly after the injury. Little me learn to adapt and also not to show weakness. But now I have to find a way to explain what is happening to get help.