Quote:
Originally Posted by MountainWalker
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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I also live in this area, and unfortunately I can't say I've found anything super helpful yet, I will keep you posted. At first, I saw a D.O named John Broussard who does cranial sacral, and he also clued me into which supplements to take, although you could easily find the latter on here. He works out of ROSM (regenerative orthopedics), where I had already been going for musculoskeletal issues. I am with Kaiser, so this was not covered, although more recently Kaiser was able to get me in with an optometrist who conducted convergence tests and has given me a prism lens prescription.
I have taken an interest lately in laser light therapy - the main issue people have ran into is that commercially available lasers do not operate at sufficient power to penetrate the human skull. However, I did find a chiropractic clinic nearby 'spine and laser center' in Virginia that has a K-laser, which i believe can achieve good power level, in addition to a PEMF device. I am going there in a couple days for consultation, and was told that a laser treatment is $60, which seems reasonable. Even if it ends up a flop, I'm willing to go a few hundred in considering the possible benefit