An update

I’m sure by now some people would like to see something new from me, or at least see me back in the community. That hasn’t happened yet, due to some major problems with my surgery.

I’m only putting this out there so that people know just how difficult writing is for me at the current moment. Since my brain surgery, I have been to the Emergency Room three times. Last night was the last, and by far the worst.

I am dealing with some sort of inflammatory process that will not relent and only responds to really strong steroids (dexamethasone) and opiates. I am essentially a non-functioning human being at the present moment. I want to write, I want to play with my kids and squeeze my wife. Heck, I almost want to work.

But I can’t. Further, I don’t have the energy right now to be involved in the threads on /r/asoiaf that I interest me. There are lots of good things I see that I can’t talk about these days.

46 thoughts on “An update

  1. apolotresse

    Very sorry to hear that. I am new to your blog and have find it very interesting while reading all these theories and analysis. With some I agree with others not that much but is invaluable to ASOIAF fans to have a resource like this blog. In any case, first the first: your health. Wishing you an excellent and soon recovery. Best regards.

    Reply
  2. AstroLorraine

    Good luck with the healing process! And slowly getting your life back. All in good time. I’ve only read and not commented so far, but I have to say your blog is a gem among ASOIAF speculation.

    Reply
  3. Lady Dyanna

    I may not know you personally, but I have greatly enjoyed reading through the thoughts that you have taken the time to share with all of us. It’s clearly something that you find enjoyable, and for that reason alone, I hope that you are soon able to return to it. I understand just how frustrating it can be to not be able to enjoy the things that you care about, whether it be doing things with family, or something as mundane as a favorite pass time. I hope you are now on the road to recovery and that the potholes have been patched for you on the other side of the hill you are cresting.

    Reply
  4. Hardy

    Best wishes for a smooth recovery from Germany. Thx a lot for you great essays and take all the time you need. First priority: health, second priority: family, a bit later work and hobbies. Wish you well!

    Reply
  5. Joe B

    All the best for a healthy ,speedy recovery I’m recently recovering from 2 operations this summer and feel your pain. This will make you stronger in the end, it will end,just remember that.

    Reply
  6. The Evening Squire

    Hope you and your family are in a good way despite these frustrating setbacks. Looking forward to reading your new analyses. I’m sure they will be worth the wait. All the best!

    Reply
  7. shan

    Hang in there buddy. Take your time and get healthy again. We’ll be right here waiting for your return! All the best!

    Reply
  8. Preston Jacobs

    I wish I could make you feel better with a six stories about the Winged Knight. Hang in there and get better.

    Reply
  9. Tycho Rivers

    I really hope you start seeing some positive results in your recovery. It may be a longer road than expected, but I suspect you have the strength to see it through.

    I wanted to say how much I appreciate your writing and thoughtful analysis of ASOIAF. It has helped ease the pain of the long wait between novels and has, in fact, increased my overall enjoyment of Martin’s work. I often find myself rereading passages you cite and combing the words hidden clues.

    Just get well soon. One of the worst things about serious injury or illness is not being able to do the things you love. All the best man.

    Reply
  10. aerodoe

    That procedure can be a rough recovery. It’s my sincere wish that the worst is behind you. The brain has its own schedule for things as we all know, but don’t you sometimes wish it would let you steer for a little while?

    I hope you’re back to doing the things you love surrounded by the people you love as soon as possible. I know I speak for everyone who comes here to read the hands-down best essays on aSoIaF, that 💖💖we love you,💖💖, dude! Feel better!
    😎😍😚😉😊😎

    Reply
  11. aerodoe

    There’s no headache like a CSF headache.

    Did they leave a monitoring device to check your inter-cranialpressure? A closed drain system? Do you have any changes in palate? Have your docs recommended caffeine or carbonated beverages? Don’t start using either until you get the recommendation from your main doc, but ask about it if they haven’t already recommended it.

    I sincerely hope that they find the cause and remedy it quickly. I’m sure you know that if you run a fever or vomit you must get to the ED immediately.

    Did you ever play the first Warcraft game? There was a cheat where you could type, “make it so,” which would speed-up building. I wish I could type “Make it so” and you’d be pain-free and feeling like yourself again. You’ll soon be back to 100%, dude. And no longer troubled by the trigeminal neuralgia to boot! 💕💖💫🌞💫💕💖

    Reply
    1. cantuse Post author

      Nothing yet, no monitoring device, drain, etc.

      I independently ran into the advice about caffeine and THANK GOD I did. The amount of pain I was in before caffeine was unbearably insane. The pain was so bad it would wake up at least 2-3 times a night. I would basically lie there in the dark, clutching my head and begging to fall back asleep / pass out. I think I averaged about 2 hours of sleep a night. Plus I wasn’t much better during the day.

      WITH caffeine, I’m slightly better. I manage to catch 4-5 hours of sleep at times, but I still wake up about once or twice a night. I still have those nights where I wake up from severe pain, but its manageable since I have a plan, I have something to look forward to (the testing this week), I’ve got some hope. I also have some oxycodone left which I save for the really bad episodes.

      My headache has a strong exertional/tussive component, so if I do much of anything strenous (even bending over sometimes) or if I cough (holy shit sneezing is deadly). I save the oxy for when I provoke that aspect of the headache.

      You can tell the caffeine works because sometimes I take it (I also take ibuprofen right now as well) and within 20 minutes I pass out. I tell my wife that it is my body’s response to getting relief from the pain.

      And yeah, I’m a former/current TN sufferer, and I honestly think that a CSF leak headache might just be worse. Although I think its complicated, because I’m pretty sure my headache / low pressure is compressing the Trigeminal nerve in the first place, so its basically recreating my TN. So I’ve got CSF headache on top of the original neuralgia. Good times.

      My hope is that the tests reveal a leak, my doctor already suggested an epidural blood patch as the next likely step, and I hope that I am one of the lucky quick responders.

      Reply
      1. aerodoe

        The trigeminal nerve is a bear. It goes everywhere! This area is not my bailiwick, but I hope you can ask your MD whether either of these might help or harm:

        Sometimes sleeping with your head and shoulders at 30* can alleviate some pressure from a fistula. You can buy a wedge pillow that patients with GERD use to alleviate reflux. Don’t buy one until you see if the increased angle helps. You can just stack a series of pillows to keep your head elevated to see if it helps reduce your pain. I think if you stuffed a few pillows in flannel pillowcases and stacked them they’d be less likely to slip off each other when you’re asleep. You want to create a triangle of pillows starting with one under your lower back and two under your shoulders, then 3 under your neck and head. If sleeping at a 30* angle makes the pain worse, immediately go back to your standard pillow arrangement.

        Ask your doc if abdominal compression might help and if they think you should try it. It can sometimes help by encouraging steady pressure of your CSF. The compression might make things worse so do not try it without your doc’s ok! Your doc knows your condition far better than me and everything you do to reduce your pain should be by her recommendation and knowledge!

        I hope the blood patch gives you immediate relief. It’s likely you will experience at least some relief from it. If you’re still in some pain after your first blood patch, your doc may want to repeat the process. It’s very common for patients who got some pain relief from the first blood patch to have a second one.

        [Did any of the docs who treated you in the ED check your nasal discharge for Beta-2 transferrin? It’s a protein found solely in the CSF (and I think optic nerve). I think they just shove a nasal tampon in your nose and then check it with a paper coated with a special sugar that changes its color if the transferrin is present. I’m just curious if any of the emergency doctors did that test.]

        Your positive attitude is exceptional and excellent! It’s challenging when one is suffering but your positive outlook is so very important. Keep taking them on the chin and keep fighting, dude!

        🎆💫🌟🌞🌟💫🎆

      2. cantuse Post author

        So I figured I’d let you know. I stumbled across a bit of a win with my condition about a week-and-a-half ago: a single tab of ibuprofen (200mg) somehow provides far more pain relief than oxycodone. I took that nugget to my PCP who put me on indomethacin. It works, but I have to supplement with ibuprofen for consistent results, but I’m having a few good hours each day now whereas before… not really. I’ve been tweaking things thus far until my next appointment (this tuesday), I found that taking the indomethacin after dinner works best because he helps prevent me from waking with a nasty headache at 2-3 in the morning. Granted I still wake up with a headache, but it’s at 5-6 now. I just pad with ibuprofen and I can continue sleeping. On top of everything else, I do use a little marijuana and it seems to help numb/manage what pain remains. It’s funny because I never touched thus stuff until after surgery and I’m 38. Would prefer not to use it, but whatever.

        What has been a bear is the afternoons now. Every day for the past four-five days my head pain becomes unmanageable around 2pm. Which today triggered a memory: I remembered reading about something associated with ‘second half of the day headaches’. Took me a bit to regurgitate it, but CSF leaks are the culprit. Tough part is that my recent cisternogram came back negative for any leaks. It’s frustrating because I’ve got the trigeminal neuralgia, occipital neuralgia, insane tussive/cough headache, and now this ‘afternoon’ headache. All of which can be associated with a leak (or Chiari), both of which scans say I’m negative for. I can’t help but feel like ‘csf leak’ is at least headed in the right direction.

        So, for all intents and purposes I appear to still have a long way to go.

        I do have a question for you though, if an MRI found a spot near the surgery and labeled it a susceptibility artifact, possibly hemosiderin staining measuring 4mm x 20mm, should I discuss this with my doctor? I recently found the report for my september MRI and this detail was in there although it was not discussed with me at the time.

  12. Hardy

    Thx for the update und I wish you well for the next time. I hope, you are sooner than later able to live a normal life again. Greetings from Germany, Hardy.

    Reply
  13. AeroDoe

    How did your appointment go yesterday?

    Can you describe the cisternography process to me? I’m interested in what positions they had you in when you were scanned; whether or not they put cotton in your nose after the isotope dye was injected and retained then examined the cotton; if you know what space they injected on the cisternography and on your MRI, if the radiologist remarked on any brain sagging. (It sounds awful, but that’s one of the reasons why patients with CSF leaks have terrible headaches.) Also if you’re hypotensive, if your blood pressure has been low since the MVD

    If you have had a CT-scan, do you have the report from it?

    I just want to reiterate that nothing I write here is a substitute for your medical doctor’s advice, diagnosis or treatment. Don’t delay seeing a doctor or going to the emergency department if and when you have any problems!

    Reply
    1. cantuse Post author

      Actually my blood pressure has been quite high since the MVD. Traditionally I’m around 120/65 or so, but after the MVD I was hitting 155/100-ish. I asked my PCP about it two days ago, she said that the increase in BP can be correlated to pain … and since the recent addition of the anti-inflammatories (indomethacin and ibuprofen) my blood pressure is normal.

      As for the cisternogram, I had the injection while lying face down, at the L3-4 level. Images were taken at 10m, 4 hours and 24 hours… using a variety of postures: some standing, sitting and lying down. No cotton in the nose.

      No mention of brain sagging, other than the susceptibility artifact I mentioned the MRIs all look normal. I definitely think something’s up because last night I had a minor relapse (first time I had to use the oxycodone in over a week, plus more ibuprofen than I generally want to use) … and when I have these relapses there is this shooting pain in my right thigh, deep, running behind the femur all the way to the calf. I’ve had this issue for years: it flares up and dies down, but apparently it’s somehow connected to when my head hurts more.

      Mysteries. Anyways, the good news is that I’ve been feeling up to writing and I’m hoping I can finish off a long overdue essay over the weekend.

      Reply
  14. AeroDoe

    If it were me, I would ask my doctor even though I thought I knew the answer. I want my doctor to be thinking about my case as often as possible. So, I would phone my doc and so should you. Also– don’t take the receptionist or office manager’s reluctance to let you talk to your doc to mean that your doc doesn’t want to talk to you. They’re so fastidious about gatekeeping they can be like guard dogs to patients (but not to the big pharma rep who brings the office staff lunch)! 😼👀You are an outstandingly helpful patient because you keep track of what makes it worse and what makes it better on top of having an excellent attitude. They’re both a huge help when treating and diagnosing!

    A susceptibility artifact occurs when an area has substances whose susceptibilities to a magnetic field are different. They spin differently and so distort the image. It’s not unusual to have (iron-containing) blood at a trauma site like the area they worked on during the MDV which can cause that distortion. Even the material they used after they performed the craniotomy could cause distortion on an MRI.

    I’m glad you’re getting some relief, even if some of it’s from weed. You’ve been in agonizing pain for a long time, (and that’s not counting the Trigeminal and Occipital Neuralgias)!

    I hope you are back to 100% soon, dude.

    Reply
    1. cantuse Post author

      I’m feeling pretty good today, saw the headache specialist (see another tomorrow) and I was suggested to use 75mg indomethacin tid, with a new script for propranolol to see if it helps with the exertional aspects of my pain. I still buffer the pain with ibuprofen and marijuana, but I’m tremendously more mobile/functional right now. Can’t exactly go running or lifting heavy weights but I’m going to try returning to work next week. I just need to protect the stomach from all the NSAIDs (yay for more omeprazole).

      Clearly, I still need a long-term resolution, but this is a huge difference from where I was two weeks ago.

      Reply
  15. Lady Evolett

    Hello cantuse
    at times like this we really wish for a magic wand to set things right. I’m glad you’re feeling a bit better and hope your return to work will go smoothly. Have you considered alternative medicine in your quest for a solution to the pain in particular? Operations can seriously affect the body’s natural energy flow and give rise to all sorts of side effects. I suffered from seemingly not diagnosable and apparently untreatable health problems, including a lot of back pain a while ago and in my desperation, visited a practitioner of alternative medicine. She employed “Global Diagnostics” (an electronic measurement procedure), to determine the cause of the problem. I was amazed at the results. With the same electronic device, she set my energy flows right and additionally prescribed suitable natural medication and suggested changes in diet to complement the treatment. I know it all sounds very esoteric but after four weeks, I felt so much better, was free of pain and was able to go about business as usual. Perhaps that’s something you could look into. Painkillers are fine as a temporary solution but ..

    I wish you all the best on your journey back to a healthful life. Some things do persist and need constant attention but the main thing is to keep at it and get a grip on the problem. Good luck and Gute Besserung (as we would say here in Germany).

    Reply
    1. cantuse Post author

      Just did some acupuncture yesterday. I have hopes for improvement in the long term, but I don’t know… my injury/surgery is apparently going to take a long time to heal.

      From a scientific perspective I think the major realization is that there is still a lot to learn/discover about how the brain and back work in cases of intractable pain, such as mine and perhaps yours. I went into surgery thinking that any complications would be rather easy to sort out and deal with, and now I’m convinced that even the surgeons are often working from a position of somewhat limited insight. In my case, its not fully understood why my imaging all looks fine, yet my pain is insufferable. Especially since basic NSAIDs treat the pain better than conventional opiates like oxycodone. It’s just frustrating.

      Anyways, thanks for the well wishes. I have an essay I’ve been chipping away at for months when I’m both in the mood and not in pain, so I expect to eventually have something new out ‘soonish’.

      Reply
  16. Punning Pundit

    I hope you feel well soon. The brain is such a weird, scary bit of electrified meat. With luck, yours will heal and become even better than ever.

    Reply
  17. AeroDoe

    Dude!
    I just reread my last two comments. I see I wasn’t clear about the CT-scan. The cisternogram is a CT-scan, but when I asked about the CT, I meant a high-resolution CT-scan. Those are consistently better at imaging CSF leaks.

    You’re on the East Coast, non? (I’m just guessing by the times listed your comments).

    As far as managing your pain have you tried concentrating only on your pain? I realize that the pain is your constant companion, but trying to picture the pain itself can help reduce it.

    My Hungarian great-grandmother does this old old-world thing where if you’re in pain, she asks you to picture the pain, describe it and then imagine you’re pouring a pitcher of water slowly into it. As much as it sounds like nonsense or an ineffective ritual, research has found that picturing pain really can reduce the intensity of the pain.

    It’s true we don’t know a lot about the body. Allopathic medicine is frustrating because for a lot of things, you keep treating the disorder until something works. Then you have your diagnosis. Plus, unfortunately there are MDs who still use Descartes’ model which has been disproven and replaced with better models of pain theory. But some docs think that they should be able to see something malfunctioning somewhere on an x-ray or mri to explain pain. They may tell a patient that the pain is all in their head, which is actually true! But they mean the patient is imagining it. A patient whose doc still believes in Descartes’ model should find an MD who’s up-to-date with pain models.

    I hope you have some relief soon, dude! 😸

    Reply
    1. cantuse Post author

      I’m making some progress. I discovered that simple NSAIDs provide more relief than oxycodone, for some reason.

      So for the time being I’m on about 300mg of indomethacin and scattered ibuprofen for most of my pain relief. Omeprazole to protect the stomach from the NSAIDs, depakote and propranolol for headache prophylaxis, and something else I’m probably missing.

      It’s not perfect because I still have constant head pain, but I’m far more functional than I was. I even went to work for the first time this week… the first time in 45 days. However, there are some setbacks… the evening after my return to work I vomited pretty profusely. This vomiting is not isolated; I had wanted to go back a week prior but that monday morning I vomited as well. Not sure what’s going on there.

      Reply
  18. AeroDoe

    Gotta ask, do you have a fever or chills? Can you slowly and carefully put your chin to your chest? I’m sure you know this, but if you all of a sudden can’t put chin to chest, you need to go to the emergency department as it could be serious.

    Have your docs checked to see if discontinuing the meds you took for the Trigeminal and Occipital Neuralgias could cause some of your symptoms? Discontinuing opiates can cause headaches and vomiting plus heeby-jeeby sensation on the skin and wicked leg cramping and spasm. You may not have been using those for the ON&TN, though. But even stopping the other meds (like Neurontin or Topamax) you may have used for ON & TN can cause problems. Neurontin withdrawal can be similar to benzodiazepine-withdrawal which is pretty rough. You should be able to discuss this with your doc or any pharmacist. Do you fill all of your prescriptions at one pharmacy? I don’t think that it’s a drug interaction, I am wondering what your pharmacist can add as far as the vomiting and other symptoms go. You always have a Pharm-D overseeing your medications when you’re a patient in the hospital and they are an incredible resource.

    Reply
    1. cantuse Post author

      I can put my head to my chest. There were times during the first month of recovery where it was tough/painful—e.g. a food crumb that fell to my chest was suddenly hard to look at, whereas prior to surgery it would have been a trivial effort. Anyways, I don’t really have that sort of neck stiffness/pain anymore.

      As for my prior meds, I’ll tell you them all: oxcarbamazepine, lamotrigine, gabapentin. I was on the first two prior to surgery, the gabapentin was added only after I started having the complications. The whole plan was always to taper off of the meds after the surgery (after all, the whole decompression was supposed to permanently resolve what they were only treating in palliative fashion). I stopped using all of them more-or-less about three/four weeks ago.

      That why I refer to that period as the ‘dark time’… because the only thing I was taking was depakote and oxycodone… and boy was it miserable—until I made that discovery regarding ibuprofen.

      I do get all my medications handled by a single pharmacy, and I’m only seeing three doctors now for my issues, my very dedicated PCP, a neurologist that specializes in hydrocephalus and another that is a headache specialist.

      Inasmuch as I’m not happy to be dealing with a long-term issue after the surgery, I think some things are finally coming into greater focus for me:

      1. Firstly, I recently came across a google books result that almost completely nails the entire picture of my head pain: It’s from a book called “Advanced Therapy for Headache”, chapter 25, entitled: “The Woman with a Continuous Right-Sided Headache”. The cause in her case was determined to be hemicrania continua. The reason I feel it nails my pain profile is because of the complex, multifaceted manifestation. I always describe my head pain as feeling like multiple types of headache experience simultaneously:
        1. A constant, aching/throbbing around the temple that sometimes radiates into my neck, ear, eye, top of the head.
        2. Periodic, lightning-quick zaps that shoot across the top of my head, or sometimes stab me in the ear quickly before vanishing.
        3. The monstrously terrifying headaches that wake me up at night, or that creep up on me throughout the day: the ones where I pace the room/house/whatever, mumbling, crying, contemplating suicide. These are the ones responsible for most of my ER visits since surgery, and almost got me transported to the ER again between imaging sessions for my cisternogram. I essentially consider these cluster headaches (for reasons I mention in a moment).

        These three headache ‘sub-types’ are all discussed in this excerpt from the book and completely describe my situation.

      2. Second, I found a scale for ‘cluster headache’ that some people unofficially use; called The Kip Scale. I find it to be immensely more relevant for describing my headaches because simple 1-10 numbers don’t really convey much, and more importantly the really bad headaches make all the 9s and 10s look like 7s. The Kip Scale is more useful because it refers to the behavior that the sufferer displays. And let me tell you, the worst of my ‘cluster attacks’ are verbatim in accordance with the 9 or 10 on the Kip scale. They’re so bad that if I feel I’m at risk of experiencing one I’ll do whatever it takes to avoid them (especially if I fear that I might get one in my sleep). This is why I’m responding to you so thoroughly at 2:30AM my time.

      I’ll get the chance to follow up on these ideas with my doctors soon enough, but I feel some measure of relief at the idea that there *is* an existing headache class (hemicrania continua or HC) that completely describes my condition. Granted I may have an unusual cause (surgery), but its better than feeling like an accidental frankenstein.

      Oh, and as for the vomiting/nausea… no fever or chills. Its that sort of bizarre headache vomiting where you don’t actually feel that much in the way of nausea beforehand. The doctors gave me oral dissolving zofran for the long-term, but if the nausea sneaks up on me they gave me glorious phenadoz suppositories. Can’t give you much of an intellectual picture of my headache or other condition when I get to that point. The pain of vomiting (because of the tussive/exertional component to my head pain) makes me go to that special place.

      Reply
  19. Caracal G. GhostFace

    Hello.
    I’m Italian and I discovered this blog and all your amazing essays just recently, thanks to my friend – we’re ifans, like you, of “A Song of Ice and Fire”, specifically of Stannis Baratheon (and others).
    I’m sorry to learn about your health problems, and I hope you will be able to get better in a reasonable time. 🙂 Best wishes, and congratulations for your writings!

    PS: in future, when you’ll feel capable, I’d like to discuss with you in private. 🙂 Bye!

    Reply
      1. Caracal G. GhostFace

        Wow, you were so quick in answering! I didn’t expect this!

        No problem, I’m not in a hurry, so take all the time you need to get better! 😉

  20. Arrry's fleas

    hi, i have been reading your soiaf theories and explanations and they are terrific!
    i wish you all the best with your health so that you can feel normal again and enjoy your family.
    Then we might discuss the location of BR’s cave or how to use silver harps to communicate with aliens.

    Reply
  21. three eyed goddess

    How you’ve been able to accomplish anything with such terrifying chronic pain issues is astonishing. I join those above in wishing you a ‘gute besserung’ and eagerly look forward to more of your writing.

    Reply
  22. Alayne

    Hello,
    I just came across your blog and I’m still halfway through your Mannifesto, but man, I find your essays and writing amazing. I really hope you can recover from your health problems and maybe in time find a solution to get rid of them once and for all.
    Stay strong and good luck from Italy! Buona fortuna!

    Reply
  23. Scorpion92

    Your Mannifesto is amazing and has given me a good perspective on the future book. I really hope everything works out well for you and wish and pray for you brother! Health is the most precious thing a person can possess, I am sure you are going to recover really soon!

    Reply

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