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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.

On What You’ve Got to Do

packed at last and at the airport, four years post injury

One of several unanticipated changes that happened while I was recovering from traumatic brain injury was that I developed an utter and deep distaste for packing. More generally, when I was much more ill than I am now, one of the major skills I lost was the ability to organize.  This showed up in a myriad of activities, but above all, this cognitive deficit made packing for all excursions a much dreaded nightmare for me.  Even if all I needed was an overnight bag, it would take me hours, in some cases days, to get my things together.  It was hard to plan, hard to think, hard to judge, and mostly, hard to have enough stamina to get the job done.

Eventually, packing a suitcase became so difficult that I seriously needed assistance, as I did even with dressing, particularly when it meant going off to work.  The choosing and arranging was made even more difficult by two things in particular.  The first was that the picture making mechanism in my brain, visual memory and recall, seemed to be compromised.  I had a lot of trouble with this as I would place items in their familiar places, but somehow not be able to locate them when I went to retrieve them.  On more than one occasion, I lost things of value–my engagement ring, a new camera, another favorite ring that I still miss today. Once, I lost my keys, and it took me over a year to find them.  Another time, I somehow locked myself out of the house, and had to call a locksmith to get back in.  Before the injury, I was the one who remembered not only for myself, but for everyone in my family as well.  I wasn’t even the type who had to check and re-check whether I locked the door or turned off the stove; I remembered vividly doing nearly every action.

This problem was particularly confusing because no one alerted me that this change could happen. In fact, even after reporting several times to various health professionals that I lost various items, I never did receive a direct explanation as to why.  So there I would be time and again, laying out a scarf or a sweater to take on a trip, finding myself looking all over the house for where I had placed it.  Sometimes it was right in front of me, but my brain either didn’t remember or didn’t take the snapshot that helps us retrieve images.  I can’t give you a more scientific explanation other than this, for this is as I remember it finally explained to me by a neurologist.  

The second thing that made packing for a trip so difficult was the fact that I kept going up in size.  I would no sooner give in and purchase larger clothes that I would outgrow them. Once the affects of post-concussion syndrome set in, I just really didn’t get out of bed or off the couch much, whether I ate or didn’t eat.  When it came to having to pack, I just struggled, and sometimes the sheer frustration of it would overwhelm me to the point of crying. Usually in puddles of clothing that no longer fit me.

I had gone from actively planning and organizing daily, to not really being able to plan or organize at all.  Yet, it wasn’t the contrast between who I was and who I became that upset me the most.  It was the actual fatigue the activity caused that upset me the most.   I might start out focused, but the process would absolutely wear me down.  By the time I was ready to leave, I couldn’t stay awake in the car for twenty minutes without falling asleep.  My brain had such little stamina, and this always affected my body, and still does. And, of course, I almost always forgot something I meant to take.

It’s hard to admit that despite all the progress I feel I’ve made, I’ve still been in bed all this week.  I’ve just had head pain that keeps me down, and felt more tired than is even usual. Usually, I can’t sleep, but lately, it seems I can’t get up, and now, even my stomach hurts.  I once had an iron-clad stomach.  It’s this weird avalanche of feeling lousy almost all the time.  I don’t recover quickly, and I don’t have that power-through it ability I once took for granted.  I’m sure it is all the stress I’ve spoken of in earlier posts, but I used to be a stress machine…and nevertheless, it’s time for us to leave for a trip, and I haven’t even started packing.

Today we were blessed with a strong, steady rain.  The kind of rain that just begs you to curl up with a good book.  I have been reading nearly all day today, albeit mostly with my head on a pillow.  It finally occurs to me that I have developed an avoidance to packing, because packing and organizing are truly not nearly as difficult as they were for me, say, just six months ago.  I could do it, and I should do it, and I know that, but I don’t much care.  This is very unlike me–not to care–about anything.  I am generally a person who always cares way too much–about everything.  Now, I just want my book.  It feels so foreign and so selfish, but so much easier than the struggle.

One of the first things I learned about frontal lobe injuries is that a person tends to lose her motivation.   Still, I believed for a long time, in spite of the theory that frontal lobe damage causes poor motivation, that my motivation had not been affected at all.  Compromised, perhaps, but surely not gone for good.  After all, I have a list of accomplishments to prove I am still very motivated.  This blog, for one, is an attempt to motivate further healing.  I am writing again.  That takes effort and time.  It’s certainly not a lazy person’s pastime, although it does pair well with my fatigue and lethargy (which might be originating in part, doctors theorize, from the nasal obstruction and current lack of optimal breathing at night, which I am waiting eagerly to have resolved).  Learning how to navigate this blogging software is not exactly for those who lack motivation, although I’m just keeping it as basic as I possibly can for now.  The point, as I said, is to write.

Every day, I have to do this constant dance of pushing myself beyond what is comfortable. “Comfortable” for me could be to do nothing.  Like not packing.  Instead, I fill my time with activity that other, completely healthy, people avoid…reading, writing, worrying.  I’m not sure if I’m just wanting to assess myself as normal, or whether I’m actually being extraordinary.  All I know is that I somehow have to keep going.

I am worried about leaving for an extended trip because my parents are elderly, and my mother has terminal cancer.  She was not well yesterday, and the nurse said she was dehydrated.  Today she is better, but I can’t help worrying.  Two of my friends lost their mothers just this week, and now both of them are without either parent.  I still have all that ahead of me, and grief is not something that’s easy for anybody.  I’m worried I will be worried the whole time we are away traveling.  I keep trying to psych myself up to let go of worst-case scenarios, to stay in the moment.  This is partly what trauma does to a person.  It speeds everything up that once was seemingly well-regulated.

me, unpacking and organizing my son’s first dormitory room, two weeks before the accident

I am so different from who I was.  It would feel as if I have lost all my armor, except that I have gained some, too.  When going over cognitive testing, the neuropsychologist told me I could still write a book if I wanted to, but that it would take me longer to write than it once would have.  I knew he was correct, because even my writing has changed.  I recently looked at a journal entry written years before this accident, and the writing was so sophisticated and so beautiful, it made me weep. One doctor said it would be interesting to track the changes.  The thing that resonates with me is the approach another doctor, the neuropsychologist, took when reviewing my test results, and the irony those words hold even now:

“You have to pack your own suitcase,” he said.

I took this to mean that my recovery depends largely on me, my attitude, and what I do, or in this case, don’t do.  I am going to have to work for whatever I want now, for everything I want–nothing will come easily any long.  I’m going to have to be the one to decide–not doctors, not God, not my husband.  How and if I recover is largely up to what I push myself to do…and I’m going to have to push myself even when I don’t want to do anything.  I was always a hard worker, but now nothing is going to come easily, the way some things once did.  I’ve got to get this through my head, and keep starting over, no matter how long it takes.  I don’t like it.  I’m angry I got hurt so unfairly, so randomly, but there it is.

For certain, I am nobody’s superstar, if ever I was one.  Still, I haven’t given up.  I’m writing.  And I’m writing here where anyone can see.  The good, the bad, and the ugly.  Because even though I now hate to pack and sometimes even to travel, I still want to write…

I’m still that little girl who put pen to paper in her little room so long ago, long before she knew a thing about where she was going, what she would become, or what could happen to her along the way.

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© Debra A. Valentino, all rights reserved.

Up, and Back Down Again

5th Anniversary — Part 2

As the fifth anniversary of my acquired traumatic brain injury approaches, I am finally well enough to focus primarily on regaining muscle tone and losing the weight I gained while convalescing.  In making physical fitness my priority, I have retained a personal trainer, whom I have been working with for approximately two months, roughly two to three times per week.  On Monday, September 10, I had my first session of the week with her, but by Thursday I had my last.

My first notable stumble of this busy fifth anniversary week came on Tuesday, September 11, while I was attempting to ride my bike up a hill…a rather steep hill that was in the end just beyond my ability.  Physical stamina hasn’t happened yet, but I keep working as arduously and as often as I can.  I have only within the past two months made any kind of real progress.  In that time and in the years prior, I have had to start over toward my goal a hundred thousand times.  We really haven’t gotten much bicycling in this season — too many house appointments, too many doctors’ visits, the standard chronic fatigue.

Just the week before we had found a beautiful new place to ride, closer to our home than the paved bike route we usually drove to some fifty-plus miles away.  A lovely state park, with a little lake and lots of smooth blacktop, but far more rolling hills than we are accustomed to tackling.  Once I hit the proverbial physical wall on this unexpected second hill on our bike ride, the rest of the week began quickly to fall apart  — pretty much in keeping with the kind of turmoil that has plagued me throughout this recovery.

Ever since I was finally able to get out of bed since the accident, this is pretty much the way it goes:  I challenge myself cognitively to work my mind, or more often physically to combat the deplorable shape my body has acquired –> I rapidly fatigue –> I suffer debilitating pain and exhaustion –> I ultimately lose all focus, then resolve, and most particularly, emotional armor.  I end up tumbling like a rag-doll–down down down–until I am nothing. Unable to do anything. Well, basically not anything that requires standing or lifting my head, that is.  I can read, I can type, but I even eat with my head low, supine.

I spent all day Wednesday in bed, trying to recover.  It frustrated me, but this truly is progress.  I was wiped out from Monday’s workout and Tuesday’s bike ride.  Nothing unusual about that for me, even though both were what a healthy person would probably consider light exercise.

My recovery from fatigue currently rests at a mere 1-3 days.  There was a time in these mostly miserable past five years that recovery from fatigue was more like 7-10 days.  In fact, there was a long, long stretch of time where there were no good days at all.  That is, once I recovered to the point where I could even mark “productivity,” where I actually had what I characterized as a “good” day.  I remember reporting to the neurologist, “I had one half day this week.” I meant, I had one half day in seven where I could have a conversation (or what passed as one), watch a tv show (although I rarely cared to or stayed interested), or maybe even speak for a few whole hours (like when I returned to my university teaching job, long before I could realize or assert that I just was in no shape to work).

So, this Wednesday’s being a down day was not at all unusual.  I was tired, and I rested and read all day.  By Wednesday night, however, I found myself being hung up on by my college-age daughter.  In this phone call, she was trying to confirm upcoming holiday plans so she could purchase her plane ticket home.  She wanted to spend them at my parents’ as was once tradition, and I just wanted to stay home.  I didn’t care if she came to see me or stayed with her grandparents, I just knew that I wanted to stay home. I couldn’t in the moment understand why she couldn’t see that I am a person, too, with valid needs of my own.  She was frustrated, and obviously sick of the mom I have become (occasionally flat affect, and all), and not the mom who reared her, whom she needs and misses.  Plus, she is a planner.  Her schedule is so full she needs to be organized to function.  I recently retired, partly because I have lost the ability to follow a schedule, and I need to go by how I’m feeling.  This has gotten me in trouble with several people in the past few years, but it’s the way it is now, and I understand, even if they don’t.

The real problem in my family, however, is that I have changed.  I went from being a very active, very productive person, a person you could always count on, someone who always put everyone and everything else first–to a person who seems self-absorbed and sick all the time, checked out and foreign…someone no one really recognizes or likes, and even further still to a person who seems all of a sudden to now know above all what she herself needs—a person who takes care of herself (knowing she really cannot count on anyone for anything, anyway)–and also to a person who often doesn’t feel well enough to ask for what she needs politely, but instead insists:  “I am staying home.”

Again, words say it:  For the past five years, I have largely retreated.  I have been home a lot.

What the brain injury did, in effect, was to destroy nearly all of my social connections, and steal all the patience and polish and maturity I had earned over my adult years. These changes basically left me with the impulsivity, intolerance, and frustration level of an adolescent.  But somehow logic didn’t leave me, or so it seems at least to me…and so I end up arguing, sometimes seemingly making my point in a kind of calculus. What I mean to say is that I’m just not that easy to get along with.  Sometimes.  Certainly more often than I would like.  More often, surely, than others would like.  I hate this.  It costs me a lot of stress and aggravation.  I don’t like conflict at all.  It isn’t good for me on any level, particularly not physical.  Stress exacerbates pain.

Both pain and stress cost me a great deal of sleep.  Sleep that could be healing.

I didn’t sleep well at all after fighting with my daughter over where to celebrate Thanksgiving.  But I still, somehow, pulled myself out of bed and got to the gym in time for my 10 a.m. training session.  I didn’t want to go and I didn’t want to be there, and I was tired and sore, but I went, and I even arrived ten minutes early.

 

© Debra A. Valentino, all rights reserved.