Traumatic Brain Injury and Post Concussion Syndrome For traumatic brain injury (TBI) and post concussion syndrome (PCS).


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Old 05-22-2019, 11:44 AM #1
MountainWalker MountainWalker is offline
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Join Date: May 2019
Posts: 4
3 yr Member
MountainWalker MountainWalker is offline
New Member
 
Join Date: May 2019
Posts: 4
3 yr Member
Default Hello

I want to introduce myself, and say that I am glad that I have found this community. It's been helpful to see that others have similar challenges.
Short bio:
Sustained a head injury while hiking in Sept 2017. Diagnosed with PCS later that week.6 weeks later collapsed at the metro; no cause determined, although it is suspected that it was vaso vagal syncope brought on by overstimulation. Participated in a study, and then a clinical trial, at NIH, where I was dx with mTBI. I am with an HMO and have received no treatment. None. I saw 2 neurologists there, but neither knew anything about TBI's. PCP acknowledged that there is no TBI specialist in the DC metro area, and they have refused to pay for me to see someone out of plan. NIH does research, not treatment;several folks there said I need treatment.

In the past 20 months I had some improvement, but then a setback in late January. Ongoing symptoms include: noise sensitivity, speech problems when fatigued. fatigue, executive functioning and cognitive problems (ex. initiation, planning, abstract thinking, sequential thinking, organizing thoughts, attention and focus). I have made notes of symptoms and progress throughout, which helps with organizing my thoughts. The NIH folks liked it as it provided clear, brief, statements of problems, and my coping strategies to deal with them and manage ADL's.

Am now no longer able to work as a professor.
Friends are supportive. Work colleagues were wonderful in helping me while I was there.
With help I was finally able to change insurance companies, effective June 1. I now need to find a PCP, and then help with the TBI. There are several concussion clinics in the area. The National Rehab Center (recommended by NIH) has not returned my calls, but I am now going to try INOVA. Am overwhelmed in thinking about how to proceed. I would love to have someone who acts as a case manager to oversee everything, tell me what tests are needed, and provide support.

Is anyone familiar with resources in the DC area? Since I am, essentially, starting from the beginning, any thoughts on how to get set up with medical providers?
Thanks!
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