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
