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Luke T. · Butcher Dancer

WARNING: IF YOU ARE ABOUT TO UNDERGO BRAIN SURGERY, DO NOT READ THIS TOPIC.

This is a topic about surgery gone wrong, and I don't want anyone who is about to have brain surgery to freak themselves out.

I will give you one piece of advice if you are about about to have surgery: Check your doctor out. Look on the internet and see what people are saying. I wish to God we had done that, but we didn't. It wasn't until after the surgery went bad that we looked on the net and saw all kinds of bad news about the surgeon. If only we had known. 20/20 hindsight. All that stuff.

Do it.

And now you should stop reading if you are about to have surgery. I mean it. Stop now.

This topic is for those who have had a brain injury and the people who care for them.

I thought it would be a good idea to provide some tips and tricks for the primary caregivers (spouses, parents, etc.) of people with brain injuries. Particularly for those who have suffered an injury to the fornix or fornices.

So if you were out there googling "fornix" or "fornices" this topic is for you, my beleagured friend. Welcome. Have a seat. Welcome to the world of the 30 second loop.

There is nothing out there to help you understand what is going on, and how to deal with it. Thus, this topic.

If you are the person with the brain injury, hit Ctrl+D right now, because you will forget how you got here and might want to come back.

This is a testament of hope, folks. I am going to tell you what happened, what it is like now, and what I expect will happen in the future. And if you are at the beginning of the journey, I hope to pass on to you some good advice, and to point out some pitfalls to avoid.

I know your pain and your fear and your weariness. I hope I can help you with that.

Luke T. · Butcher Dancer

Last July, my wife called me from her night class at a local college. She said her left side of her body had gone numb, like it was asleep. There was no paralysis, just tingling numbness. I urged her to go immediately to the hospital near the school, and she did.

The result was that my wife was having what is called a TIA. Transient Ischemic Attack. Also known as a mini stroke.

A subsequent MRI revealed two aneurysms in her brain.

An aneurysm is a weakness in the wall of a vein or artery. Sort of like when you squeeze a balloon in your hands and a bubble forces its way out of an opening in your hands. A similar bubble that appears in an artery is an aneurysm. If that bubble ruptures, you bleed out.

An aneurysm can be anywhere in your body. If you have one in your brain and it ruptures, you bleed directly into your brain cavity. Not good.

A ruptured aneurysm isn't necessarily fatal. It all depends on where it is.

My wife had two. One was in a fatal location, the other is in a location that would certainly present serious problems, but would not be fatal.

The neurosurgeon explained to my wife there are two ways to go after a brain aneurysm. One way is to basically saw the to of your skull off and go directly after the aneurysm and put a clamp on it, then put the skull back on. This is extremely invasive, but the most effective.

The second option is to put enter the femoral artery in your thigh and work a very fine platinum filament through our body up into your head and coil that wire up inside the aneurysm. This coil would then serve as a means whereby the blood in the aneurysm would have something to clot around. That would eventually cause the aneurysm to form into so much scar tissue.

You can see an artist's representation of the coil here: http://www.aneurysm-stroke.com/images/ruptured-after3.jpg

And here: http://ajsawatzky.files.wordpress.com/2008/08/gs_coil-procedure-cerebral-aneurysm_lg.gif

Luke T. · Butcher Dancer

The neurosurgeon recommended my wife undergo the coil procedure, rather than the clamp procedure, for the fatal aneurysm. For the non-fatal aneurysm, he recommended no treatment since both methods (coil or clamp) carry great risks.

And so on October 1 my wife entered the hospital. This was to be an overnight stay. The surgery would be done October 1, and she would go home October 2.

After the surgery was done, the surgeon showed me a paper copy of a CAT scan. I had no idea what I was looking at, but he seemed happy with the results of the surgery. He said there was a single loop of wire which has popped out of the aneurysm and was projecting into the main body of the artery, and for this reason he was ordering my wife a blood thinner (Plavix) and aspirin, and she would have to take these for six months.

What we didn't know was that during the surgery, the doctor had ruptured the aneurysm while putting the coil in. So as we sat there all relieved, my wife was bleeding into her brain. The coil was slowing down the bleeding, and so it was not immediately evident. Usually, when an aneurysm ruptures, you know it right away. The victim keels over.

The survival rate for a ruptured aneurysm is very low.

The blood thinner obviously didn't help this situation.

It was not until the morning of October 2 that the hospital realized something was wrong. My wife began exhibiting violent behavior and so they rushed her for another CAT scan and they saw the rupture.

When I was informed, I was certain I was going to be going home that day to tell our three young children their mother was gone.

Luke T. · Butcher Dancer

I will try to add more and more posts every day when I have time. If you have your own experiences to share, go ahead and register and tell us your story.

Luke T. · Butcher Dancer

The brain ordinarily produces about half a liter of cerebral spinal fluid (CSF) a day, and so that much must be drained each day or pressure begins to build inside your skull from excess fluid. There are ventricles in the brain which perform this draining function.

If you bleed into your brain from a ruptured aneurysm, the blood can clog these ventricles. So then you get a double whammy. Excess fluid in the form of blood, and CSF buildup. This quickly leads to catastrophe, and often death.

To relieve this situation, it was necessary for the neurosurgeon to perform an emergency procedure whereby he drilled a hole through the top of my wife's skull and placed a tube down into her brain to serve as a mechanical drain. He then brought her back to the ICU and we waited.

Shortly thereafter, my wife had a hellacious seizure. It took nearly half an hour for the ICU staff to get the necessary anti-seizure medication sent up from the hospital pharmacy. For whatever reason, they did not have the medication readily at hand. So my wife seized for that entire time.

Eventually, after being given the medication, she stopped seizing and then was unconscious for some time.

Finally, she awoke. And that is when it was determined she had what is euphemistically called "memory deficits".

corplinx · Reality Guru

Religious people sometimes have issues coping with brain injury in loved ones. They believe in an immortal soul. When people with brain injuries "act out" or have a "behavior", they don't know how to deal with it. They figure the "real" person is trapped inside or something. They can't deal with the fact that your brain is part of who you are and once its injured, you are not the same.

I met my wife in the summer of 2000. She had deep paranoia, memory lapses, problems focusing, and anger issues. She had right frontal lobe trauma from an accident 10 years before I met her. The accident had put her in a coma for 6 months. When we met, her voice was still "breathy" from the long time spent with tubes run into trachea through a hole.

That said, she was so desperate to find a man and settle down, that she contained her rage just long enough to land me in a marriage. Then she finally released the beast. As the Hank Hill of atheists, we did not move in together or cohabitate until after we married.

true conversation:
"Where are you going?"
"To the store to get milk."
"Is that all?"
"Yeah"
"Are you sure you aren't meeting someone there? A girl?"

The short term memory issues were the worst, I did all the cooking because she couldn't handle more than one thing at a time. She had to write down all times for the one thing she might try to cook. If you interrupted her while she was watching a TV show, she wouldn't forget the plot. The anger outbursts were the worst.

I made her see a neuropsych with her symptoms written on paper (with the threat of divorce). After a prescription for prozac, one month later she was happy. She could remember things. She wasn't convinced I was cheating on her every time I left home. She no longer thought I worked for the mob. Her sudden anger fits went away. She could prepare more than one food at a time. She still isn't perfect, but then again she does have the lingering effects of right frontal lobe trauma.

I asked her family why they let her be that way for 10 years. "We just though that was the way she was from now on". Sad.

DrMatt · Music doesn't melt in your ear, it explodes in your brain

Seen it. 2001. She was my lover. Clot, followed a week later by massive hemorrhages in several parts of her brain. Went from being an artist, community organizer, manager, and liason between several constituencies in greater Washington, DC to being an unsatisfyable child living with her parents. A little under a year into this, her parents told me in no uncertain terms to move on with my life. I still hear from them via e-mail--mostly incoherent, repetitive e-mails from her.

Luke T. · Butcher Dancer

Once she was conscious, the process of determining the depth of damage to my wife's brain began.

Fortunately, there appeared to be no physical handicaps. She was able to move her extremities and speak clearly.

However, she had lost about ten years worth of memory. She thought it was 1998, and that we were in a hospital that was close to where we had lived in 1998, several thousand miles away from where we actually were.

She thought Bill Clinton was President. When someone told her Bush was President, she said, "Still?" Laughing

She must have been thinking we meant Bush, Sr.

Over the last six months, my wife has regained nearly all of her long term memory. It came back chronologically, so that at one point she thought we lived in a house we lived in from 2001 to 2006. She had no memory of the house we presently live in until she actually came home from the hospital.

Despite thinking it was 1998, she did remember our children and their names, who were born in 2002 and 2003. But she could not state how old they were. When asked to guess, she shorted them a couple years.

Today, she remembers just about everything in the last ten years. Those events which occured in the year prior to the surgery are still pretty fuzzy, but she is able to recall them with some prompting. Once the prompting triggers a memory, she is able to recall it with all the detail a normal person does.

And despite having poor short term memory, she is able to recall events which have occured since the injurious surgery last October, which I find fascinating.

Memories are being stored. It is the recall function which is impaired.

Luke T. · Butcher Dancer

My wife's short term memory was about 30 seconds. Anything you told her would stick for about 30 seconds and then she would forget it.

With the shunt in her head which was draining the bloody CSF from her brain, it was extremely important it not be touched. Two reasons. The first being the obvious one that it needed to stay put to do its job. The second reason being the risk of infection.

If you have a tube in your head, you can feel it, and it itches. And so the natural tendency is to touch it and scratch it.

So for three days I went without sleep, sitting by her bedside, telling her every 30 seconds to put her hand down.

My wife had a routine. She would rub her chin, then her nose, then raise her hand up to scratch the site of the shunt tube.

For three days, when I would see her start to rub her chin, I would stand and intercept her hand as it rose to scratch her head.

After three days, I reached my physical limit. I began to argue with and bitch at my wife. And she began snapping back at me.

Finally, I took out my cell phone to take a picture to show her the tube going into her head. I was mentally and physically exhausted and angry. As I aimed the phone at her, she gave me the finger.

Not a high point in our marriage.

I called a nurse and lost my temper. I told them I didn't care any more. I couldn't take it. I was going home. The kids hadn't seen me in days, except for a brief waiting room visit. I was tired. I needed sleep.

Without waiting for a response, I left.

After that, the neurosurgeon ordered a round-the-clock professional hospital staff sitter for my wife.

Finally!

Luke T. · Butcher Dancer

So there's your first tip, which is probably too late for you if you are reading this.

Ask for a sitter. For some medical conditions, the insurance will cover it.

I shouldn't have had to ask. The hospital must know this is a necessary thing in such a case. This was my first time, it wasn't their first time.

But there you have it. They did nothing until I was broken down.

Save your sanity. Get a sitter.

Luke T. · Butcher Dancer

Due to the injury, my wife did not go home on October 2. She went home on October 17.

She obviously could not be left alone for even one minute, since she was living inside a 30 second loop, and I asked about rehabilitation, and that's when things began to take a sour turn, insurance-wise.

Because my wife did not have any physical handicaps, our insurance (Tricare) did not want to cover in-patient rehab.

But Tricare was not direct about that. They actually behaved very cagey and gave me quite a runaround, which was the last damned thing I needed at the time.

At first, the physical therapist at the hospital evaluated my wife for rehab at a well-known local stroke victim rehab hospital. The plan was that my wife would go from the hosptial where she had her surgery directly to the rehab hospital.

But Tricare turned it down. And here is where they started jerking us around. They turned it down because the local rehab hospital was not a member of the Tricare network.

So we found a rehab hospital that was in the Tricare network. It was an hour from home, but I didn't care. I would manage. For this new hospital, my wife had to be re-evaluated all over again.

And then Tricare turned us down again! This time, they said my wife did not have any physical handicaps and therefore did not qualify for in-patient care.

To this day, this has been one gigantic pain in the ass. It does not matter to Tricare that my wife is unable to care for herself and requires a constant sitter. Because she can walk and talk normally, we are on our own.

After being jerked around about in-patient rehab, I then started working on getting my wife out-patient rehab. And once again, Tricare jerked us around.

By this point, I was on the phone with Tricare on a daily basis. Sometimes twice a day. And they had agreed on the phone to approve out-patient rehab.

So I got my wife an appointment with the best out-patient rehab in the area, and checked again with Tricare to make sure they were okay with this particular rehab.

They were.

The first appointment was to be an all day test by a team of doctors who each specialized in the various types of manifestations of brain injury. Form this full day battery of tests, they would determine a course of treatment for my wife.

As that day arrived, my wife suddenly developed a stabbing pain in her right side.

Luke T. · Butcher Dancer

On October 26, I took my wife to the emergency room. I took her to the same hospital she had her surgery instead of one much closer to our home. I figured there was something wrong with the shunt and it would be best to take her where they had all her records relating to her condition.

The neurosurgeon had installed a permanent shunt running from my wife's skull, down behind her right ear and neck, and then into her abdomen and into her stomach. The CSF is now mechanically drained through this tube from her brain directly to her stomach, where it is digested.

After she had the emergency shunt installed, the doctor clamped it to see what would happen to the pressure inside my wife's skull. It skyrocketed immediately, and so it was decided to make the shunt permanent. The ventricles appear to be permenantly blocked.

Even if one day the ventricles begin draining CSF on their own again, the shunt will stay in my wife for the rest of her life.

When my wife began complaining of severe pain in her right side on October 26, I took her to the ER.

When we arrived, I explained to the staff about my wife's condition and my concern that something was wrong with the shunt.

Because of the location of the pain, the ER staff became bizarrely obsessed with the idea that my wife had a gall stone. The pain was where gall stone pain ordinarily is. And so they completely forget about the shunt despite my repeated insistence that it was too much of a coincidence to ignore.

The ER staff called the neurosurgeon, and he gave them his opinion that it was not the shunt. So thus began the great stone hunt.

The ER doctor ordered a chest X-ray and an ultrasound for my wife to look at her gall bladder, liver, and kidneys to see if there were any stones lurking about. At the same time, they gave her pain meds.

The ultrasound turned up nothing. Since we had been there for a while, they fed my wife a sandwich.

At this point, my wife's pain began to subside.

The ER staff sent us home. Case dismissed. Mystery unsolved.

Luke T. · Butcher Dancer

That night, my wife did not sleep a wink. Lying down caused the pain to come back even worse. Neither one of us got any sleep.

In the morning, on Monday October 27, I called the neurosurgeon. I told him my wife was stil in pain, and that there was a seroma (egg shaped swelling) at the site on my wife's abdomen where the shunt was located. This was a fluid filled sac.

The neurosurgeon again expressed his belief that the shunt was not the cause of my wife's pain.

At this point, I lost my temper. I told him I was going to take her to another hospital where they had real doctors and I was going to have them do a CAT scan and look at her shunt.

The neurosurgeon started backpedaling and told me to see another doctor (Giles) the next morning.

Who the hell is Dr. Giles, I asked. He explained that Dr. Giles had assisted in putting in my wife's shunt.

I should mention the neurosurgeon's name here. Dr. Jordi Kellog.

Luke T. · Butcher Dancer

Monday night, my boss came over with some friends. They were evangelicals and they laid hands on my wife and asked Jesus to remove my wife's pain. By this point, she was in unbearable pain.

Jesus chose not to take away her pain.

We served his disciples some cake and coffee.

Luke T. · Butcher Dancer

Another sleepless night Monday, October 27.

Of course, since her memory lasted only 30 seconds, my wife was disoriented and confused and did not understand what was happening. Her life was a 30 second loop of neverending pain.

I was in bed next to her getting angrier and angrier and angrier at the surgeons and the hospital with every passing half minute.

Luke T. · Butcher Dancer

My very Christian boss walks the walk. I took two months off from work, which he encouraged. He mobilized his considerable family and they were always at our side supporting us. He visited my wife and me in the hospital many times, and took our kids out to eat. He even paid some of our bills. He made sure we were NEVER alone. He drummed up support for various fundraisers on our behalf.

I don't know what I would have done without him.

This is a boss who has gone way above and beyond the call.

Luke T. · Butcher Dancer

Tuesday morning, October 28. We enter an exam room and Dr. Giles comes in and sits. He immediately gives off an attitude that we are annoying him by questioning the integrity of the shunt. He is downright petulant.

But I push. Hard. And he finally says, "Fine. We'll open her up and fix it." Words to that effect.

Hold on a goddam minute. You aren't even going to do a CT scan or anything to make sure that's what it is? I'll be damned if you guys are going to slice her up again without being sure of the cause.

So he gets on the phone with Dr. Kellog and comes back with an order for a CT scan.

Three days it has been now. My wife is in so much pain, she can't lie down for the CT scan. Massive quantities of painkiller are pumped into her and it barely makes a dent. But she bites teh bullet and lies down long enough for a picture.

Kellog comes striding in like Jesus wading across the sea and looks at the computer screen.

Yep. The shunt has come loose. We'll fix it ricky tick. She'll be outta here by this afternoon. And he breezes out the door.

Only it isn't ricky tick. It doesn't happen until about seven that night.

While we are in the pre-op, it is me, my wife on the stretcher, the anesthesiologist, and Dr. Giles. No sign of Kellog.

So I have a question. A half a liter a day of CSF has been draining into my wife abdomen, I say. So where did it all go? Where is it.

Dr. Giles turns his back to me and walks away. He never answers the question. I am beginning to really hate this guy.

They take my wife away and I go to the waiting room.

An hour or so later, Dr. Kellog glides in. It all went well, he says. We added an extension to the tube going into her stomach and tied it with a butterfly knot, whatever that means.

So I ask him. Where'd all the cerebral spinal fluid go? He says it all gets resorbed in the abdomen, no worries.

I then tell him that this should have been caught back in the ER three days ago.

He looks me in the eye and says, "You should have called me."

I am floored by the nerve of this guy.

"You were called! By the ER staff."

He tells me he didn't know it was bothering her so much.

Uh. Hello? We were in the ER! That's not like a BIG CLUE it was bothering her so much?

And then I remind him of the amount of persistence it took me to convince him to look at her even AFTER mentioning the seroma on her abdomen.

Dr. Kellog departs.

And my wife is checked into the hospital for the night.

Luke T. · Butcher Dancer

The next morning, Wednesday, my wife is still in a lot of pain in her side.

She's in a 30 second loop, remember. Seriously disoriented and in pain. I hope I can be excused for being an angry man during this period.

Dr. Kellog checks in. I tell him she is in pain still. I again ask about the CSF. He blows it all off.

Two more days pass. It is Friday morning. The kids are excited because it is Halloween. Dr. Kellog said last night he would be releasing my wife from the hospital this morning. I'm running back and forth between the hospital and home. Somewhere in all this chaos I managed to get the kids some costumes and they are wearing them for when Mommy gets home.

At the last minute, Dr. Kellog orders a chest X-ray for my wife.

A chest X-ray. Just like she had in the ER five days previously.

And there it is. Pleurisy. A big freaking balloon of fluid in her chest wall.

Cerebral spinal fluid.

I have since gotten a copy of the Tuesday CT scan. It's there, too. And the Sunday X-ray.

By the time I get back to the hospital and learn all this, Dr. Kellog is nowhere to be found. But then he calls.

My temper finally gets the better of me. I come completely unhinged and I lay into Kellog on the phone. It is an ugly, ugly exchange.

But that is the moment I decide we are going to sue this doctor and this hospital.

Luke T. · Butcher Dancer

Tip: Get a notebook. Get two. One for you, and one for the person you are taking care of.

Write down everything and put it in his/her notebook. Explain what happened, and what is going on. Make sure you include information about family members and friends who have been informed.

Make a note of every question he/she asks you. Write the answers down and put them in the notebook.

This will save your sanity. When someone is stuck in a 30 second loop, and you are 45 minutes from the doctor's office, that is 90 times they are going to ask you the same question during the trip.

I speak from experience. And believe me, neither one of you is going to arrive at the doctor's office of sound mind.

You will want to give the doctor a brain injury.

Luke T. · Butcher Dancer

You are in for a very, very long battle. With doctors, lawyers, insurance companies, hospitals, and politicians. You are going to be on the phone eight hours a day.

That's why you need a notebook. Take extensive notes. Of everything. Every, little, thing. Your memory is going to be taking some pretty serious hits, too. You will begin to get befuddled.

Get everyone's business card. Get two. One for your notebook, one for home.

Carry that notebook everywhere with you. And make sure the person you are caring for keeps there's with them at all times.

Put your phone number on the inside cover of those books. If you lose them, you are screwed. You will want the finder to call you.

Write down the dosages of the meds. Get one of those pill organizers that has little boxes for seven days, with AM and PM boxes.

Luke T. · Butcher Dancer

I wanted to talk about the nature of this brain injury that my wife has. I have learned a lot about the way the brain works from this.

What I have learned is that the moment that you are in is broken down into components and stored in separate locations of the brain. The visual part goes to one place, the auditory to another, and the emotional content of the moment goes to yet another.

If something happens that upsets my wife, the part of her memory that stores the emotional content is fully functional, while the part that stores the memory of what it was that upset her is broken. So if something upsets her, she will remember later that she was upset, but won't remember why.

Because of this, my wife will attempt to reconstruct what it was that upset her. If I am nearby, she will assume it was something I did.

She doesn't exactly construct a false memory, but she will make an assumption that we had a fight, and she will ask if we had a fight.

As a result, I am probably now the guy who is the most sensitive to a woman's emotions in the Universe. Very Happy

Suppose, for example, my wife is talking to someone on the phone, and the person she is talking to says something to upset her. I know my wife is going to forget the conversation but will carry the emotions forward and so I try to act quickly to get her to write down the content of the event which just occurred so that she can read it later and understand why she is feeling the way she is feeling.

This is self-preservation. Very Happy

Because of the nature of this multiple location storage of memories and having one storage location damaged, my wife says she thinks she understands the nature of schizophrenia.

That is quite possibly true and, at the least, is very interesting.

Luke T. · Butcher Dancer

I met an older man at the gym a few weeks ago who had a couple strokes a few years ago. As a result, he no longer recognizes symbols like letters and numbers. He has to remember the exact location of the gym locker he is using instead of the locker number.

But the most interesting side effect is that he said everyone now looks like Charlie Brown to him. It did not occur to me until later that I should have asked him what he looks like to himself in the mirror.

When I told my wife about the Charlie Brown thing, she said she completely understood. Apparently, everyone's voices sound the same to her now. I should say every new voice. She can distinguish between the voices of people she already knows. Me and the kids and such. She knows my voice on the phone.

Rob Lister

Luke T. · Butcher Dancer

Cool Hand · Non-conformist son of a bitch

If you have not already done so, you should read a couple of books by Dr. Oliver Sacks. I highly recommend The Man Who Mistook His Wife for a Hat. Get it and you'll understand why I recommend it. It's quite illuminating and gives glimpses into all the weird effects specific brain injuries can cause. It's a bunch of case studies from his various patients over the years as a clinical neurologist in New York. You'll probably recognize your wife in couple of them.

If you don't recognize his name, he's the guy who wrote Awakenings, based on a true story, and he is portrayed in the movie brilliantly by Robin Williams. I think it's Williams' best performance on screen.

CH

Luke T. · Butcher Dancer

My apologies for falling down on the job in this project.

Okay. More information.

You live with a constant fear that something is going to go wrong in your wife's brain every day after a thing like this happens. That something's just going to pop and she'll give you a weird look and then keel over. Or it will happen while you are at work and you won't be there for her. And so you are always feeling like a cat on an electrified metal floor all the time. Have I done everything I can? Have I anticipated every possiblility and made the necessary preparations? You collect two of every business card for every doctor. One for your big binder at home and one for work. So you can call them at an instant's notice.

You make sure the doctors call YOU when they need to see her. Because if they call home and she answers, she is going to forget to write it down and then you miss the appointment, and the next time you go there, you have a bunch of missed appointment fees you have to pay, and that adds up.

I had a neurologist do that. You think this would be the one guy who knows not to make appointments through the one who is brain damaged. But no. Ooops. Sorry about that.

Then one night, my wife says she hears a whooshing sound in her left ear. Ten p.m. on Memorial Day weekend.

She has two aneurysms in her brain. The neurosurgeon said that if the non-fatal one ever burst, I would know because my wife would hear a whooshing sound in her left ear and her left eye would turn blood red.

So my wife says she hears a whoosing sound in her ear out of the blue this night. And I go into immediate combat mode. I call a friend who lives a couple blocks away to come sit for the kids. They are sleeping upstairs. And off we go to the ER.

I explain what is going on and why she is there and they go into combat mode and put her at the top of the list. She gets a CT scan. They don't see anything but suggest a follow-up with a neurosurgeon for an angiogram. This all took hours, even though she was at the top of the list.

Okay. I have to get her an angiogram. That involves an invasive procedure and I have vowed not to let the neurosurgeon who nearly killed her to ever lay his hands on her again. This means I need to find another one.

I had tried to get another to take her case less than a month after this nightmare all began but he didn't see what he could do for her at that point. All the damage was done, and there was nothing more to be done.

But now she needed something done and that opened the door for me. So I contacted him again.

There are only four of these guys in the area. Neurosurgeons are far and few between, which only stokes their egos that much more.

This new guy agrees to see her. I make the appointment. It's an evaluation appointment and he decides an angiogram is not necessary, let's do an MRI instead.

Okay. But she has an electronic shunt which has to be reset with a special device after an MRI, I say. Does he have that doohickie? Of course not. That's a different guy. So now we have to coordinate two separate doctors at two separate medical facilities across the city from each other to perform two procedures in the right order within a narrow time frame on the same day. As soon as possible.

Good luck with that, right?

It didn't help that the MRI doc told me he would make all the arrangements and then promptly forgot to do so.

Because he forgot to do so, the insurance window shut. Suddenly, it isn't an emergent problem any more because time has lapsed and if it was emergent, we would have asked for approval sooner, right?

This is our life. This kind of shit.

So after many apologies for dropping the ball, the MRI doc makes the arrangements. Except now we find out the other doc he had in mind doesn't take our insurance. And so we have to find another guy. Which he does and finally, a month later (!), everything is all set.

Except we haven't gotten pre-approved by the insurance company.

To hell with it, I say. Just give me some papers to sign and let's get this freaking ball moving again!

So we do the MRI and I drive her across the city to the other doc and we get the shunt reset.

In order to get the whole ball of wax approved, I have to get her regular family MD to convince the insurance company this was all necessary. So that's a THIRD doctor I have to bring into the picture. And this guy is great. He goes to great lengths for my wife. He's terrific. He is your country doctor right out of central casting. I love this guy.

And that is what it takes to get one MRI for a wife with a ticking time bomb in her head.

Fortunately, the whooshing sound left.

We get the results of the MRI next Thursday, July 30.

When was Memorial Day?

Cloverlief · Me by Me

I'm glad your wife is doing better, Luke. I like to hear how she is doing. I think about you and her a lot, and wonder how everything is going.

I don't know the docs in Oregon, but if you came to Nevada I could give a few good references. Smile

Hang in there. I know it is difficult, but you are doing such a good job.

Luke T. · Butcher Dancer

Okay, check this out. This is huge and will go a long way toward helping you help your brain injured love of your life.

There is a story on National Public Radio this morning about something I figured out at the very beginning of this whole mess. It's weird I figured this out right away and doctors are only now getting it.

Emotions Outlast The Memories That Drive Them

In the beginning, when my wife's memory was about 30 seconds long, I noticed that if she had gotten upset about something, long after the memory of what upset her was gone, she would still be sad or upset.

I realized that the emotional content of a memory must be stored in a different place than the visual or auditory content of that memory. So while her visual and auditory memory was erased, the emotional memory was not.

So if my wife was upset, and could not remember what upset her, she would vainly attempt to figure out why she was feeling upset. And if I happened to be sitting there, she would assume it was me who upset her.

This caused no end of problems for us, as you can imagine. It got so if she was talking to someone on the phone and I could tell she was getting upset at that person, I would be like, "WAAAAIIIIIT!!!"

It's funny now, but it wasn't then, let me tell you. She would ask me many times a day if things were okay between us, because having a brain injury is extremely depressing, and so she was sad all the time. And she kept connecting her sadness to me. And then she would get sad that she couldn't remember what had made her sad, and it became a vicious cycle.

And to be honest, there were days when it was me who had upset her. I was also losing my mind. Having a person ask you the same questions every 30 seconds for weeks on end starts to really wear on you.

And I was angry at the doctors for completely destroying our lives, and I had no way of venting in a healthy way. It is just sheer anger and frustration that is impossible to convey to anyone who has not been through it.

So our marriage was certainly strained.

Over time, doctors and nurses started to express their surprise that I was still with my wife. It turns out that most relationships self-destruct in these types of situations. The healthy one bails more often than not.

I cannot imagine the shape my wife would be in today if I had bailed. It saddens me terribly to even think about it. And it saddens me to think of all those people out there who have been abandoned.

But there is good news, folks. Next post.

Luke T. · Butcher Dancer

So it occurs to me not long after figuring out this emotional memory thing that this can be turned to advantage rather than disadvantage.

Maybe I should write a paper about this, because if doctors are just figuring all this out, they probably haven't figured out the great advantage you can take out of it.

I figured that if bad emotions stick, then positive ones must, too. And so it became my mission to create gigantic positive emotional spikes in my wife's memory, with the hope that if the spikes were great enough, perhaps the context of those memories might stick a little, too.

I can tell you right now: IT WORKS!

I started taking my wife to out of the ordinary places. And since the whole family was affected by this thing, I took all of us to out of the ordinary places, and while we were there I would splurge and try to make it as over the top as possible.

So when the Barnum and Bailery circus came to town, we went. And I put the kids on the elephant ride, let them buy whatever candy, popcorn, drinks, and toys they wanted, and generally acted like a big kid.

Sure enough, my wife remembers that event to this day. And those months are one big dark patch for her. She just recently told me she thought she had been in a coma. It was a suprise to her to learn she hadn't.

But she remembers the kids on the elephant.

She remembers all the special things we did for the last year and a half. Every bit of it.

Recently, we took a trip to a big city and stayed in a rock star room. Signed guitars and gold and platinum records on the wall. Coldplay, Gin Blossoms, etc. Coldplay is one of her favorite bands. This was an unbelievable suite that cost me a bleeding fortune, but she will never forget it.

Nor will the kids.

And her memory is continually improving. All the time. It is still improving to this day.

So never, ever, ever give up. You WILL get your wife back.

hammegk · Curmudgeon

Thanks for writing that, Luke. Smile

Your actions are admirable.

Cloverlief · Me by Me

You are doing an awesome job, Luke. I am sooo glad your wife is improving, and if you had bailed like so many, she probably wouldn't be doing as well.

DrMatt · Music doesn't melt in your ear, it explodes in your brain

Wow, way cool.
Luke, I am forwarding a link into the middle of this thread to somebody who I think can use it. It's anecdotal so it might not apply to others---but I can't miss the opportunity.

This link.

http://www.skepticalcommunity.com/phpbb2/viewtopic.php?p=527811#527811

Abdul Alhazred · "If I turn in a sicko will I get a reward?"

The GM

Luke T. · Butcher Dancer

For those who have a brain-injured/memory-impaired spouse, let me tell you about a whole new kind of argument you will one day have with your loved one.

When someone has a memory loss, if they are lucky, they will receive some cognitive therapy from a professional who will teach them some strategies which will help normalize their life.

In this modern era, laptop computers, cell phones with a million apps, and the humble Post-It note pad can make life seem almost normal for the brain injured person. Take lots of pictures of people you meet that you will see again, and write "notes to self" that will keep 3M (the company that makes Post-It Notes) in business forever.

I now buy generic sticky notes in bulk. And they must be eye catching multicolored notes. Not the yellow ones.

So here's the deal: If your loved one does not write it down, it gets forgotten.

Genuinely forgotten. And you have absolutely no defense against that incredible reality.

Eventually, and I don't know if this is a conscious decision or what, they begin to not write down things which will later cause you no end of annoyance. And then what do you got? Someone who actually forgot that you told them something, and you have a sneaking suspicion they are being selective in what they choose not to write down, and the selectiveness of this behavior begins to make you suspect the stuff being forgotten is awfully convenient in its timing and effect.

Honey, here's some money to last you for the week. It is just for milk and bread and incidentals like that. Don't spend it on anything else, and make it last the week.

Because you have to do all the grocery shopping now as a matter of a hard lesson learned along the way, but you figure she can handle bread and milk by now, so you allow a little slack.

And then...

You come home, there's a $20 ham in the fridge that wasn't there before, even though there's a freezer full of meat that you bought, and the wife says she needs money to buy some milk and bread.

Your loved one has been expressing a lot of resentment at their loss of independence, and when you discover they did not write a note to self that the money was for milk and bread, you begin to get suspicious.

And that is how you find yourself in an argument with your loved one telling them, "YOU FORGOT THAT ON PURPOSE!!!"

Sad

Luke T. · Butcher Dancer

You will come through this either a very bitter person, or you will come out of it with a lot of patience and one helluva sense of humor.

I highly recommend the latter. My wife and I actually have far less arguments than before, and we both have learned how to laugh at this disaster. Gut busting laughs. And there is nothing on earth that will tear us asunder.

We recently visited my family. Things are chaotic as hell back there.

My brother's wife and I were talking and out of the blue she said, "I don't know where you got your patience, but it sure wasn't because you are a member of THIS family."

Laughing

Luke T. · Butcher Dancer

There is an upside to memory deficits.

Whenever my wife's birthday or Christmas or our anniversay is coming up, I offhandedly ask my wife when she is nowhere near a pen or paper what she would like for her birthday/Christmas/our anniversay.

You can see where this is going.

She tells me what she wants, and then promptly forgets the conversation.

I am the first husband in human history who gives the perfect gift every time. You should have heard her shout of glee the day I gave her a ring for our 10th anniversary that she had no recollection of picking out.

Twisted Evil

One of my co-worker's says, "There is a fine line between evil and genius." Very Happy

Cool Hand · Non-conformist son of a bitch