The Frustrating Game of Finding Useful Treatment for TBI

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Head Injury is Full of Surprises

Sustaining a head injury is full of surprises.  First, you are shocked by the blow itself, then shocked that you are still alive, then by how much pain and suffering the injury causes, and then by how little is known and how little help is available…AND THEN, by…

How long it takes to heal.

Add to the mix a lot of fear of the unknown, the weird reactions from co-workers, family and friends…and well, you can start to see how head injury ironically ends up keeping survivors on their toes.

There is a lot of suffering, a lot of waiting/of trying to endure, a lot of not knowing, a lot of holding on.

The Need for Improved Treatment

Physicians seem somewhat mystified by head trauma, which also is almost always brain trauma.  As a result, they have perspectives that tend to be sort of locked, limited, and dead ended.  A change in perception by the medical community, along with some innovation, could rapidly advance the treatment of head trauma.  Surely researchers are working on this, but for those who suffer, help hasn’t and can’t come soon enough.  The alarming thing to date is how little is known about the brain’s plasticity, or ability to rewire itself.  In fact, it has only recently been discovered that it can rewire itself, that new neuro-pathways form.  The result, in part, is that victims are given a generally small window of recovery time, when much more time is often needed.

CARTOON

One thing for certain, there are currently no clear approaches to treatment that are tried and true.  As a consequence, patients get ignored and their setbacks go unaddressed.  At the same time, there are all sorts of tests being readily ordered, and these tests (e.g. CT scans, MRIs) almost never render data that results in useful treatment, no matter how severe the results or how insignificant.  Patients also rarely are told the purpose of such examinations or even their advantages, and when they are told anything, explanations are brief and questions go unanswered.  The bigger problem (if it can be bigger) is that doctors seem to order these tests as solutions in themselves.

All this approach does is get one patient out of the physician’s office and allows the next to come in:  “Next.”

Through it all, the patient is left wondering what treatment is all about, and when they will experience some relief from their symptoms.  All the while and despite the added confusion this process delivers, the patient is so desperate to feel better, they typically proceed with hope.  This resolve does not even factor in the input of caregivers, which is generally but not always supportive.

Testing and Recovery

Unsuitable testing needs to change, and new diagnostic approaches must be designed.  People are suffering needlessly, and recovery in many cases is drawn out much longer than might be necessary. One of the biggest misnomer’s is that brain injury causes a lack of motivation, when in fact, brain injury survivors hold out hope and are highly motivated to return to pre-injury status.  Prolonged post-concussive syndrome is highly uncomfortable, yet survivors are acutely aware of their needs.  They are often able to articulate the disabilities, if not answer canned test questions. One would hope patient input could be key to medical advances…not just unveiled deficiencies that could improve with time and intervention.

concussion poster

Testing is common in brain injury remediation, and that is about the best you can say about some of it at this point–at least from a patient’s perspective.  Head injury patients need treatment, not ambiguous testing that does not guarantee treatment.  Testing might not even be the fault of doctors…but if it is, it should change.  The advantage of testing should be more clearly defined–who actually benefits from it?

It almost doesn’t matter whether your injury is severe or mild, you are in for a long road of physical agony and drain–on your body, as well as your heart, patience, and pocketbook.

Prescription and Other Therapies 

Sometimes, medications are prescribed to treat post-concussive symptoms such as dizziness, nausea, and fatigue as well as pain, which is typically chronic and often severe.  Medications can work wonders, but they generally come with their own sets of problems, and better ones might be developed.  Additionally, length of prescription therapy is key. Some medicines can pass their point of therapeutic advantage and become toxic. All medications for brain injury need to be carefully prescribed and monitored, yet monitoring itself takes time and money.  Any chemical recommendation must also come from an experienced or knowledgeable physician who is willing to watch closely its affects.  This doesn’t seem to be the experience of most survivors at this time, and certainly wasn’t the case in the past for those who were left interminably in rehabilitation facilities.

Prescription therapy also means the patient must be compliant by taking the medication, and on schedule. Medications can also feel threatening to a brain-injured individual, who has already experienced indescribable near-death terror and suffering. Doing anything on a schedule is its own obstacle when a person is feeling so uncomfortable and so fatigued. There is a lot of being bed ridden, and finding it difficult to get up at all, no matter how much the patient wants to get moving.

Even if the patient is lucky enough to find a high caliber physician who knows the right medicines to prescribe, getting to a doctor’s appointment can be difficult in itself.  Many brain-injured individuals lose the ability to drive a vehicle, at least temporarily.  Plus, when patients don’t feel well to begin with, car rides and long waiting room visits are a trial all their own.  Doctors are also busy, and that makes getting in to see them a dance all its own, not to mention the restrictions placed on both the provider and the patient by the insurance companies.

It seems that most people do not realize that a lot of concussion recovery is holding on for dear life, like you’re on the fastest roller coaster–doing dips and drops on an empty stomach, with strobe lights all around and loud music blaring.  There’s also the belief that that is the patient’s fate, and therefore there isn’t anything to be done to help them.  Breaking through this Neanderthal misconception could be the dawn of many improved therapies.

Supplemental therapies such as Reiki, cranio-sacral therapy, vitamin supplementation, cognitive/ physical/occupational/speech/vision therapy, meditation, and even massage are all useful considerations. The thing about supplemental therapies is that most are not covered by insurance, no matter how useful or beneficial.  Timing is also key to supplemental therapies, because what works later in recovery is not necessarily what helps early on, and vice versa.  Receiving therapies out of synch sometimes leads to increased discomfort instead of improvement.  On the contrary, adding techniques such as these will often render impressive improvements, particularly in pain management.

A Final Note About Physicians 

Despite the frustrating state of medical science at this time, the brain injured patient does not want to go without a physician.  Finding a caring physician is equally important to finding a competent physician who is knowledgeable, but both are unfortunately feats in themselves.  Whether a physician cares about you or his own practice or is dedicated to his science alone is of little consequence–you need a physician who actually does care.  How you accomplish this has a little to do with luck, but if you find yourself with an uncaring physician, you should definitely seek referrals from others.  I cannot stress the value of having a physician who cares about your recovery.

You can help your own situation by getting the doctor to like you.  This isn’t an easy task for any brain-injured individual:  You know the discrimination you face daily, the drudgery of being discounted and relegated to inconsequential…the drain head injury presents to all connected.  Please note that you do not win the physician’s favor by buying gifts or flattering them or any such tactic; you pretty much win it just by being yourself…by letting the physician see that you are a real person.  Be true to yourself as best you can so that your doctor can at least see glimmers of your pre-injured self.  You also win your physician’s favor by being co-operative.  This means you have to check your anger and frustration at the door, not get into any spats with the receptionist or staff…and if you can do that with a head injury, you are probably pretty likable by nature and/or well on your way to recovery.

Important Insurance Information

When securing a physician, do not forget to first check with your insurance to make sure they are covered and/or in network.  This should be done upfront, but some brain-injured people can find ways even to mess this up.  For example, I made the mistake of changing insurance companies mid-treatment (because, as you know, complex analysis sometimes eludes us, if only temporarily).  I switched carriers while going to the same doctors, and somehow thought this would save me money because the monthly premiums and co-pays were slightly lower (though they eventually increased anyway).  The end result is that I am still paying my way out of that mistake–for treatment that was once nearly covered in full.  It’s also unnerving, because I certainly never meant to compromise the doctors’ payment or my own ability to pay–I thought I was doing something smart.

Remember also, you must have an advocate.  This is true about anyone who is ill, and really about anyone in case they get ill.  More on that another day…

Here is a video that speaks to the quandary of finding treatment that helps.

© Debra Valentino, all rights reserved.

One thought on “The Frustrating Game of Finding Useful Treatment for TBI

  1. The facts Debra gave include many more complications she had to cope with than I would ever have imagined. I am glad she told of the realities of how they influence so many parts of one’s life!

    The video of the gentleman speaking about his injury and rehabilitation show it was all a real struggle for him. However, his experience was different from Debra’s. However, Debra could relate with him, and he also could relate with Debra!

    This was an extremely valuable blog post; it gave many more details, so many which were new to me! It was very interesting. At the same time, my heart goes to anyone who has to suffer in this way! Thanks for enlightening us to the many ramifications of Traumatic Brain Injuries.

    Faithful Reader

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