wrote this last night, but couldn't save so here you have it-- leftovers

Still in hospital... *sigh* There's been some recent beaureaucratic upheaval that has had a number of the "old" (translated: good) nurses to greener pastures, but in general things are holding together and haven't been too terrible.

I'm almost at two weeks here. Not at all what was planned. If surgery (#2 for this admission) on Monday goes okay, I hope to be the hell out of here (not just hospital, city too) by the end of the week.

One thing that is concerning me slightly (more annoying, really)..... is my EEG. They did the regular 45-min test, and had a neurologist come talk to me for a few minutes while I was all wired up. Nicest neurologist in the world, and seems pretty damn smart in addition to being humane, kind, etc. (other than the fact that he now seems to be blowing me off...)

The day after first EEG, the same bubbly tech knocks at my door, tells me I've got to move to a room that has video surveillance so they can watch me while doing a 24-hr EEG.
All the tech could tell me was that Dr. H had seen something 'abnormal' in the initial test and wanted to gather more data.

More than 24 hours passed, and my neurosurgeon finally came in to ask if they could do a spinal tap and see if lowering my intracranial pressure changed the EEG. Of course I said yes, mostly because the tap would temporarily relieve my miserable headache... He still couldn't tell me what seemed wrong with the EEG.

Up to speed now, basically... After 3 days, the wires came off and I still knew nothing. I mentioned to the tech that I still didn't have any idea and she plastered on a huge fake grin, saying through her teeth that she was sure I'd see Dr. H soon.

.... All of that took place last week, and I was told yesterday that Dr. H would come see me in the afternoon. He never came.

One of the neurosurg residents, upon questioning, said that they know nothing beyond the fact that the results were abnormal... !#&**&$(*@

I am so sick of being here.. But if I weren't, my pain would be worse than it is now (which is pretty damn bad, I'd be dehydrated, vomiting, etc.

Whine, whine, whine. OWwwww. I figure since it's my blog I can bitch and moan, though that didn't start out as my intent.

I'll probably "recycle" a few of my earlier, more science-y posts.

Ugh I tried to add on a bit for todAY- sooo much pain and loudnes, my clumsiness.. there's jst no way. brain-fingertip payhways seem to be blocked off indefnitely.


still in hell

Quick entry, from this boring and painful place..

Surgery did not go as planned, so they'll have to go back in again. We are arguing the details of that a bit right now. *sigh* The infection on the back of my head must go away before we do anything... Unfortunately they weren't able to get good cultures b/c they didn't find the infection until they had already given me the standard IV antibiotic.

The really annoying thing is that I told them a few months ago it was infected. God forbid they believe me.

I am currently on a 24/7 video-monitored EEG... There does seem to be some seizure activity. Strange waves.

So tired.. sick of arguing with these people. My neurosurgeon is great, but we have a tendency to argue about EVERYTHING. Good thing it is friendly argument. I guess.

Head hurts. *sigh*

Signing off for now, just loving my time in hell. :( I was supposed to be going HOME tomorrow!!!! Instead I have to wait with these wires on, be discharged, wait, come back for more.


And my hair is gone. Just fuzzy, scarred scalp. *tears*


the holy water is causing problems again

I have a number of entries I am planning to write, once I'm back on my feet. Even a funny one!!! Imagine it... ME, write something humorous?? It's in the works. :)

Before I get to the "publishing" stage, though, I have some unfortunate business that needs to be attended to. Surgery first thing tomorrow (Monday the 14th) morning, so I am not quite sure when I'll post again.

My head may look like this again, only imagine it *plus* another (much larger) incision towards the back, and a few smaller cuts as well. Actually, I *might* be able to salvage my hair somehow this time. Maybe. Fingers crossed!! If it looks anything like a comb-over, though, the clippers are coming out. My neurosurgeon (not the one who made the cut pictured) is careful about shaving as little as possible, so we'll see.

Two words that I intend to remind the neurosurgery team of in the morning: OPIATE. TOLERANCE. (Hell, it doesn't even have to be opiates. Substance tolerance.) They seem to forget every time, somehow, and are then surprised when little teeny doses of meds do nothing. I am so used to all the different medications used pre-op and post-op that the "normal" routine just doesn't work for me.

Sure hope they've figured it out by now. The resident on call this week is the same one who let me go the entire night after an open abdominal surgery with no pain meds. None. I hate him. :(

my very rudimentary rendition of the ventricular system.. from memory, so forgive me if it's awful. :)


advice for humiliation

A situation that is haunting me... Yes it's in the past, but the memory keeps tugging at me. It leaves me wondering, What should I have done then? What can I do now to make peace with the situation? I so wish I knew the answers.

What happened was this:

In 2004 I was at school on the east coast. (i'm at home on medical leave at the moment) I had a new GP there who seemed great and was affiliated with a well-known and highly respected teaching hospital.

In October, I suddenly developed all the symptoms of shunt failure. As it was a Friday, my GP advised me to go to the ER at her hospital, which I did. The ER docs were excellent. A CT of my abdomen seemed to show something wrong with the distal end of my lumbar shunt. A spinal tap showed that I did indeed have high intracranial pressure. The ER docs felt it would be best if I were admitted overnight for pain control and neurosurgical evaluation.

My optic nerves looked fine at this point. Which is consistent with my history of not showing papilledema (optic nerve swelling) even with very high intracranial pressure. There is a decent body of medical literature out there about intracranial hypertension without papilledema. It's a well-documented variation of the syndrome, and ICP cannot be judged by the state of the optic nerves alone. Some people, like me, do not show papilledema most of the time but then mysteriously have it at other times. As of yesterday, my nerves were badly swollen.

So, I was admitted to the hospital under the care of one of my GP's partners-- We'll call him Dr. Gold. He seemed nice, and called for a consult with pain management. The pain doc came by and prescribed a muscle relaxant and increased my dose of amitriptyline. A neurosurgery fellow came in and went over my history, etc. I was then told I should stay for a psych consult- the psychiatrist on call that weekend came by, seemed nice enough, okay.
Saturday the chief of neurosurgery also comes by and takes a thorough history. I never see him again.

I lose some time... God only knows what happened, I was so sick, upset, tired, bored, lonely, that I really don't remember.
They still don't discharge me or offer to fix the broken shunt. It's now Monday and a different psychiatrist comes around. Dr. Gold comes by with one of the fellows from clinic, and I am under the impression that neurosurgery is still considering the shunt problem and best approach to management.

Tuesday the psychiatrist comes by again. I complain to him that neurosurgery has not been back to see me since Saturday, and that I am also clueless as to what is going on- And one thing I do not like is being left in the dark. He asks me if I might find it helpful to meet with all of the doctors so that they can all talk to me at once and tell me what the plan is. I agree that such a meeting is a good idea, and he leaves saying he'll set it up.

Wednesday, no meeting. On Thursday, six (count 'em) MD's walk into my room and stand around my bed. Now, I don't know about you, but my idea of a meeting involves sitting down on equal footing to talk to these people. It is highly uncomfortable for me to be entirely alone with no friends or family to support me, and so many people towering over me in the damn hospital bed. This is not the kind of meeting I had in mind. But okay, roll with it, it's okay.

Dr. Gold is there with a couple of his associates. The neurosurgery fellow is there. The psychiatrist is there. The chief of pain management is there. Here comes the humiliation.

The neurosurgery fellow takes the lead and tells me there is nothing wrong with me. Nothing. I am absolutely stunned. I thought I was done dealing with people to whom I have to prove my history. I counter him with questions about shunt function and my clearly abnormal opening pressure from the spinal tap. He blows me off in an extremely rude manner.

Me: Tell me how I knew my shunt wasn't working, then, if there's nothing wrong with me?
Neurosurg: Well I think your shunt hasn't been working for a LONG time and you just happened to choose to come in now.

What? What the hell is he talking about? Why is he talking in such a condescending manner? Why would I lie about something like this? I tell them that unfortunately, yes, I do have pseudotumor.

Pain Mngmt: But you don't have papilledema. You can't have pseudotumor without papilledema.
Me: That's not true. There are plenty of cases- It's called pseudotumor cerebri sine papilledema.
Pain Mngmt: [turning to neurosurg] Really. How often does that happen?
Neurosurg: [looking directly at me] It DOESN'T.

Who is the pain guy going to believe? The young patient, or the "experienced" neurosurgeon? Surely not the patient.

Me: What about the Chiari malformation?
Neurosurg: You don't have that, your MRI is fine.

Not exactly. The MRI that he was looking at was very old, done before I ever had a shunt. I did have 4 mm of tonsillar herniation in those films, which by itself might not be considered diagnostic of Chiari I malformation. But with a retroflexed odontoid, flattening of the skull base, and a heap of other "small" abnormalities it all adds up to decreased CSF flow, a crowded foramen magnum, and a diagnosis of Chiari I.

In my more recent MRI, which he did not look at, the herniation was much larger, and the CSF spaces around the cerebellum were all but obliterated. Cine-MRI showed greatly decreased CSF flow both anterior and posterior to the cerebellar tonsils.

Dr. Gold: That diagnosis was based on a bad paper from an even worse journal. You do NOT have Chiari.

What?? Why are these people talking in such militant tones?? My regular neurosurgeon is considered one of the leading Chiari experts in the country. He has worked with these people and they know him. They know that he is well published and respected.

Me: But Dr. Frim is the one who diagnosed me with Chiari. Haven't you talked to him about this?
Dr. Gold: Doctor Frim agrees with us that there is nothing wrong here.

A bit of fear ran through me. I know my neurosurgeon better than to believe that, but... what if he really did agree with them? Who was going to help me now?

At this point I began to cry. It is rare for me to cry about anything at all, but I was caught so off-guard by this. Like being punched in the gut. I didn't get it- why didn't these people understand? Why were they being so hurtful and insinuating that I was only there seeking some kind of sick fulfillment? They all but said the word Munchausen's.

Tears literally pouring down my face at this point, I could hardly talk.
Enter Dr. Gold: Well, Bronwyn, what I want to know now is why are you crying? We just gave you GOOD news. Shouldn't you be happy about that? What's so upsetting about the great news that you've just heard?

Me: [literally choking on tears at this point] I am crying because you're wrong.

Things went on from there, but writing it out in this detail is just upsetting me all over again. One of Dr. Gold's fellows literally shouted at me at one point, after I asked why they bothered to keep me in the hospital for so long if they didn't plan to help me. She took this as a personal insult and totally lost her cool.

Nothing is wrong, nothing is wrong, nothing is wrong. So discharge me then. Fine, we will. We've scheduled you for an ophthalmology consult tomorrow morning, even though we know it won't show anything. All you need to do is follow up with psychiatry, because we think this is more of a psychiatric case. And check into acupuncture sometime.

They shuffled out and left me there, sobbing because I felt so let down. I had trusted these people. I stayed in the hospital for almost a week believing that they would help me. Instead they pulled the rug out from under me. Told me it was all in my mind. But go see the eye doctor anyway.

I was so upset I very nearly cancelled the eye appointment. But I went, and after a dilated exam and photos of my optic nerves, guess what the ophthalmologist's final diagnosis was?

Pseudotumor cerebri, chronic. I hope to God that the ophthalmologist's letter made it to every single person who was in that room brow-beating me for almost an hour.

There are a few crackpot neurosurgeons out there who will diagnose anyone and everyone with Chiari and do surgery on them- These neurosurgical "hacks" do exist, and have even been featured in mainstream media for their radical practices.

My regular neurosurgeon is not one of those hacks. He is chief of pediatric neurosurgery at a large teaching/research institution. He publishes frequently in respected, peer-reviewed journals. He treats both children and adults with Chiari and related problems such as pseudotumor.
My brief fear that he agreed with those six doctors was unfounded. He backed me up, and helped me where they would not. I never have to see any of those six people again.

But that "meeting" still haunts me. What did I do so wrong that they would not help me? That they decided I was crazy? What can I do to seek closure? How can I restore my dignity? How can I let them know that what they did wasn't right? That it was hurtful and humiliating? Indeed, that it was the most humiliating experience I have ever faced?

Maybe I didn't portray the situation very well in my writing here, I don't know. Writing about it has me crying again, though, and my back is sore from today's spinal tap. Severe papilledema and my highest opening pressure ever. I wonder what they would say to that.

I'm so upset about my current situation, the past, just.. everything health-related right now. I wish I could wake up one morning and just ignore all this. As if that were possible, when my sight is at risk and my head is pounding.

God knows if this entry even makes sense. So much for keeping my chin up tonight. I'm sure things will look better in the morning, though.


and it kicks you when you're down

I need to post some informative stuff, like my first couple of entries about euthanasia and spinal cord injury. Something useful will surely make its way back to the pages of my blog someday soon. This is not that day, however.

I saw my internist today, told him I have really been feeling bad. He brushed that off with the usual, "You're looking good though," comment. I mentioned my desparate insomnia. "I don't just throw sleeping pills around, you know." <--- wtf?! The man has known me for four years. I have never been anything but honest and compliant. Now he acts like I am simultaneously stupid and drug-seeking. Thanks a lot Doc.

We've known for a little over a month now that my lumbar shunt is totally non-functional. The discussion about what to do next has been ongoing with my neurosurgeon. I am on Diamox, even though it's never helped in the past. Surgery can be scheduled at convenience because my eyes look fine.

Or rather my eyes DID look fine. No more. After he finished blowing me off, internist decided, ah why not have a look through the old ophthalmoscope. Usually this is ho-hum for me; I stare into the distance while the scope clicks and the doctor says everything looks fine... Which is pretty much what happened today, except for that last part. This time it was all drama as the internist announced frank papilledema OU. (swelling of the optic nerves- both eyes)

"It does not look good in there at all." <---- phrases like this, repeated many times. "You need to get that shunt fixed, ASAP. You've gotta get out to Chicago!" More drama as a plan of action is formulated. I'm sent downstairs to the retinal specialist whose exam discloses a "possible left afferent pupillary defect" and, you guessed it, nasty-looking papilledema in both eyes. There is talk of the ER for a spinal tap. Finally I am allowed to drive home after promising repeatedly that I will call internist first thing in the morning and show up @ hospital for a spinal tap at some point tomorrow.

My thoughts throughout this whole thing can basically be summed up in one word: Shit. ...This is the last thing I needed right now. All of this just confirms for me what I told my PCP at school- No matter how bad you think it is, it can always get worse. I said that in reference to pain. But it rings true for general illness as well.

One thing I wondered about today was my internist. He seemed thrilled in a way to be playing the gallant discoverer of something terrible. It was as though he enjoyed the drama, for it was a "good catch" on his part, and an emergent problem that he could volley to a trusted colleague-- All the while displaying his deep concern like a war medal.

The above thoughts may not be fair. I like my internist a lot, he's a great person. He does have true concern for his patients, and always good intentions. His integrity is obvious. So why can't he actually listen to me for once? I am willing to trust him, but he has to accept my trust. And what about trusting me, after all this time? Why does he so frequently blow me off? I can't help but think that maybe (just maybe) the visible papilledema will give some clue that I am truly in pain when I say I am, even though it can't be seen.

The invisible pain thing could start another rant entirely. My father refers to me as a "stoic". Even as a young child, I rarely cried. When I was two, I smashed my hand in the hinge of a very heavy wooden door. I bled heavily, and stitches were necessary. Throughout the injury and its treatment (so the story goes), I did not cry. Why, having lived daily with pain for so long, would I act any differently now than I did then? Why is my word not enough?

This turned into a total ramble. I was going to find a fundus photo to illustrate papilledema, but I am too tired and achey at the moment to do so.

Sorry for the incoherence. I'm pretty bummed.


The End of the Beginning

So, I've described the beginning of the story in the previous two (agonizingly long) posts. The problem with this story, for me, is that it doesn't really seem to go anywhere after a while. The details dissolve into tedium-- Things happen, mysteries arise and are brought to bear, characters are introduced and cast aside, crises are diffused... But all these elements are present in any story. Still, there is an amount of summary needed in order to bring the story up to date.

What I didn't realize in "The Beginning," is that my trip down the river was a baptism of sorts. My journey through the pouring rain was passing time as I drew closer to a world that, some few years later, I have come to know too intimately. I have learned the language, the reasoning, the inadequacies of this new world, through immersion.

Soon after my return from the canoe excursion, I sought medical advice. I saw a young GP who was fresh out of residency and had no clue what to do with me. He referred me to a neurologist along with copies of my (normal) brain MRI, normal labs, etc. The neurologist ordered more tests, all of them normal. Over two months had passed since the canoe excursion, and I was feeling awful.

Running out of ideas, the neurologist at last ordered a lumbar puncture. This was scheduled to be done under fluoroscopy at the hospital next door. To this day I am not sure why, but I was not at all afraid. The radiologist made note of my calm manner as he scrubbed my back with betadine. He was quick with the needle, and I suddenly felt a spray of lukewarm fluid over my back. Then the manometer was attached. "That's the highest pressure I've seen in a long time! No wonder you're feeling like shit. This should make you feel a lot better," he said, and drained about 30 cc's of crystal-clear cerebrospinal fluid. I felt like a fog had been lifted from me when he was done. It was incredible, and I was giddy with relief.

It so happened that I had heard of this condition before. They called it pseudotumor cerebri, or idiopathic intracranial hypertension. It wasn't supposed to happen to me, though-- It was a disease of morbidly obese, middle-aged women. Not thin, healthy teenagers. Happen it did, however. Before I left the hospital that day, the radiologist warned me that the local doctors might not be so willing to accept this diagnosis, and that I might have problems getting help. Little did I know, then, how right he was.

I would eventually have to travel by plane to a large teaching hospital to get an official diagnosis and treatment. The doctors in my hometown would not diagnose me because I didn't fit "the profile" for the disorder, though repeated spinal taps showed consistently elevated CSF pressure.

After many months and many medications, I was still in agony and barely functioning. I had a VP shunt placed, and revised. Then there was the LP shunt, and a revision. After all this, still I knew something wasn't right. My head ached terribly, I was still falling, vomiting, seeing trails behind moving objects. Then there it was-- the answer right in front of me, apparent even in the first MRI done nearly three years earlier. A congenital malformation of the skull, Chiari I malformation.

With the Chiari diagnosis, I had to start all over. A new hospital in a new city, with a new neurosurgeon. Which is where I stand today, having exhausted most of my options. This is why I say the story never seems to go anywhere, though I know my doctors are giving me all they can. There is no cure, and my body seems to have fallen to pieces over the course of a few short years. There is always something wrong, and I can barely dare to hope that someday it might be different, that the story might have some closure despite the permanent marks it's left on me and those I love.

I've been reminded repeatedly in different ways that I will never be normal; In that way, too, the story doesn't move. The goal is, in the words of my surgeon, "to be normal enough." Something that's hard to do in this new world where the only norm seems to be abnormality.

None of this has really been edited, so don't shoot me for the tediousness of it or for any mistakes... I hope I didn't bore anyone to death.

The Beginning, part two

When we reached a suitable spot for camp, my tent-mates pitched the tent, and I again lay on the rocks with my raincoat over me, now shivering uncontrollably. None of the adults seemed to notice, but my friends at this point were beginning to worry. As soon as the tent was up, they helped me inside. They helped me out of my soaking wet clothes and into pajamas. I crawled into my sleeping bag [still seeing white out of my left eye], shivering even more violently. My head had begun to ache, a terrible weight at the base of my skull. I felt intensely cold, and my friends piled their sleeping bags on me, telling me I was actually feverish. I could hardly speak to them.

Something was terribly wrong, it was clear. My head had never hurt so much in my life, and my entire body began to swarm with pain. My friends sought out one of the adults, who came briefly, stuck her head in the tent and told them just to keep an eye on me. To this day I am grateful for my friends, who gave up their own comfort to keep watch and care for me through the night.

Amazingly enough, I was able to sleep that night. When I woke in the morning, soaked and dripping with sweat, I could see! -- Sight never seems so precious as when it has been lost and regained. My head still pounding, my hands curling at their own will into fists, I was at once grateful and frightened, still sure that something was not right with me.

The canoe trip dragged on several more days. I was in terrible pain, but my motivation was clear—no one else was going to help me, so I had to help myself. I ate nothing, drank little, and steered clear of the adults, at whom I was now angry as hell.

My stubbornness kicked in and got me back to town in one piece by Saturday evening. I had been gone for less than a week, but my mother looked at me like I was Martian. ”What happened to you??!” So I, exhausted, hit the high points of the story and begged to just go to sleep and find a doctor after the weekend. As I was out of the “acute phase,” my parents warily agreed to this. They told me to go to bed, which I gladly did, though the continuing pain made real rest an unlikely happening.

To be continued...


The Beginning, part one

It was early summer, and my head ached... No, my head screamed with pain. On a peaceful Sunday afternoon, what had started out as a mild, “take two aspirin,” kind of headache seemed to blossom exponentially into overwhelming pain. With tears in my eyes, I pulled the curtains and crawled into bed, eventually drifting into merciful sleep.

This severe head pain was unusual for me, but when I woke Monday everything seemed better, so my mind turned to other things. Specifically, to packing for a week-long canoe trip on a small, somewhat isolated river north of my home. I was to depart early Tuesday morning, so I spent all of Monday cramming essentials into my watertight bag, thrilled to be paddling through wild country.

Tuesday morning came all too quickly, and left me groggy from far too little sleep. All the same, I was eager to go. It would take several hours by car to reach our launch site, and everyone was ready to get started. My eyes began to ache vaguely, and I removed my contact lenses, assuming they were the problem. The ache lingered as I did my best to ignore it.

In the car, the ache in my eyes continued until, just as we reached the launch site, everything went white in my left eye. It was as though someone had drawn a shade over that eye, and I could see nothing. Tears dripping down my face, I stood on the gravel bank, terrified and unsure of what to do. I was 15 years old at the time, and shy to the point of social paralysis -- I didn’t want to make anyone mad at me by backing out of the trip at the last second. When I finally went to one of the adults with my problem, I was hoping they would make the obvious decision for me, and send me back to town-- That way I wouldn’t be “wimping out,” and leaving my partner.

Unfortunately the “adults” guiding the canoe trip were far from responsible, and totally unqualified. They told me to buck up, my eye would be fine. They slapped a piece of gauze over it, gave me a Mormon blessing, and scooted me into a canoe. The adults failed in their role, and my fear of social retribution held me at their will.

We canoed in pouring rain, stopping once for lunch, and then again to make camp for the night. When we stopped the first time, I curled up on the wet rocks of the riverbank and lay there, still unable to see out of my left eye. No one approached me. I was still well enough to get back in the canoe and paddle the rest of the day until we made camp, but barely.

To be continued...