June is Hydrocephalus Awareness Month

This is what it looks like to have hydrocephalus or chronic migraine.

Just because we are “good” one day does not mean we are “good” the next… and just because we had surgery we are not “fixed”. Shunting is a management system for us. It helps and for a lot of people it works wonders for years but other times they fail, and clog and get infected some times all of the above and some times finding the proper balance of fluid flow is next to impossible leaving some with chronic pain and other problems.

Some people with hydrocephalus need very few shunt revisions (surgeries) in their lifetime, whilst others require more frequent revisions, or adjustment of settings on the programmable types of shunt.

Hubby and I are convinced that my repeated revisions (completely justified and necessary at the time) were partly responsible for my severe form of migraine today. Scarring left from the surgeries, plus congenital brain damage, plus a lower set point (threshhold) for migraine triggers to begin with.

Example: Practically anyone, given the right set of triggers or conditions, can be made to have tonic-clonic (grand mal) seizures: the most recognizable form of epilepsy. But not everyone has epilepsy because their brains can tolerate the stimuli that gets tossed at it without the neurons going haywire. In an epileptic person, the brain gets triggered much more easily and frequently (and sometimes we don’t know what the trigger is; it can take a long time to weed anything out).

Similarly, migraine affects millions of people worldwide, but like epilepsy, it has varying degrees of both its severity and what it will take to set a migraine off. For most people, their triggers can either be identified and avoided, and/or medicated easily. For others, like me, medicating successfully has taken a much longer time.

In my case, there are almost no triggers we can clearly identify. The ones we have are Camembert cheese (so I haven’t eaten it since 2000), and barometric weather changes (good luck avoiding that trigger!). Medicating by trial and error since this all began in 2003, has been a roller coaster and an exercise in developing patience. (In the event you run out of patience, apply cats, dogs, chocolate, and a loved one’s cuddles.)

So, in a rather roundabout way, this is my story in connection with Hydrocephalus Awareness.

Thanks for reading!

More on Inspiration Porn

There are no ugly questions except those clothed in condescension.

~John Steinbeck

I came across this article today about inspiration porn. I’ve written about it before.

The author, Dana S. Dunn, is currently Professor of Psychology and Director of the Learning in Common (LinC) Curriculum at Moravian College, Pennsylvania. One of his former students has muscular dystrophy,  and has experienced the well-meaning but clueless interactions with other people that leave many of us with disabilities feeling like we’re being objectified, to somehow edify other people by performing the daily, mundane tasks that everyone does.

My former student isn’t the only disabled person who gets comments like these. Lots of people with disabilities get them all the time. Is there a problem? I think so. On the one hand, these casual observers are well-intentioned and just trying to be nice. On the other hand, however, they are treating disability as something extraordinary, like something that must be overcome each and every day (“You must be a hero in order to deal with that all the time!”). Of course, this sort of treatment is also condescending.

What many members of the general public fail to realize is that people’s disabilities are a fact of their lives, personal qualities, and very much a part of who they are. In other words, disability is familiar and part of their identities—its presence doesn’t make them particularly heroic, just as it doesn’t mean that their lives are a constant struggle, either. Disabled persons tend to focus on their disabilities only when they encounter social or environmental barriers, like overly curious onlookers or inaccessible buildings—both of which impede their progress.

Why yes, Mr Drury, I will gladly edify you as I buy weekly groceries.

What I like best about doing my day-to-day activities is that few people notice me, and even better, in the local Costa coffee shop, the baristas don’t treat me any differently from other customers, except to always carry my tray for me to a table (because mobility scooters and a tray holding a hot beverage is a recipe for disaster!). At home, we use travel mugs.

In fact, as I type this, I am considering a second cup of coffee – with a lid on it.

Myth and Reality in “House M.D.”

Everybody lies…even the producers of the hit series House MD.

Dr Gregory House, like his namesake, Sherlock Holmes, is “addicted” to Vicodin. But not without cause: he has legitimate severe, chronic pain in his leg from an infarction that has left him permanently lame. They do not differentiate, in this series, between “addiction” (they love the idea) and legitimate dependence (they eschew it at all costs, even though it is the correct term).

According to author Andrew Holtz in his book “The Medical Science of House M.D.”, The series went from good, in addressing the reality of his pain, to not differentiating between medical need of opiates/pain relief, appropriateness of therapy (i.e. popping Vicodin that never seemed to work), and downright dismissing his pain altogether and labelling him an addict (ditch the Vicodin altogether and go into rehab).

What about the actual pain in his leg? It’s all in his head, right?

WRONG!

This is a second book on the series, by the same author. I wonder if it is as good? Reviews say it only addresses seasons 1-6.

 

Here’s what Wikipedia has to say about poor, weak Vicodin:

Proposed US Ban on Vicodin

On June 30, 2009, a U.S. Food and Drug Administration (FDA) advisory panel voted by a narrow margin to advise the FDA to remove Vicodin and another painkiller Percocet from the market because of “a high likelihood of overdose from prescription narcotics and acetaminophen products”. The panel cited concerns of liver damage from their acetaminophen component, which is also the main ingredient in commonly used nonprescription drugs such as Tylenol. Each year, acetaminophen overdose is linked to about 400 deaths and 42,000 hospitalizations.

In January 2011, the U.S. Food and Drug Administration asked manufacturers of prescription combination products that contain acetaminophen to limit the amount of acetaminophen to no more than 325 milligrams (mg) in each tablet or capsule. Manufacturers will have three years to limit the amount of acetaminophen in their prescription drug products to 325 mg per dosage unit. The FDA also is requiring manufacturers to update labels of all prescription combination acetaminophen products to warn of the potential risk for severe liver injury.

Pharmacodynamics

The half-life of hydrocodone is approximately 3.8 hrs. Paracetamol, the other component, has a varying half-life of between 1 and 4 hours.

So, the main problem:

The drug House takes wears off too often and too quickly for the severe chronic pain he’s got (infarction and muscle death), He would be more appropriately treated with a nerve block or a slow-release form of morphine or fentanyl. But the show’s creators and producers were more concerned with the show than they were with medical facts and the Hippocratic Oath.

 

Medical Update: June 2012

A little about my medical situation…

My doctor (GP) OKed me coming off morphine (last dose was yesterday, 19 June) because we both feel they were making my headaches (medication-resistant migraines) much worse. The headaches have gotten more frequent, not unexpectedly, and much more severe since coming off morphine.

Yesterday, I had three separate migraines in one day.

Three. 

Then I couldn’t sleep for most of the night until I knocked myself out with Tramadol, Paracetamol and Gravol. 

…when a regular facepalm just doesn’t cut it.

I’ve started a new migraine med (one that I have been on before with my previous neurologist, and that worked well) – Dosulepin. I see the new neurologist on June 26, and we figured since it takes at least a month to start working (same family as amitriptyline, and he’d likely want me back on it), we’d get a start on it.

I have also recently been diagnosed with polycystic ovaries (PCOS), which we’re treating and trying to get my reproductive cycle back on track. PCOS hormone treatment is proceeding on schedule, so we’re just waiting to see if I get a period in a few days, and then I go on Metformin. (“Bleed, dammit!”)

Here’s the pain scale I use; I’m rarely below a 7 these days.

Article: “How Doctors Die” – Thoughts on End-of-Life Care

I came across this article about end of life care…from the perspective of a doctor.

This could so easily become a rallying cry against doctors and “the medical establishment”. But I’ll try not to let it. I’m not going to give you platitudes about “dying with dignity” because I’m not certain there is such a thing.

Pain control isn’t perfect. You seem to have few choices:

-you’re unconscious from medication,

-you’re more lucid, but in agony,

-or you’re somewhere in between and unable to be awake enough to enjoy the useful and productive time you have with your friends and family even though your pain may, for the moment or a few hours, be under control (Hey, I can think straight! How much can I get done before this wears off! Should I work or play?)

You start measuring time by “when can I have my next dose of painkiller?”

The excerpt from this article speaks for itself:

Almost all medical professionals have seen what we call “futile care” being performed on people. That’s when doctors bring the cutting edge of technology to bear on a grievously ill person near the end of life. The patient will get cut open, perforated with tubes, hooked up to machines, and assaulted with drugs. All of this occurs in the Intensive Care Unit at a cost of tens of thousands of dollars a day. What it buys is misery we would not inflict on a terrorist. I cannot count the number of times fellow physicians have told me, in words that vary only slightly, “Promise me if you find me like this that you’ll kill me.” They mean it. Some medical personnel wear medallions stamped “NO CODE” to tell physicians not to perform CPR on them. I have even seen it as a tattoo.

Even when the right preparations have been made, the system can still swallow people up. One of my patients was a man named Jack, a 78-year-old who had been ill for years and undergone about 15 major surgical procedures. He explained to me that he never, under any circumstances, wanted to be placed on life support machines again. One Saturday, however, Jack suffered a massive stroke and got admitted to the emergency room unconscious, without his wife. Doctors did everything possible to resuscitate him and put him on life support in the ICU. This was Jack’s worst nightmare. When I arrived at the hospital and took over Jack’s care, I spoke to his wife and to hospital staff, bringing in my office notes with his care preferences. Then I turned off the life support machines and sat with him. He died two hours later.

One of the most basic human rights is, all too often, staved off by medicine: the right to die. Hopefully this article makes you think about some of the issues you may face if you’re ever diagnosed with a terminal illness.

New Diagnosis: Costochondritis

I’ve just been diagnosed with (tentatively) costocchondritis (inflammation of the cartilage in the ribcage). I’ve had bad rib pain for months and finally got up the courage to mention it to the doctor yesterday. When you have as many issues as I do, rib pain always seemed to get pushed to the back burner, but it’s been worse lately and I finally had enough.

I’ve already been taking ibuprofen for my leg inflammation, and it’s the same treatment for the ribs, plus heat packs (which I already use).

So it’s a little upsetting because there’s not much else we can do.

GP wil be doing a referral to a neurologist, after she reviews the notes from the last guy I saw in Glasgow. She needs to see all the meds we tried (in case I can;t remember one), and then we can make a plan what to try next.

My body’s just always falling apart! LOL

On “Transcending Pain”

I’m a chronic pain patient on morphine. (Note: As of 2013, I am no longer on opiates, but every day I wish I could have something, just a little, to take the edge off.) 

It amuses me when healthy people ascribe romantic ideas or evaluations of the experience of pain, especially chronic or severe pain the likes of which most of them have not experienced.

More than once, I’ve been told by different healthy people how inspiring I am, or how I rise above the pain to knit, study or just be a functional adult in my normal life. I’m not the first, nor the last, disabled woman to have this revelation (but this is an excellent post by the Disabled Feminist that reinforces my thesis).

On some level, I realize that most of them only mean well, but still, those types of people make me want to crush their larynxes with my boot.

They don’t usually see me, or other pain patients (such as my husband and sister who both have fibromyalgia), on the really bad days, because on those days, we’re not well enough to grace them with our magical, inspiring presence.

I’m betting that the screaming, throwing up and moaning from pain is sooo not in their idea of the romantic.

If, by the end of reading this post, you still think I and other disabled people are inspiring, please check out another post of mine, and a different post by the same blogger, Disabled Feminist.

But I hope, instead, that a lightning bolt of reality has benevolently struck you.

 

ICP Monitoring: What Happened, the Results, and What We are Doing Next

I got home from the hospital on 22 February. This blog post is intended to explain what happened, the results (and what they mean), and what we are going to do next in dealing with my severe chronic headaches.

I have to assume that my readers do not know all the ins and outs of neurosurgical treatments and diagnostic tests, so I’ve tried to write this post in such a way as to be as clear as possible. When you are a neuro patient as long as I have been (my entire life), you get used to talking in different ways depending on who you’re talking with. I’m used to talking most frequently to doctors, so if what I say confuses you or is too technical, let me know and I can try and boil it down.

As always, please write to me if you have any more questions, or leave a comment at the bottom of the post.

The Recap:

I had elective intracranial pressure monitoring done from 17 February-22 February 2012, to rule out whether or not my shunt or hydrocephalus is responsible for my chronic severe daily headaches. We knew going into it that there was a possibility of the hydrocephalus or shunt being completely uninvolved in the headaches, and this test was the way to find that out.

In my case, there are two outcomes to this procedure:

1) It shows that there is something abnormal about my ICP, which could account for the headaches, in whole or in part.

2) It shows that my ICP is within normal range, and is therefore not a factor in what’s causing the headaches.

What we found out is the second point: my ICP is within normal ranges. 

ICP monitoring is not a treatment; it is a diagnostic test only. My headache levels and frequency remained the same in hospital as they have been for the past few years. We (DH and my other family members who are intimately familiar with my medical history) are not surprised by this because we were aware that ICP monitoring is not a treatment in the sense that it, by itself, would have any effect whatsoever on the headaches. So, at the end of it, we well expected me to be feeling pretty much the same (shitty) as I did before having the monitoring done.

 

What Happened:

I was hooked up to it for 48 hours initially (which is the standard amount of time for continuous monitoring), and when my neurosurgeon (“consultant” in UK English, and “attending” in American English) came in on Monday morning (21 February), he wanted me to have the monitor on for an additional 24 hours. At the time he said this, he didn’t explain things further, and I was happy to stay in for another day (though not ecstatic about it) because I was able to get him to explain why he wanted to extend my length of monitoring. He wanted more data: in a sense, he wanted a bigger sample size of the way my ICP behaves over time.

If you know anything about statistics like I do, having a larger sample size of the data you want to collect is, most of the time, a good thing. It means that the neurosurgeon has more information to work with. So, I could well appreciate the need for more data. My case is complicated, and the more information we have, the better the chances of understanding what is going on.

The Results: 

My ICP is in the range of normal. This means that it is not causing my headaches. They also checked everything else:

-I’m not overdraining, which means that
-The shunt is still tied off, as it should be
-My ventricles are a decent, normal size, and are not appearing to be slit ventricles
-There is no evidence that my hydrocephalus is “active”; that means that the ventricles are not enlarged
-There are no leaks of cerebrospinal fluid (CSF)

I asked the neurosurgeon registrar to explain how exactly they know that it’s not my ICP that is responsible.

If I had either low or high ICP, they would have seen a longer run in the data of numbers being closer together, during certain activities like sitting up, lying flat, coughing, straining, etc. For example, my pressure, if it were low, could remain at -1 for 6-8 hours. It didn;t show that. My data shows a mix of different numbers all over the map, but nothing that is particularly high enough or low enough, for a long enough time, to make them pin down the ICP as a cause.

What We are Doing Next:

The neurosurgeon has referred me to:

-Neurology unit, where presumably we will continue to investigate what kind of headaches these may be. I have also been referred to

-The pain unit.

For now, I’m under orders to stay on my current medications, which include sustained release morphine pills (maintenance), Tramadol and Gravol, with Diazepam for sleep (breakthrough medications).    However, since the hospital doesn’t dispense Tramadol, they gave me Oramorph for breakthrough pain while I was there.

Nurse: “Would you like some Oramorph?”

Me: “Hell yes!!!”

It worked much, much better than Tramadol for breakthrough pain, and so when I see my GP on Tuesday, we’ll be asking her to put me on Oramorph oral solution, instead of the Tramadol. For some reason, hospital staff are much less stingy than GPs with regard to prescribing opiates that have a chance of working.

...Or else it gets the hose again.

It tastes like crap, but Oramorph worked very well.

 

The State of the Union is that my headaches are exactly the same as they were before ICP monitoring. This is an expected scenario because by itself, monitoring doesn’t treat anything (unless it’s the type of patient who requires the CSF to be drained, and then they put in a special type of monitor which provides for draining off the excess CSF at the same time as monitoring the pressure). This is the type of ICP monitoring that my friend, Alexa, had.

The type of monitor I was on was the least-invasive type, did not require CSF to be drained, and they didn’t need to shave off any of my hair (for which I am grateful).

The reason we’re just in a waiting pattern right now is because a GP is not qualified to try out any migraine or other headache medications on me. That’s what neurologists are for. So, when I see the GP on Tuesday, they will not be permitted to change any of my medications except to replace my Tramadol with Oramorph.

"I'm sorry, but we are off the Bullshit Painkillers That Aren't Going to Work menu, now."

Shit My Neurosurgeons Have Said: “Choke Yourself!” (NSFW)

I’ll be going into hospital this Friday to have Intracranial Pressure monitoring done. It’s scaring me, so I went on Facebook looking for hugs. Or giggles.

In a Facebook group for low ICP and CSF Leaks, someone started a humour thread:

“The things consultants said that made you laugh/speechless?”

I’ve got a few of those!

My Canadian neurosurgeon did a shunt tap and measured my intracranial pressure with a needle and manometer in 2007: “I don’t think I’ve ever heard you say, FUCK! before.”

Another one from my Canadian neurosurgeon, on asking me to perform a Valsalva maneuver: “Choke yourself!”

(Shades of Full Metal Jacket, anyone? NSFW.)

I looked at him like he was nuts, and asked if he was sure he wanted me to do that. He did indeed, but he actually meant, “press down on the jugular/carotid on both sides”: it temporarily relieves my symptoms, which suggests overdrainage.

Some really dumb people have asked if I’m an autoerotic asphyxiator, and of course I’m not. I don’t touch my windpipe, impede my breathing, or in any way derive sexual pleasure from this. It’s a simple Valsalva maneuver – that’s all.  People have sick minds.

Commander Data to the Bridge, Please!

A public service announcement:

Beware, peeps: my severe pain, lack of good sleep, and meds (morphine, Tramadol, etc) can make me very blunt at times.

I’ve been kicked out of closed groups on FB and message boards even when I’ve explained the medicine, neurosurgery and neurology behind it many, many times. Like I said to a spoonie Facebook friend – some people just. Don’t. Get it. – especially if they have never had to deal with chronic pain. 

1) I have a big problem when people are being willfully, continually ignorant or stupid – about anything – and I have no problem telling them straight to their faces.

2) I can’t interpret sarcasm AT ALL, either. On the other hand, I have a quirky sense of humour and love giving hugs and cuddles, so hopefully that balances things out.

“I just…love scanning for life-forms!”

My DH calls me “Data”, after the Star Trek Next Generation character, because:

3) I really have a tough time interpreting emotions right now. 

I think a lot of the reason behind it is that sarcasm simply cannot be adequately communicated in a print-only format. So much of human emotion is conveyed by facial expression and tone of voice – and that’s something Facebook cannot provide.

4) I tend to ask people directly if they’re being sarcastic – it’s the only way I can know for sure.

We now return you to your regularly scheduled programming.

Sidenote: I’m composing lyrics based on the “Life Forms” song, set to the music of Andrew Lloyd Webber’s Music of the Night from The Phantom of the Opera

And I just have to include this. This post would not be complete without it.

Update!

I’ve been off all narcotics since January 2013, which has made things a little easier. However, I still experience daily severe migraines, so I am still Commander Data.