Hey Guys,

On this website is a very good article of a recovery story of a girl who had had 4 major brain injuries. This is inspiration for us all! Feel free to read the entire thing, but her story is about 1/2 way down titled "Sharon's Story."

http://stonemountaincenter.com/site/...ment-modality/

Mark - thanks for the insightful analysis on these issues. It would seem from reading your post that my sumptoms are mainly physiological. I suffer from this weird vision symptom where everything seems like its momving in slow motion, combined with a lost sense of time (although no balance problems). Have you ever had any vision therapies? Which would you recommend?

Baseball,

I don't think Mark has ever tried vision therapy, so I'm not sure he would be a good person to ask. I have tried it and it works very well. If you are interested, check out these websites:

http://www.novavision.com/Home.html

http://nora.cc/content/view/93/86/

I would recommend contacting someone from the NORA (not NOVA) website. I worked with someone from here who was associated with them and she was very good and very comprehensive.

You may also want to look into vestibular rehabilitation as the visual system and the vestibular system work in conjunction with each other.

Most insurance companies will pay for visual rehabilitation but not without a hassle. Get the codes from the vision therapist and call your insurance company. If they say that they do pay for it, get it in writing. For some reason, insurance companies like to fight not paying for this even though the FDA has cleared it for reimbursement.

Vestibular rehab will definitely be covered though because physical therapists who specialize in this field administer the therapy.

Typically what happens is that once your physiologic symptoms begin to disappear, the psychological ones follow suite. This makes sense because for most of us, the physiological symptoms are what causes the psychological ones, i.e. depression.
And these therapies are not about finding new ways of doing something. They are about reprogramming the brain to operate at an optimal state. Some people even find that after doing the therapy, their vision/balance improves beyond where they were before the head injury

Thanks mhr4. You mentioned that NORA is supperior to NOVA. Does NORA use the same apparatus (Vision Restoration Technique) as NOVA? There is a NOVA provider 10 minutes from me, however the nearest NORA is 45 minutes away. I was actually tested on the NOVA device a few years ago and it was normal, however I am worse now than I was then. Is it better to see an opthmologist rather than an optomitrist in this case?

To be honest, I have never used NOVA, so I don't know a lot about it. NORA is just an association that vision therapists who specialize in brain injury rehab belong to. NOVA seems to be a specific type of rehab that only certain therapists do. So, if you go to someone who does NOVA, you are only going to do the NOVA protocol. However, if you go to someone who is associated with NORA, you are going to do a variety of protocols, which could include NOVA. It does seem that NOVA has some research to verify its effectiveness though, so that may be something to consider.

As far as choosing an ophthalmologist over an optometrist goes, I'm not sure on that one. I guess it would be similar to choosing between a psychologist and a psychiatrist. Ophthalmologists are MD's who receive advanced training on the visual system and Optometrists are people who receive training only on the visual system. I would probably be inclined to go with an ophthalmologist over an optometrist if I had the choice. However, the lady who did my rehab was an optometrist and she was great. She has even published research on vision rehab and brain injuries. So, again, not sure on that one.

I think most of these guys offer free initial consultations. You could maybe visit both and decide which one you want to do based on your meetings.

I would be interested to know more about your visual symptoms. My daughter had a weird eye jumping thing happen so neuro sent us to a neuro opthamologist. He was basically a jerk and thought her symptoms were psychological. Anyway...he found some damage to optic nerves, loss to peripheral vision, and sent us for visual evoked potential test. We were told these issues would heal with time. Her vision is still 20/20. She can read again and the eye jumping thing has gone away. She complains of occassional headaches and lightheadedness at times.

What symptoms would let me know that she needed some visual therapy, in addition to time, to aid in her healing?

I found mhr4 previous postings and neuro skills links. Thanks for that!

My daughter does not seem to have any coordination, balance or reading problems. She hasn't said anything about depth perception or thinking things are moving that aren't. Her cognitive skills are improving rapidly right now. I might follow back up with her usual optomotrist and have him review the jerky opthamologist's findings and re-test at least her peripheral vision.

Headache, lightheadedness, and nausea (all occasional - like two or three times a week) are the biggest remaining issues. Definite improvements, but i still don't want to overlook anything I could do to aid in her recovery and safeguard her from future.

baseball,

I can speak for myself regarding vision therapy. ** No, I have not had any vision therapy. Not because I do not believe in it. I believe it has valid applications. I do not suffer from any vision problems that are treatable with vision therapy. My visual memory problem is singular. By that I mean it is not caused by or made worse by any of the other treatable vision dysfunctions.

My photo-sensitivity has existed for over 40 years. Since I need corrective lenses, I use photo-chromatic lenses to lessen the brightness around me. This is the standard treatment.

Even though I have a reasonably strong astigmatic problem (3.5 diopters), otherwise, I have excellent range of view and ability to discern objects in a cluttered field. These abilities have remained stable or improved over 45 years. I have slight convergence difficulties that are attributed to my astigmatism. My brain is so precise in its interpretation of visual information that I need a very accurate astigmatic correction. My astigmatic correction axis must be well within 2 degrees. This creates a serious problem between the optometrist and the dispensing optician.

My visual difficulties are due to my brain not being able to filter out excessive and extraneous visual stimuli. I have the same problem with auditory processing, only worse. This problem has only existed since my 2001 injury. Prior concussions did not cause any lasting deficiencies in this area.

There is a big difference between an optometrist and an ophthalmologist. There are optometrists who are trained in vision therapy but they are the exception rather than the rule. They can be life savers if the vision problem is treatable.

My suggestion was finding a neuro-ophthalmologist. They have additional training beyond the generic ophthalmologist. Although I have an understanding of therapeutic optometrists, I neglected/forgot to mention this therapy.

I doubt you will find an ophthalmologist who will offer a free consultation. Some of the more holistic optometrists may offer a free introductory consult but beware the practitioner who offers a free consult that is really a "show and sell." They will use the time to sell their therapy/practice rather that look into your specific needs. I am very hesitant of professionals who feel the need to give a sales presentation. There are too many snake oil salespeople out there.

I have had too many free consults that were just an effort to bring in a new patient, regardless of diagnosis.

There are a variety of vision therapies. The most common is used to correct or improve vision problems such as lazy eye, crossed eyes, double vision, convergence insufficiency and some reading and learning disabilities. Double vision and convergence insufficiency are common symptoms of PCS. There are some reading difficulties that are also common to PCS.

EMDR is a common alternative vision therapy. Eye Movement Desensitization and Reprocessing (sometimes called Reprogramming) is intended to resolve past stressful experiences. It is rather controversial but has many strong proponents. Since it does not require a specific piece of equipment, EMDR does not fall under the FDA Regulatory system.

ROSHI and pROSHI are not within the normal range of vision therapy. They are passive therapies (the patient does nothing) that use the visual system to try to use light pulses to stimulate the brain into a different and hopefully corrected wave form. ROSHI and pROSHI are FDA labeled as relaxation therapy devices.

Their promotion for other symptoms is definitely off-label. As I stated earlier, they are based on a philosophical/religious principle that some may find objectionable. Here is a listing of the publications and presentations **. http://www.nnrionline.com/index_files/Page1276.htm

**

There is a big difference between a psychologist and a psychiatrist. The former is a Psy.D. or Ph.D. The Psy.D. is trained in the psychological diagnostics and therapies. The Ph.D. requires understanding the research and statistical methods of the Psychological discipline. A neuro-psych has additional training and residency requirements in the neuro testing and assessment fields.

A psychiatrist is an M.D. sometimes with a Ph.D. also. Some psychiatrists add a neurology study/residency to their training. The depth of medical/physiological knowledge of a psychiatrist can be very helpful with PCS. Psychiatrists often have more psychological knowledge that psychologists have psychiatric knowledge.

The psychological versus physiological needs of a brain injury are best treated in the proper order. The psychological needs can complicate the brain's attempt at physiological healing or improvement. Psychological stresses create a cascade of chemical processes (stress hormones) that can preclude physiological improvement.

The psychological aspects can be treated more specifically. The physiological aspects are not only difficult to diagnose specifically, but also difficult to treat specifically. Other than seizures and brain swelling and in the best cases head aches, the microscopic brain cell injuries are slow to respond to treatment.

One of the primary psychological components that are worth treating is the anxiety/OCD/depression . This is often a result of the "Am I going crazy?" or "Why is this happening to me?" repetitive thought process. PCS creates a physiological environment that makes anxiety a common problem. This is why many doctors use anti-anxiety/anti-depressant medication for PCS patients. The reduction in anxiety/depressive symptoms is read as a improvement of the PCS symptoms. At least, it causes the patient to not pester the doctor with such an intense hypochondriac style.

CBT (cognitive behavioral therapy) is also helpful with these anxiety/OCD/depression components. This starts with understanding the underlying physiological symptoms. This "redirecting thought" is very helpful as we try to deal with our symptoms. For me, it often means walking away when my mind wants to get angry. Adult 'time outs' can be very beneficial.

baseball, You are engaging in a good process. Understanding the different diagnostics and therapies is necessary prior to spending good money on them. It is also worthwhile to understand your own specific symptoms. Knowledge is power, especially when it is your own health, success and money at stake.

Keep asking questions and researching. Try to make it a point to differentiate between statistically validated evidence versus anecdotal (individual case reports) evidence. The placebo effect can often cause up to a 60% positive response. Statistically valid studies will address and/or adjust for the placebo effects.

Thanks for all the replies and suggestions everyone. My visual problems are different than what Mark and PCSLearner have been experiencing. I have been trying to explain, to myself and to doctors, what is happening visually for years but I can't find words to describe it. I also find describing how I feel near impossible. It is so brutally frustrating. There are two issues going on with me that I will TRY to explain.

First, there is the foggy disoriented feeling that I constantly have. I lack the ability to "feel" time and space, that is to "feel" where I am. This is the main complaint I have. For example, I cannot distinguish between 10 seconds ago and 10 hours ago. It is they either all feel the same or there is some memory issue, but I remember everything that happens throughout the day. The best way I can describe it is it feels like I am drunk and high all day (even that would feel better) and that my head is filled with water. There is no physical pain associated with. I get no headaches or migranes, aches, light sensitivity. Nothing. I also have no fatigue during the day, I never feel like I want to take a nap. I sleep a full 8-9 hours and wake up rested (although since my symptoms arose I have been waking up briefly once a night which I never did). I have been trying to explain this feeling for years but it is virtually impossible. I also get very confused when I speak.

Second is the vision issues. It feels like I am seeing things in frames. That is, I focus on one object, then when I move my eye it immediately goes to the other object with no smooth transition. It's almost like there is a moment of blacking out between each movement. I don't even know if this is the correct way to explain it. It might be associated with the disoriented feeling, not independednt, I don't know. Objects are clear, so nothing is wrong in that department. This combined with my spacial and time fog is how I am feeling.

I am not depressed or have anxiety, I take xanax sometimes but that doesn't make the symptoms go away. Which is why I was asking about neurofeedback or vision therapy, it is not depresssion causing MCI or depression with MCI (issues 2 and 4 of Marks previous comments). This feeling just one day appeared, I felt the instant it took over my body (I noticed it a little a few days after my incident, then it got really bad right after my flight the next day).

What I have learned in the past years of researching and experiencing these brain issues is that you can research and do therapy all you want, but it is impossible to actually know what the problem is. I have never read anything about a doctor accurately pinpointing the problem on a patient and treating that issue. Everything is a hypothesis about what could potentially be wrong and then just letting the brain heal itself, and treating it with everyday vitamins that are good for the brain. Its like trying to derive Einsteins theory of relatively without taking Precalculus. The brain is so inherently complex and humans probably know maybe .01% about how it actually works. It would be nice to have some diagnostic tool, like they have for automobiles, that you can just plug into your brain and it tells you exactly where the fault is.

FYI I am taking B6, B12, C, Fish oil, multivitamins, E, A, Ginko, and Rhodiola Rosea

Also, Mark I agree 100% with you on the optomitrist/opthamologist issue. I would have no problem seeing an optimitrist over opthmologist for therapy if I know what exactly is wrong, like you. However I have no idea what is going on.

baseball,
Do you know what nystagmus is? Your symptoms sound similar to pathologic nystagmus. This is a symptom of a vestibular injury.

I would keep pushing for a doctor to look into this. Do you live anywhere near a medical school? Sometimes, difficult to diagnose problems can be submitted to a large group of med students who have time and access to vast amounts of medical research.

The disorientation to time is also a specific symptom that should point to a specific part of the brain. I have a difficulty to track time as it passes. Or to put events in chronological order. I may remember that something happened but have no idea when. If it was today, yesterday, or last week. The past ten years are all mixed up.

What was the precipitating event?

What is your neurological history? concussions? history of getting passed out drunk? toxic exposures? diving accidents? heavy metal exposure? high fever? sinus infections? tooth abscesses/root canals? STD's? syphilis can cause neuro problems but go undetected for years.

What diagnostics have you had done? Any high end imaging? Or qEEG?

Have you had your B-12 and folate levels checked? Some people do not process B-12 orally in sufficient quantities. I received B-12 shots at one period in my life. I would add folic acid, niacin and thiamine to your regimen.