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

26th February 2012 By 4 Comments

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."

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

15th February 2012 By Leave a Comment

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.

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What the fuck is going on medically with me (NSFW)

27th December 2011 By 1 Comment

 

I try not to rant in blog posts. I’m supposed to be mature as I enter my thirties, right?

The Seaspray shawl is slowly growing. Because I’m really sick now with what we suspect is shunt overdrainage (low intracranial pressure), there are very few days when I feel like knitting, so it’s coming along more slowly than I would like. I’ll get there.

 

 

 

 

 

 

 

 

 

 

 

I’m scheduled to have ICP monitoring done in January (date uncertain; I’m not holding my breath given the unreliability of callbacks from my neurosurgeon’s secretary), and I’m going to take the Seaspray Shawl and/or the Shivanaut Scarf to the hospital with me to work on them.

I’ve been picking the brains (ha-ha…) of people I know on Facebook who have had this procedure done because I’ve never had it, and they say it is not painful (the monitor is placed under either a general or a local anesthetic; I’ve been informed it will be done under general), but when it is in for 48 hours, it gets very boring, especially in the cases where the patient isn’t allowed to move around much. So, for sure I’m taking knitting to the hospital, and my Kindle as well.

If the ward allows it, I’ll take my laptop so I can watch movies on it. With luck, they may even let me have internet. When my friend Alexa (aleha ha-shalom) was in hospital and had ICP monitoring as part of her treatment, she had internet and updated it constantly.  Whether or not Internet is allowed on the ward depends on the hospital, the ward, and what’s going on in the ward; if wireless would interfere with any equipment (such as telemetry for epilepsy), then it’s probably not allowed. It would be particularly helpful to have Internet because Google Calendar is how I keep track of how much medication I take. However, my backup plan is to get a nice journal from Paperchase.

My pre-operative appointment is this Thursday, December 29, at the ungodly hour of 0815h. Can I persuade my husband to take us to McDonalds for ten cups of coffee or tea breakfast? If we don’t get a date for the surgery within 2 weeks after that, when we’re to phone my neurosurgeon’s nurse, arrive at their homes with torches and pitchforks and a lynch mob, and start bugging her.

Or I could just kill them. With an ax. In the face.

Every day I have severe headaches within 10 minutes of going vertical. The pain is never below a 7/10 on the pain scale. I take 6-8 Gravols a day to cope with it, which knock me out for 4-6 hours per dose. Topomax doesn’t work, because these are most likely not migraines. Raising the dosage of it would be pointless. Imigran, a migraine abortive, sometimes works, but more often than not doesn”t, and just leaves my hands numb and tingly. I’m not even supposed to take it because I have asthma. My GP gave it to me because she didn’t know what else to give me.

Sometimes, wanking works. Yep. I said it. You heard me loud and clear. Thank you, Easily Aroused. Endorphins relieve pain. I’d much rather use sex for pleasure, though. I do not enjoy thinking about sex this much. I think it should be reserved for special times, for pure enjoyment. My husband bought me a copy of EA’s book, “Five”, for Christmas this year, and being able to hold the book in my hands, rather than leaning over a computer screen, is so much easier for me. It has some of my favourite stories, that are no longer available on EA’s website.* Love and cuddles, darling DH.

Bureaucratically speaking:

I understand perfectly well that I am not an emergent patient, so this means that my procedure waiting time is going to be elongated.

That doesn’t make it easier to deal with.

My initial appointment with the neurosurgeon was on 27 September 2011. He scheduled an “urgent” CT scan. We waited, and made periodic phone calls to his office to inquire about when it would happen. Meanwhile, the headaches continued as described above.

The CT scan was performed on 21 October 2011.

After many phone calls and left messages on answerphones, we didn’t get the results letter until 24 November 2011, which stated that the ICP monitoring might, take place in January, with a pre-op appointment on 29 December.

The last excuse for taking a month to read my CT scan results was that the clinic was “waiting for my medical records to be transferred from one clinic to another”. I’m too well-bred to type out what that sounds like. The kindest, most restrained thing I can say about it it with might be ass-covering, excuse-making, incompetent, paperwork-losing bullshit “foot-dragging”. Nothing of this sort, at least not delays of this caliber, happened to me in Canada. Delays – yes, of course! Patients who are sicker take precedence. That is completely logical and completely understandable. I’m not vomiting because I’m taking enough Gravol to prevent that. I don’t want to go to the ER because I’ve done that lots of times and it never comes to anything useful.

But a month between action, or at least responses to inquiries? *clucks tongue* I’ve never had that happen before.

27 September2011 – Initial consultation and shunt series x-ray. Neurosurgeon ordered “urgent” head CT.

21 October 2011 – Head CT performed. Radiologist suggested that results should be in by a week or so. Phoned for them, and they were not.

24 November 2011 – Received results letter with plans for ICP monitoring, but no date set for surgery because we needed to confirm agreement, which we did. Eventually received letter setting up pre-op appointment for:

29 December 2011 – The pre-op appointment went fine. They took blood, BP, etc. We’ll start phoning the neurosurgeon’s secretary for a surgery date at the end of next week if we don’t hear anything by then.

__ January 2012 - TBA

 *EA (in a brilliant marketing decision) decided to make a little money off his genius. He still publishes new stories, which are excellent as ever. I hope he sticks around. I’ve also recently discovered a female counterpart, who is just as high-quality of a writer. You can read her at 

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News About My Seaspray Shawl – Regularly Updated!

16th October 2011 By 5 Comments

16 October 2011: My next Etsy project for “A” will be made from Cotton Ease Seaspray yarn, and will be a shawl 5 feet square. Garter stitch (knit every row), using 6mm needles and 60 inch cable. The needle tips are interchangeable; they can be screwed onto and off of longer plastic cable, which allows for larger projects. I got the yarn from Georganne (my Yarn Lady!) at http://www.banyantreeyarns.com, and the supplies from http://www.p2tog.com, which sells not only yarn, but accessories as well.

This is a LOT of yarn...

 

 

This is the first time I’ll be using interchangeable needle tips, so I had to start a conversation with the owner, Shiela Dixon, on Etsy, for pointers. She’s fabulous!  Stay tuned for my interview with her in an upcoming post!

Hopefully, “A” will love the shawl!

17 November 2011: I managed to untangle the thing and it’s coming along nicely. I had to restart it three times.

4 December 2011: Here are some new pictures, with stitch markers made by Shiela Dixon.

 

 

 

 

 

 

 

 

 

27 December 2011: The shawl is slowly growing. Because I’m really sick now with what we suspect is shunt overdrainage (low intracranial pressure), there are very few days when I feel like knitting, so it’s coming along more slowly than I would like. I’ll get there. I’m scheduled to have ICP monitoring done in January, and I’m going to take this to the hospital with me to work on it. I’ve been picking the brains (ha-ha…) of people I know on Facebook who have had this procedure done because I’ve never had it, and they say it is not painful (the monitor is placed under a general anesthetic), but when it is in for 48 hours, it gets very boring, especially in the cases where the patient isn’t allowed to move around much. So, for sure I’m taking knitting to the hospital, and my Kindle as well. If the ward allows it, I’ll take my laptop so I can watch movies on it. With luck, they may even let me have internet. When my friend Alexa (aleha ha-shalom) was in hospital and had ICP monitoring as part of her treatment, she had internet and updated it constantly.  Whether or not Internet is allowed on the ward depends on the hospital, the ward, and what’s going on in the ward; if wireless would interfere with any equipment (such as telemetry for epilepsy), then it’s probably not allowed. It would be particularly helpful to have Internet because Google Calendar is how I keep track of how much medication I take. However, my backup plan is to get a nice journal from Paperchase.

My pre-operative appointment is this Thursday, December 29, at the ungodly hour of 0815h. Can I persuade my husband to take us to McDonalds for ten cups of coffee or tea breakfast? If we don’t get a date for the surgery within 2 weeks after that, when we’re to phone my neurosurgeon’s nurse, arrive at their homes with torches and pitchforks and a lynch mob, and start bugging her.

18 January 2012: We have heard nothing from the neurosurgeon. Today while knitting the shawl, I’m reviewing simple algebraic equations and watching a video about them on Khan Academy.

10 February 2012: Posts tend to cross over, so here’s the latest: I have a date for my surgery (17 February), and I took a picture of the Seaspray Shawl on 7 February.

It's getting longer!

Would anyone be interested in buying a copy of this shawl from my Etsy shop? I’ll gladly make another once this one (a custom order) is finished. Lion Brand Cotton Ease yarn is so pleasant to work with and comes in 22 colours!

15 February 2012: The replacement cables have arrived!

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