[flopper]

DEALING WITH DOCTORS
It's important to understand that your relationship with your doctor is absolutely going to effect the quality of care that you receive. Doctors tend to put patients into two categories: the good ones and the bad ones. Patients that are likable fall into the "good" category. They get more effort from hospital staff and they often make more progress. But patients are never told what it takes to be a good patient. Although getting along with your doctor is just "common sense," few people know how to do it.

Diagnosing a head injury is not a simple thing. If your doctor does not believe that you have a head injury, you will not get the treatment you need. Why doesn't the doctor believe you? From the doctor’s perspective, standard medical tests to diagnose head injury are often negative. In nearly 85 percent of the patients that I see, the CT Scan or MRI (these are very expensive machines that take a picture of the brain) results are "negative"—in other words, normal. People can have significant head injuries and still not have a positive finding on these tests (medicine is strange, a positive finding means they found something--it's not "positive" in the sense of being good for the patient). In fact, all the medical tests can be negative on a person who still has a significant head injury. For example, the blood work may be fine, and the patient may be able to stand, walk, and talk without difficulty. But the head-injured person may have significant problems with memory, fatigue, and headaches. You have to remember that doctors are trained to rely on medical tests to give them direction on what to do next. If all of the medical tests are negative, what is the next step?

Many doctors rely on neuropsychological testing. Neuropsychological testing is probably one of the best vehicles for diagnosing head injury. It's between 90 and 95 percent correct in accurately diagnosing someone who has a head injury. Right now, it is the best technique available. But not everyone has access to a neuropsychologist. Often there's not one available or people don't have insurance coverage to pay for this very expensive service. Without good documentation, it is easy to see why your doctor doesn't believe you.

How do I get my doctor to believe me? When you meet with your doctor, bring a complete list of your problems. Now this sounds pretty obvious. But for the head-injured person, it is actually difficult. Head-injured people typically have memory disorders. In other words, they forget. So one day they go to the doctor and say, "my back hurts and my memory is not good." They go in the next week and say, "By the way, I'm not sleeping very well." They go in another week and say "Oh, I have headaches." A doctor might begin to think "This person is just a complainer and comes up with a new problem every week". In reality, the head-injured person just forgets to tell their doctor the full story. They often kick themselves when they get home, because a family member asks, "Well, did you ask about your headaches?" The patient says, "I forgot", and doesn't get any help until the next appointment (that can be one to two months for some people).

I highly recommend that you write your complaints down. Get them all on paper. Spend some time thinking about it. Maybe put that list up on your refrigerator, and as you are reminded of a problem, write it on that piece of paper. I've included a sheet at the end of this book; it's called a Memory Sheet for Doctors’ Appointments, where you can write down your appointment time and a list of your problems. When you go to your doctor, take the list of all your complaints. By the way, you're doctor writes down all your complaints and keeps a written record. Insurance companies commonly review these notes when they are thinking about paying for services.

Not all complaints can be solved in one appointment. Back pain, headaches, and memory problems are not going to be cured by a simple pill. Identifying all your problems is a good start on a long journey with your doctor. One of the hallmarks of a good patient is communication with the doctor and talking openly and honestly about problems. The good patient also needs to realize that the doctor has no miracle cure.

It is most important that you take medications the way your doctor told you to. For example, a doctor gives a medication to help with headaches and the patient thinks, "I took one of those pills and my stomach got really upset; I’ll stop taking them," then doesn't tell the doctor about stopping the medication until the next appointment. If you have a side-effect, call the doctor's office and tell them. It could be something as simple as the need to take your medication with food. If it is the wrong medication, the doctor might be able to call in another prescription to your drug store. If you don't talk with your doctor and you start changing treatment without the doctor’s input, you're going to quickly fall into the "bad patient" category. Why is this a problem? The doctor may not use more powerful medications that might have helped you. Why? Some of these powerful medications can be dangerous if not taken properly. If the doctor can't trust you, you won't get the medication. In the end, you will suffer. Moral of the story--take medications exactly as your doctor tells you to.

Sometimes people buy a medication holder (divides pills by times of the day) to help them take their medication. You can buy them for probably under ten dollars and put all your daily medications in them (you can also buy weekly sizes). Take your medications at exactly at the same time every day. Why is this smart? It makes the medications work better because your system adjusts to them better. Also, it ensures that you're not taking too much or too little of the medication. If you forgot whether you took your medication, you can open the medication holder to see if the medication is still there. Don't self-adjust the amount of medication. If your doctor gives you a prescription that is supposed to last a month, and in three weeks you call and say you've run out, the doctor will quickly figure out that you didn't take the medication the way you were supposed to. Using a medication holder and properly taking your medications sends a message to your doctor; it shows that you're serious about your medical care.

It is important to realize that physicians need to see a large number of patients to cover costs. Their expenses are extremely high. In order to cover these expenses, they have to see a lot of patients quickly. You can help your doctor by listing your complaints in a brief manner. For the return office visit (you come back to tell them how you are doing), try to give a 3 to 5 minute report. Even if your doctor is well aware of your complaints, develop a common language in reviewing your problems. For example, in dealing with headaches, it's good to develop a numbering system. Use a pain journal (get a monthly calendar) and rate your pain each day from "1," meaning no headache, to "10," meaning the worse headache you've had in your life. Now when you go to your doctor, you can say, "I was having "7" headaches before the Darvocet, but I'm now having "5" headaches." Show the doctor the journal each time you visit. This is quick, short, and conveys a lot of information. Even if there is no progress, still use this system--"I started at "7"but they remained at "7" even after the medication".

One more important thing about doctors--they like to hear progress. They like to see people get better. Although it's important to talk about your problems, it's also important to acknowledge your progress. For example, someone may continue to have neck pain, but the doctor's efforts helped make the pain half of what it was three months ago. Reporting progress is also the sign of a "good patient." I love to hear when my patients do better. It makes my day. I'm sure other doctors feel the same way.



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Related Links || Download the Book


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CONTENTS
Common Indicators of a Head Injury || How the Brain is Hurt
Understanding How the Brain Works

COPING WITH COMMON PROBLEMS
Memory || Headaches || Problems Getting Organized || Getting Overloaded
Sleep Disorders || Fatigue || Anger and Depression || Word-finding

Dealing with Doctors || Family Members: What You Can Do In the Hospital Setting

Seizures || Emotional Stages of Recovery || Returning to School
When Will I Get Better? || Who Are All These Professionals?


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TRAUMATIC BRAIN INJURY SURVIVAL GUIDE
By Dr. Glen Johnson, Clinical Neuropsychologist
Clinical Director of the Neuro-Recovery Head Injury Program

5123 North Royal Drive || Traverse City, MI 49684
Phone 231-935-0388 || Email debglen@yahoo.com
Website http://www.tbiguide.com/

Copyright ©1998 Dr. Glen Johnson. All Rights Reserved.

[jingle]

Have you had neuropsychological testing? I was give a batch of it in, I think, Nov, '05, before I had a brain tumor removed in Feb., '06, and it was repeated 6 months later.

Now that my seizures have returned the neurosurgeon is talking about the things that have to be repeated .... even more MRIs, PET, VEEG, maybe Wada, definitely more neuropsych and there's a chance of more surgery.

That wonderful surgeon is a very sober, straight, stiff man. When I said, "I'd rather have more surgery than neuropsych.", he laughed out loud.

[flopper]

I recall the psych garbage before my second surgery in 94'. Probably had it after, but that was a long time ago.
Always wise to hang out w/ the sober surgeons.

[jingle]

LOL LOL LOL ---
The techs administering the neuropsych testings kept telling me that the test was NOT A COMPETITION and I did not have to work myself into a sweat but I'm one of those people who always has to get an A.
~sigh~

My neuropsych testing had to do with short term memory, word finding, problem solving, IQ, and things like. None had to do with "psych". A short meeting with the psychologist after the 4 1/2 hour testing included some "psych" questioning but that was it..... at least for me.

[Garney]

flopper,
thank you for the great info. When the dr.s tell you that your scan and MRI were "normal" and "lets think about this now," then put you on several seizure meds. you have to wonder. My seizures started out with one seizure thought to be partial-complex, then followed by two more in hosp. Next round same thing, except had to be suctioned. Last two episodes first seizure same as others,then followed by four very different ones in a row. Involved violent spasms of extem, along with vomiting in one case.
Now waiting to get into Dartmouth-Hitchcock for VEEG. maybe today.
Now I just have cooperate and have a seizure while hooked up
I have been writing down things in journal, then forget it when go for app.
Figures.

Garney

[flopper]

Just last week I got a call from my Neuro's. nurse. They had received my letter which I had sent informing them of my last flop (which was 7 months ago & he had not bothered to get the records of) I fully explained how my wonderful day had gone, although very little was on the hospital records. When someone has a seizure for a day+, what can they expect us to remember after they shoot the valium in? I was letting them know I added 100 mg of my drug every 3 days because of my auras also. My neuro apparently can't keep the level under control, so I am helping him out.
Since the nurse said there was no problem w/ the added dose I assume it was low, but in the normal range.
So now he has the paper in the file & hopefully he bothers to look @ it & I remember to mention it. It will be an interesting appt. I'm sure. I'm contemplating taking a copy of "Dealing w/ Doctors" & posting it in the room.