May 06

I’m Still Here

Tag: brains,healthDonna B. @ 9:05 pm

You know the old saying about when it rains it pours. It’s been pouring around here for a while. And you can bet your sweet bippy I’m not about to ask what else can go wrong!

Most of what’s gone wrong has resolved or is well on its way to being resolved. One issue (that I’m not going to write about) I’ve simply shoved away for a time.

One issue I will write about is my worry that my husband was developing a dementia of some sort on top of his numerous well-documented (and mostly well-treated) physical problems. Finally, I get the courage and impetus to broach the subject with him and we see his doctor.

Sure ‘nuf, he flunks the mini-test warranting further exploration. The first thing done is an MRI to rule out stuff. One of the things to be ruled out is normal pressure hydrocephalus. And the MRI indicates that might be the problem – but before we get those results back, he passes out and falls hitting his face on our metal trash can.

I hear the crash and find him conscious, but not coherent at all. I call 911 and refuse his requests to help him up. I’ve got to compliment the Shreveport Fire Department and EMS people. They got here quick and they were as compassionate and helpful with my panic as they were my husband’s disorientation.

So we’re off to the ER and find out about the implications of the MRI and that other causes of fainting now have to be ruled out also. Then we experience the horror of being hospitalized over the weekend.

It took approximately 6 hours for my husband to return to “normal”. It was very much like being with someone coming out of anesthesia, though maybe a bit slower. We were told by various representatives of specialists that several tests needed to be done. The first was 24 hour heart monitoring. By the time that was finished, we were told (on a Saturday morning) that the other tests couldn’t be done until Monday or later.

Now… there’s nothing worse than being in the hospital when you feel as good as you ever do… or “fine” if that’s the word to use. The remainder of these tests — a specialized MRI, EEG, ECG, tilt table test for orthostatic hypotension, etc., are all tests that can be and are routinely done on an outpatient basis.

So… perhaps we were wrong insisting on going home. However, I’m not sure that these tests would have been done sooner had he stayed in the hospital.

After leaving the hospital (not against doctor’s advice btw) I ran into more trouble than I’ve ever had before scheduling these various tests. One of the problems turns out to be that the hospitalist intern was now acting (or trying to act) as primary care doc – and he would certainly not be the doc of our choice. Another problem was that the consulting cardiologist in the hospital was also not the cardiologist who has been treating my husband for over 15 years.

Then there was the crazy neurologist. Yes, crazy. My husband and I had both been referred to this neurologist a few years ago and the best way to describe his diagnostic technique is that he refuses to diagnose. So… we were not thrilled, but also felt we had no choice but to try to use him.

There’s a lot of appointment making strangeness, but I’ll not go into that right now.

As it stands now, my husband is having a cardiac cath done next week because he failed the stress test needed to clear him for surgery to install a shunt to treat the normal pressure hydrocephalus.

Of course during all this, I get my annual cold which turns into bronchitis and am pretty much out of commission for a few weeks.

We have an appointment with a second neurosurgeon also. As of now, the main differences between the two neurosurgeons is the brand of programmable shunt they use, the ease of interacting with their staffs, and the location of the operating room… and, of course, their reputations.

One of them is the chief of neurosurgery at LSU medical school and hospital. He practices with a group of neurosurgeons that has managed to not renew the practice’s domain name, has an indescribably poor telephone system that makes making an appointment next to impossible, and… includes the neurosurgeon that scared the hell out of me a few years ago about my meningioma.

I do not think that the neurosurgeon that I rejected a few years ago reflects on the skills of the chief of the department. But I have to ask why the department continues to allow a doctor whose physical impairments quite clearly portray an inability to operate to continue doing so.

The other doctor is one who just might have what I think could be an unethical relationship with a medical device manufacturer. This is merely a suspicion… and I do NOT think that doctors who look to the manufacturer of devices for training are necessarily unethical.

Regardless which surgeon we choose, this is a no guarantees procedure. First, there’s no way of knowing whether his dementia symptoms are caused by the normal pressure hydrocephalus. And there’s also the possibility that some are and others are not. The surgery itself is sort of a test to determine cause.

It’s also a step that I think must be taken. The possibility that this surgery can stop the dementia symptoms where they are now (mild) cannot be discounted. The possibility that the surgery could reduce the symptoms cannot be overlooked, even though that is not likely.

Of course, he could have Alzheimer’s or some other dementia as well as having normal pressure hydrocephalus dementia. I can’t say that is a reason to not have the surgery. One cause seems better than two, doesn’t it?

So… we wait. We’ll see.

Next up – what’s with this shortage of drugs?

3 Responses to “I’m Still Here”

  1. Jim says:

    Donna, please keep us up to date. Will be thinking of your husband and you.

  2. Donna B. says:

    Thank you, Jim.

    This entire episode has been an eye opener for me in several ways. I’m not a newbie when it comes to brain injuries (I’ve dealt with my son’s severe closed head injury for more than 20 years now and my meningioma for 5 years, not to mention my mother’s several strokes).

    In a way, I feel sorry for the doctors. They are truly trying their best and they are faced with diagnoses that little can be done for. In another way, I wish they’d be honest with us and tell us they don’t know. Of course, that is not quite true either… I WANT them to know. I want them to fix this!

    While I try to be reasonable, there is a part of me that rants “we can send a man to the moon but we can’t fix “whatever”?

    I’d truly hate to be a doctor who could diagnose a disease but not be able to figure out how to alleviate it. Think of them too.

  3. Dr X says:

    Oh my! Donna, I wish you and your husband the best.