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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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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Old 05-22-2019, 11:15 PM #2
Mark in Idaho Mark in Idaho is online now
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Mark in Idaho Mark in Idaho is online now
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Please tell us about the mechanism of your injury?

What diagnostics have you had?

What treatments have you tried? Self-treatment or by others?

There is no such thing as a generic concussion/mTBI. Every one is different.

What have you done to reduce stimulation?
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Old 05-23-2019, 07:34 AM #3
MountainWalker MountainWalker is offline
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Default Hello

Hi Mark,
Injury: I fell while hiking up a mountain, with my forehead connecting forcibly with a rock. Two gashes on my forehead, and injuries to knee, arm, and hand. I continued to one summit, but cut short the planned hike due to injured knee. It wasn't until I had a great deal of difficulty waking up the next day, and began experiencing other symptoms, that I considered a head injury.

Diagnostics: CT scan 4 days post injury. Following the syncopal episode I had an MRI/MRA, carotid ultrasound, EEG, ECG. At NIH, for pre and post assessment in a clinical trial only, I've had MRI, fMRI, ECG, Echocardiogram (no heart problems), neuropsych tests, fitness tests. They won't give me the test results as they are for research only, and not clinical applications. Had a brief neuropsych test done with a speech therapist. All scans show nothing. Inadvertently learned that neuropsych tests showed impairment in language, attention/focus,sequencing, and something else that I can't remember.

Treatments: No treatments, but have an extensive array of cognitive and executive functioning coping strategies that have been largely my creation, with some assistance from friends and colleagues. That has included getting adaptive technology, from my university, which allowed me to grade papers and prep classes. That was a lifesaver. I am going to try and implement Neurological Music Therapy with the help of two musician friends (one is also a clinical psychologist), and my own music therapy training. I can't design an intervention myself, but may be able to do so with their help.
Along those lines, I'd like to play (piano, hand drums) daily as that may help with some of the challenges. I have trouble with initiation, so am still working this out. I've done quite a lot of research on my own.What I've learned about mTBI's has helped me, with the aid of friends and colleagues, in creating adaptations,

Reducing stimulation: Noise cancelling headphones, and adaptations to when and how I shop, etc. I'm okay with light, but not visual busyness. I've reduced visual stimulation in my office; i.e. nothing on my desk except the task at hand, nothing on the walls, etc. I've been able to work from home a lot, so am able to do so in silence. Since I am currently working only minimally, the stimulation has been reduced even more.
I have to create a task-oriented agenda (have trouble with task completion and task separation), and I make sure to alternate between cognitive tasks and motor ones, so as to not be overwhelmed. I don't do non-essential reading.

Clarification on my initial post: my current PCP acknowledged that there is no TBI specialist in the area - with this HMO. There are TBI providers in the area. She advised me to go out of plan, but said that I'd have to pay for this on my own. I'll have new insurance June 1.
Thanks
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Old 05-24-2019, 12:38 AM #4
Mark in Idaho Mark in Idaho is online now
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With all of the self initiated things you are doing, what do you hope or expect a specialist to offer?

mTBI and PCS are not a "Doctor fix me." condition. Other than vision and vestibular therapy, you are doing most of what would be expected. I have lived in a similar condition for 18 years.

There was an NT member years ago in the DC area. He found some help but not much.

I'm assuming you were mountain hiking east of the Mississippi. No high altitudes to challenge an injury.
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Old 05-27-2019, 04:04 PM #5
Hamncheese Hamncheese is offline
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Hi MW,

In the greater DC area, Dr. Kevin Crutchfield in Baltimore came highly recommended to me. He completely dismissed my symptoms as psychosomatic, but perhaps you will have better luck.
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Old 05-28-2019, 03:29 PM #6
guitardude guitardude is offline
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Quote:
Originally Posted by MountainWalker View Post
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!
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
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Old 05-29-2019, 08:40 PM #7
MountainWalker MountainWalker is offline
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Default

Thanks for the information. I'll look into the supplements.
Why are you doing the laser light therapy? Are you sensitive to light? I don't have that issue, but am bothered with visual 'noise', for which convergence testing has been recommended. I am interested in hearing about what you learn, and how things go.
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Old 06-02-2019, 02:54 PM #8
guitardude guitardude is offline
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Quote:
Originally Posted by MountainWalker View Post
Thanks for the information. I'll look into the supplements.
Why are you doing the laser light therapy? Are you sensitive to light? I don't have that issue, but am bothered with visual 'noise', for which convergence testing has been recommended. I am interested in hearing about what you learn, and how things go.

I have visual snow as well - however, laser light therapy is not specifically targeted to light-related symptoms but is instead an effort to use 'photobiomodulation' to impart energy/ATP to the brain cells. like i said, if its a total bust so be it but the upfront cost is not too much so I'm giving it a go.

https://www.ncbi.nlm.nih.gov/pmc/art...ZS4oXMFHXuIdiY
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