PCS for One Year
 

Hello,

I am a new member here, though I have been reading (or listening to) the threads for some time. I'll try to keep my story brief.

One year ago, I was rear-ended and acquired a mild TBI (post-concussion syndrome). I was in a small truck with an inadequate head rest and my head went back and hit the rear window. My main symptoms early on were headache, dizzineness (imbalance), difficulty thinking, and extreme fatigue. After 2 months with almost no improvement, I began to improve fairly steadily, and by June and July of last year I felt like I was close to recovered. I still had frequent mild headaches and occasional brain fog, but otherwise had improved quite a bit.

In early August, I reinjured my brain by doing too much computer work. All of the previous symptoms came back, with the following additions: very severe light sensitivity (photophobia), sound sensitivity, and much more persistent dizziness than before. Since then, my thinking has cleared up a fair amount and my energy level is better, but all the other symptoms have either not improved at all or gotten worse. I have been doing as much as I can to take it easy and avoid stress, but have probably not been taking it easy enough until more recently.

I'm typing most of this with my eyes closed, and I do most of my computer "reading" via text-to voice software (my sound sensitivity is not nearly as bad as my light sensitivity). I wear very dark sunglasses, sometimes two layers, almost all of the time, I rarely watch TV anymore, and I am doing very little reading (compared to my norm). I am also doing a number of alternative health procedures, such as acupuncture, massage, cranio-sacral therapy, and vestibular rehab.

I have shown improvement over short periods but have always subsequently lost it. Even in the short-term, the improvement in photophobia has been minimal; in the five and a half months since my reinjury, my photophobia has gotten worse.

I would appreciate any feedback on my situation, especially regarding the photophobia symptoms. Thank you.

Pete

Welcome to NeuroTalk. Sorry to hear you are doing poorly. Your symptoms sound confusing.

Have you had an vision diagnostics done?

How about nutritional changes?

You alternative therapies throws a monkey wrench onto the pile in my view.

Has your neck and upper neck been adequately diagnosed and treated?

What main stream medicine diagnostics have you had done?

Other than the ER docs and my PCP, I've seen a neurologist and had two follow-ups with his assistants, as well a doctor (M.D) at the center for integrative medicine. The integrative med doc and one of the neuro assistants recommended the alternative therapies.

I went to both an optometrist and an opthamologist and neither of them found any problems with my eyes. The light sensitivity is a problem with my visual cortex--not my eyes.

I haven't had any x-rays done on my neck. The only sort of treatment I've had for my neck and shoulders is massage. Other than muscle tightness (which is an ongoing problem), I haven't had any neck pain.

Finally, other than a couple of acupuncture appointments, I didn't even start with any alternative therapies until over a month after my re-injury. I haven't noticed any changes with the other therapies, but the acupuncture seems to be helping; the only steady improvement I had was when I was doing it weekly, and as soon as I stopped, I backslid.

Neck problems do not necessarily include neck pain. The muscle tightness is the symptom of the underlying problem in may cases.

It sounds as if the neuro and his assistants ( Physician Assistants I hope) did minimal diagnostics. Not uncommon for a whiplash/concussion injury.

In your case, it sounds like a CT or MRI/MRA may be worthwhile. Since the visual cortex is near the point of impact, maybe there is damage they can image such a vascular issues. Some narrowing of blood vessels could be causing problems. This can be caused by inflammation in the area of impact.

Do your pupils react properly? This should have been one of the first tests done by the ER, PCP and neurologist.

I hope the driver that hit you has good insurance and you have a good mTBI attorney. Sounds like you are in for a longer than usual recovery, as if there is any usual time line. Just that the longer it takes to recover, the greater the chance of less recovery.

Has the neuro suggested a VEP? This is a Visual Evoked Potentials test done with EEG equipment. It measure how the brain is reacting to visual stimuli. A full qEEG test with VEP and AEP sounds worthwhile. For this, it is good to find a specialist in qEEG testing.

If you tell me what area you live in, I can do some research to find an experienced qEEG clinic.

My best to you.

Mark,

Thank you for this extremely helpful information. I've had my pupils tested multiple times and everything has checked out normal. I forgot to mention that I had a CT scan done a few days after the initial injury, and it showed no sign of long-term damage, but I have not had one done since the re-injury. I am going back to the neurologist (assistant) next week and will request this. I have never heard of the VEP test and will request this as well. What does AEP stand for?

I have a lawyer, though he is not specialized for mTBI. By the time I realized that there were lawyers who specialized in this, I had already hired him on contingency and he had already put time in toward my case. If I switch now, I'll have to pay him an hourly rate for all the time he has put toward my case so far. The driver is insured, fortunately.

I live in Madison, WI. Thanks again for your assistance.

Pete

UW Madison has an excellent fMRI (functional MRI) being used in brain research.

AEP stands for Auditory Evoked Potentials. When the brain is stimulated by an artificial source, they are trying to Evoke the brain to respond. This response is measured in electrical Potentials, these are the wave forms of an EEG. They can stimulate the brain with Visual stimuli (VEP) and Auditory stimuli (AEP).

I know of an excellent chiropractor near Madison. He used to practice here in Idaho. Check out William F Schneider, DC in either Oregon or Watertown, WI. If he used to practice in Boise, Idaho, he is the one I liked. Tell 'Dr Bill' Mark from Idaho say Hi.

Regarding a good mTBI lawyer, check out www.tbilaw.com. A expert TBI lawyer will be able to arrange a fee sharing arrangement. If your attorney is problematic with a fee share, he runs the risk of mal-practice for not providing expert legal representation.

How long has it been since you could work? You may be ready to apply for Social Security Disability Insurance benefits. You can apply as a year of disability is approaching. Sounds like you are going to need it. In fact, if your average wages for all of last year are less than $1000 per month, you already qualify from an income basis..

My best to you.

Once again, this is extremely helpful, Mark. Thank you. I'll look into all of your suggestions.

My work situation is a bit odd, since I'm still a grad student. I've been able to keep my funding assignments, but only because the past couple of them have involved very little work. I lose my funding (and my health insurance) as of June, and will be in no position to work full time. In other words, I've been able to stay employed so far, but only because my funding assignment for last fall and this spring is and editing assistantship in which I only do about 5-10 hours of work a week. It pays less than $1000/month, but also comes with a tuition waiver, and the course I taught the previous spring paid more than that. I was able to teach that course because I didn't have the light problems then (it was before my relapse) and had taught the same course twice before.

In same city as you
 

HI

I am also very close to Madison, WI. I was kicked in the back of the head by a horse almost two years ago. My head injury also involved a lot of visual issues, as well as many others. I saw Dr. Robert Weir at Davis Duehr Dean on Regent Street. He is a neuro-opthamalogist. He took everything I was going through very seriously and coordinated working with other specialists. He seperated out the various issues that I have as a result of the injury which included cranial nerve damage, visual cortex injury and injury to various other parts of my brain. He was very helpful telling me who to contact to help me with the various specialties. He was fantastic.

Regarding the visual sensitivity. I wear dark sunglasses a lot, even indoors. With the snow that we just got, there is a lot of sun reflection coming off the snow. It is almost blinding. I did not get glasses that automatically adjust to light (I forget the name of them). Instead I bought a couple pairs of sunglasses of different color lenses and intensity of darkness. Then I can choose which I need based on how sensitive my eyes are feeling. I will sometimes wear them when I am on the computer because it is the contrast that bothers my vision.

Also, I would highly recommend getting the ice covers that you can put on your shoes. It will get icy now, and the last thing we all need is a fall on ice. Mine have small metal grips on the bottom. I just have to take them off as soon as I come inside, because they are treacherous on tile floors and would tear up carpet.

Good luck with everything. I know how hard this all is.

Thank you for this, Winks. I have Physician's Plus insurance, and so far my care has been less than stellar. I don't think the doctor you mentioned is in my network. In any case, I'm only insured for another four months, so I'm going to try to get as much help in that period as I can. When I see the RN this week I'm going to request an MRI, and possibly referrals to a chiropractor and a neurologist who specializes in head injuries (I'm pretty sure my current neurologist does not).

Pete

Pete,

You will be more likely to find a doctor who has understanding of head injuries by seeing a physiatrist. A good physiatrist will be able to direct you to the appropriate neurologist if he thinks you need one.

Unless you can do some research into the local neurologists to find one with experience in your vision problems. (photophobia)

Maybe Clearview can make a recommendation See http://www.co.dodge.wi.us/clearview/CBIC.html


btw. I don't trust the answers from the a doctor's office staff. Staff tend to over-rate the doctor they work for. Outside recommendations are much better.

My best to you.

Thanks again, Mark. I may try for a physiatrist. I read a peer-reviewed study on EEG Biofeedback for treating PCS and it looks extremely promising. Has anyone here done this? It isn't available here in Madison (there's a center, but they don't have the equipment needed for treating brain injuries), but I'm moving to the Twin Cities in June and I'm sure I can find one there. It will have to be out-of-pocket, which I think I will be able to manage with help from family members.

Hi, I just wanted to back up what had been said re optometry.

I am from the UK and here we call it behavioural optometry and it really helped me with light sensitivity, improving the tracking of my eyes (they had stopped working together so well), focus, eye tiredness, computer work, reading etc.

And I didn't have this until several years after my original injury, so would strongly reccomend this.

I also wanted to give you some encouragement, whilst also emphasising that everyone's injury, as has been said on here many times, is unique and therefore unique in recovery.

I had fairly persistent symptoms for 18 months, but since that time, apart from occasional relapses, caused mainly by little jolts in the car, bangs to the head etc, I am generally symptom free.

I personally achieved this through massage, cranial osteopathy, acupuncture, behavioural optometry and an adjustment to the very top of my spine (totally forgotten what that was called............).

Anyway, the key is to find the unique combinations of techniques that maximise your recovery.

For the emotional side of your recovery, and as a wealth of ideas of practical things to try, I highly reccomend Gail Denton's book Brainlash, and I also had a small number of telephone coaching sessions with her which were extremely helpful.

Best of luck to you,

J

J: Thank you for this information. I just did a search and there is a center for this type of therapy right here in Madison. It is expensive, and I'll have to figure out whether I can get insurance coverage. I may be able to still pay for it even without insurance, but I'll only want to do that if it looks really promising. I'll get more info. from their website later.

My PT suggested that I get a referral to see a migraine specialist and get on some meds for treating persistent migraines. I tried Gabapentin awhile back and it didn't seem to help, but he said there were other meds I could try. I'm also going to get an MRI done.

That's excellent there is a centre near you, hope your insurance covers it.
The guy I saw treats a lot of youngsters for ADHD, headaches, dyslexia etc, and mentioned to me one time that people often have headaches because of their eyes not functioning properly (which is common after an accident/head injury) so it is possible that your headaches could be relieved by this kind of therapy.

It certainly worked for me, and means that you may be treating the root cause rather than just the symptoms, with medication.

But I totally get that you would also want to get rid of those headaches in the meantime! I remember them, they are nasty!

All the best to you,

J