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Craniotomy comin’ down the pike – advice?

Forums General Melanoma Community Craniotomy comin’ down the pike – advice?

  • Post
    KatyWI
    Participant

    It looks like the cyberknife I had on my brain in November was successful on 3 spots and not so much on the fourth.  After three doses of Ipi, it's swelled up and "looks" like it's growing (though as we know know with ipi you can't really tell initially!).  The plan is to remove the offending brain met in a week.  I'd really like to hear from some of our craniotomy "experts" (John?  Nic?  How many have you guys had between the two of you – twelve or something!  j/k, but I know it's a lot.)  Can I have some advice?

    It looks like the cyberknife I had on my brain in November was successful on 3 spots and not so much on the fourth.  After three doses of Ipi, it's swelled up and "looks" like it's growing (though as we know know with ipi you can't really tell initially!).  The plan is to remove the offending brain met in a week.  I'd really like to hear from some of our craniotomy "experts" (John?  Nic?  How many have you guys had between the two of you – twelve or something!  j/k, but I know it's a lot.)  Can I have some advice?

    What should I bring to the hospital for "comfort"?  What should I have prepared at home?  I know the doctors will "tell" me, but how long might I *really* expect to be useless/recovering?  Anything else I should know?

    Thanks, I appreciate it.

    KatyWI

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  • Replies
      Janner
      Participant

      "Gregory" composed his story for my website where he mainly discusses biochemo.  But he does have several paragraphs about his craniotomy experience.  Check his page here, and scroll down to see "craniotomy".

      http://melanomaresources.info/gregory.html

      Best wishes,

      Janner

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      Janner
      Participant

      "Gregory" composed his story for my website where he mainly discusses biochemo.  But he does have several paragraphs about his craniotomy experience.  Check his page here, and scroll down to see "craniotomy".

      http://melanomaresources.info/gregory.html

      Best wishes,

      Janner

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      MaryBZ
      Participant

      Hi Katy,

      This is your neighbor Mary, from Little Chute.  I saw the article Gloria West wrote about you in the Post Crescent last week.  I was so praying all was well with you.  I don't know much about craniotomies but want to offer my support and encouragement to you and your husband.  If there is anything (I know everyone says this but I truly mean it.) I can do please contact me at [email protected] or 920.740.8277.  Do you have dogs/pets that need looking after?  A gift card to your favorite store or restaurant?  I'm a terrible cook otherwise I'd offer to bring you chicken soup!!!  You name it and I'm there for you!

      Keep fighting.  Through your strength you give all of us warriors hope.

       

      Mary

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      MaryBZ
      Participant

      Hi Katy,

      This is your neighbor Mary, from Little Chute.  I saw the article Gloria West wrote about you in the Post Crescent last week.  I was so praying all was well with you.  I don't know much about craniotomies but want to offer my support and encouragement to you and your husband.  If there is anything (I know everyone says this but I truly mean it.) I can do please contact me at [email protected] or 920.740.8277.  Do you have dogs/pets that need looking after?  A gift card to your favorite store or restaurant?  I'm a terrible cook otherwise I'd offer to bring you chicken soup!!!  You name it and I'm there for you!

      Keep fighting.  Through your strength you give all of us warriors hope.

       

      Mary

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      NicOz
      Participant

      Sorry! Totally missed this (been away for a few days for school holidays over here)

      Sorry to hear you're facing the prospect of a craniotomy, but I'm probably not the best person to respond- Yes, I may have had lots of experience with them (I dunno- 7 or 8 to date, I think?) but I've gotten pretty blase *blush*

      I'm in hospital for one night, and then I stay a a hotel for a couple so I can get some decent sleep. The steroids make sleep difficult, the noise from machines and nurses and patients do too… and being disturbed every couple of hours to be asked who you are, where you are, and who the Prime Minister of the country is (and what date it is!) all becomes very tedious.

      Things I think are worth mentioning are (in no particular order of importance):

      I take my own pillow and something to do while in the High Dependency Unit I go to after I wake in recovery. My phone is essential as I have people waiting for news and they like to hear from me to make sure I'm not "dodgy" and my brain is functioning ok :) So I send a bulk text to a pre-arranged 'friends list'.

      I take my iPhone and ear plugs, crossword puzzles/sudoku and my computer (and I surf online with mobile broadband). Once my family come to visit, I send them out for food from the restaurants I like (am always starving) and make sure I have snacks and lots of fluids, even though they are running saline drips. I like to get that moving as soon as possible so I can get that catheter out frist thing in the morning- loathe those things!

      *I* take my own paracetamol (though I shouldn't :P) because I don't reuire anything more/stronger than the one  pain med given in recovery, and hate being told I can't have a simple paracetamol for another 2 hours, but I can have morphine!!! (I don't want morphine or strong pain relief- I just want to take the edge the niggling bone pain (for me, it's the annoyance of that, as I wake headache free as a result of the debulking- hooray!) I'm not a fan of pain meds unless I need them…

      Post surgery, one think you aren't going to want to do is raise your intra cranial pressure- you may find it more comfortable to sleep in a raised position. Remember the pain medications and steroids can cause constipation and you do NOT want to strain due to that, so make sure you have ample stool softeners on hand.

      I also have my kitchen sorted so the things I use frequently are on a higher level so I'm not having to bend over to get things out of cupboards- sometimes by avoiding the little things, it makes a BIG difference.

      I pre-cook meals before I go in, and whack them in the freezer so I don't have to bother with cooking much… or I live on toast :P I'm not generally exhausted or tired (probably because of the steroids), I just think the emotional toll with its ups and down can leave one a bit worn out, and what better excuse to do as little as possible than after brain surgery- it sounds so impressive, doesn't it? ;-)

      Last one, I arrived at 6:30 am for admission (NEVER the night before or I get NO sleep), was on the table by 10ish, on the HDU by 2pm (?) and discharged the following day by 9am. They tend to stick to regular protocol with most (2-5 days stay) but I harangue them  to get my lines taken out so I can go for a shower and get dressed and get downstairs for my cood coffee asap, and they're quite used to me these days :)

      I don't have staples- I have sutures (my surgeon thinks staples are lazy, I think) as he tries to match everything up so I dont look lopsided- possibly because I have had a shot at him about uneven eyebrows and ears early on so he's very careful now not to give me any opportunity to complain (:P) Try not to fiddle too much with the site (I am a hypocrite- I'm forever picking and running my finger over it, but always have an antiseptic wash at hand for when it's getting itchy)

      Mostly though, I just rest at home. Sometimes reading just takes too much concentration so I'll watch dvd's and tele and mess around on the computer. Do what feels right for you. If you want to potter, then potter, but don't over oo it because it can catch up with you before you realise how much you've done.

      I have lived and learned- no longer will I get back from a surgery and wash windows or weed a garden. Sometimes sitting around a bit bored means I notice housework that hasn't been done, so now I make sure I have the place spotless before I leave, all bedding clean and fresh for my return, windown sills dusted, fingerprints off fridge (and those sort of little things)

      You WILL feel better if you get outside and go for a walk, but start small.

      Like I said- not the best person to fill you in. I can barely remember what helped me first time around, and now it's just habit to get organised so I'm wracking (what's left of) my brain to recall the little things that helped.

      (After a few days away, I can say without doubt that bending down and picking things off the floor can cause a bit of a head pound- e.g. "playing" table tennis with a 5 year old *rolls eyes* so avoid bobbing down to pick things up where possible- raised ICP will cause a throbbing headache, so try to keep everything you think you'll need within arms reach")

      Really, I never feel "useless" after a craniotomy, the problem is usually that I feel so good because my headaches have receded that I go in too hard and it hits me a couple of weeks later that I could probably have taken it a little easier. Now I force myself to take it easier easy on.

      VISITORS! Must mention, sometimes they can be the most trying aspect of a recovery. I have found that even if you tell people you're ok, but just want some spacce and peace and quiet, they will still be dropping around to assure thmselves and waking you from naps, ringing you when you really don't want to talk etc. Mostly this annoys me when I'm coming off the steroids when lack of sleep can start to catch up with me- frustrating.

      But everyone has different issues, so all I can suggest is if something is beginning to irritate you, avoid it where possible (I know that sounds *duh* but it's easy to end up wanting to pacify others and letting your own needs fall down the priority list- BUT this has only become the case for me over the past few surgeries… early on, I had no issues with that. It's merely the build-up from having 5 in a year that kind of wore me out and left me a bit tetchy with people :D)

      Best of luck, and I'm sure all will go fantastically for you!

      Nic

      xxx

      (Sorry if I've rambled, but my brain is still scrambled from 4 weeks of school holidays and a 5 year old :P)

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        KatyWI
        Participant

        Nic, really helpful just to hear the voice of "been there", especially since I share your "get on with it" attitude.  Thank you!

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        KatyWI
        Participant

        Nic, really helpful just to hear the voice of "been there", especially since I share your "get on with it" attitude.  Thank you!

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      NicOz
      Participant

      Sorry! Totally missed this (been away for a few days for school holidays over here)

      Sorry to hear you're facing the prospect of a craniotomy, but I'm probably not the best person to respond- Yes, I may have had lots of experience with them (I dunno- 7 or 8 to date, I think?) but I've gotten pretty blase *blush*

      I'm in hospital for one night, and then I stay a a hotel for a couple so I can get some decent sleep. The steroids make sleep difficult, the noise from machines and nurses and patients do too… and being disturbed every couple of hours to be asked who you are, where you are, and who the Prime Minister of the country is (and what date it is!) all becomes very tedious.

      Things I think are worth mentioning are (in no particular order of importance):

      I take my own pillow and something to do while in the High Dependency Unit I go to after I wake in recovery. My phone is essential as I have people waiting for news and they like to hear from me to make sure I'm not "dodgy" and my brain is functioning ok :) So I send a bulk text to a pre-arranged 'friends list'.

      I take my iPhone and ear plugs, crossword puzzles/sudoku and my computer (and I surf online with mobile broadband). Once my family come to visit, I send them out for food from the restaurants I like (am always starving) and make sure I have snacks and lots of fluids, even though they are running saline drips. I like to get that moving as soon as possible so I can get that catheter out frist thing in the morning- loathe those things!

      *I* take my own paracetamol (though I shouldn't :P) because I don't reuire anything more/stronger than the one  pain med given in recovery, and hate being told I can't have a simple paracetamol for another 2 hours, but I can have morphine!!! (I don't want morphine or strong pain relief- I just want to take the edge the niggling bone pain (for me, it's the annoyance of that, as I wake headache free as a result of the debulking- hooray!) I'm not a fan of pain meds unless I need them…

      Post surgery, one think you aren't going to want to do is raise your intra cranial pressure- you may find it more comfortable to sleep in a raised position. Remember the pain medications and steroids can cause constipation and you do NOT want to strain due to that, so make sure you have ample stool softeners on hand.

      I also have my kitchen sorted so the things I use frequently are on a higher level so I'm not having to bend over to get things out of cupboards- sometimes by avoiding the little things, it makes a BIG difference.

      I pre-cook meals before I go in, and whack them in the freezer so I don't have to bother with cooking much… or I live on toast :P I'm not generally exhausted or tired (probably because of the steroids), I just think the emotional toll with its ups and down can leave one a bit worn out, and what better excuse to do as little as possible than after brain surgery- it sounds so impressive, doesn't it? ;-)

      Last one, I arrived at 6:30 am for admission (NEVER the night before or I get NO sleep), was on the table by 10ish, on the HDU by 2pm (?) and discharged the following day by 9am. They tend to stick to regular protocol with most (2-5 days stay) but I harangue them  to get my lines taken out so I can go for a shower and get dressed and get downstairs for my cood coffee asap, and they're quite used to me these days :)

      I don't have staples- I have sutures (my surgeon thinks staples are lazy, I think) as he tries to match everything up so I dont look lopsided- possibly because I have had a shot at him about uneven eyebrows and ears early on so he's very careful now not to give me any opportunity to complain (:P) Try not to fiddle too much with the site (I am a hypocrite- I'm forever picking and running my finger over it, but always have an antiseptic wash at hand for when it's getting itchy)

      Mostly though, I just rest at home. Sometimes reading just takes too much concentration so I'll watch dvd's and tele and mess around on the computer. Do what feels right for you. If you want to potter, then potter, but don't over oo it because it can catch up with you before you realise how much you've done.

      I have lived and learned- no longer will I get back from a surgery and wash windows or weed a garden. Sometimes sitting around a bit bored means I notice housework that hasn't been done, so now I make sure I have the place spotless before I leave, all bedding clean and fresh for my return, windown sills dusted, fingerprints off fridge (and those sort of little things)

      You WILL feel better if you get outside and go for a walk, but start small.

      Like I said- not the best person to fill you in. I can barely remember what helped me first time around, and now it's just habit to get organised so I'm wracking (what's left of) my brain to recall the little things that helped.

      (After a few days away, I can say without doubt that bending down and picking things off the floor can cause a bit of a head pound- e.g. "playing" table tennis with a 5 year old *rolls eyes* so avoid bobbing down to pick things up where possible- raised ICP will cause a throbbing headache, so try to keep everything you think you'll need within arms reach")

      Really, I never feel "useless" after a craniotomy, the problem is usually that I feel so good because my headaches have receded that I go in too hard and it hits me a couple of weeks later that I could probably have taken it a little easier. Now I force myself to take it easier easy on.

      VISITORS! Must mention, sometimes they can be the most trying aspect of a recovery. I have found that even if you tell people you're ok, but just want some spacce and peace and quiet, they will still be dropping around to assure thmselves and waking you from naps, ringing you when you really don't want to talk etc. Mostly this annoys me when I'm coming off the steroids when lack of sleep can start to catch up with me- frustrating.

      But everyone has different issues, so all I can suggest is if something is beginning to irritate you, avoid it where possible (I know that sounds *duh* but it's easy to end up wanting to pacify others and letting your own needs fall down the priority list- BUT this has only become the case for me over the past few surgeries… early on, I had no issues with that. It's merely the build-up from having 5 in a year that kind of wore me out and left me a bit tetchy with people :D)

      Best of luck, and I'm sure all will go fantastically for you!

      Nic

      xxx

      (Sorry if I've rambled, but my brain is still scrambled from 4 weeks of school holidays and a 5 year old :P)

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      jag
      Participant

      No fish oil caplets.

      No aspirin.

      Let friends and family know that steroids can bring out the best and worst in you.

      I'm pretty sure Nic covered everything else-she is my hero.

      Good luck and God Bless.

      John

       

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      jag
      Participant

      No fish oil caplets.

      No aspirin.

      Let friends and family know that steroids can bring out the best and worst in you.

      I'm pretty sure Nic covered everything else-she is my hero.

      Good luck and God Bless.

      John

       

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      kylez
      Participant

      Katy,

      My first brain met showed up in PET scan in Sept 2010, similar timing to yours. This was after IL-2 cleared my lung mets this summer, as far as a PET scan would show at least. I was very scared/nervous — opening up my skull, operning up my brain.

      My big job was to show up on the day of surgery. And once all the waiting is done and it's time, lay down for anesthesia, relax as they count down. And wake up aftewards, surprised it was over. I spent a day recovering in the neurosurgery ICU (very nice, high nurse to patient ratio). Then a second day in the regular ICU, less fun, just wanted to get the heck out of there. Lousy food (have friends bring take-out?). Then home.

      I was not operating at full capacity at first for sure. From lack of sleep from the steroids as much as anything else. I remember one very intense dream — most intense for years and years — a day or two after I got home. Guess I needed to have my head opened up for that. Not much continuous sleep, until I started tapering off the steroids. Gradually reintroducing myself to functioning in the world. Not cognitively at 100% the first couple of weeks, feellng vulnerable and easy to snap. That passed after a few weeks. If you're working, you're probably not going to want to be at work the first few weeks, hopefully that's doable.

      One thing to look at is the post-discharge instructions. One of them for me was, no aerobic exercise for 3 months. I certainly wasn't going to try anything the first month and even the second. But I had to read the discharge notes to get that piece of information. They're worth a read.

      They followed up 5 weeks later with SRS on the tumor bed and on a second brain met that had just showed up. My next MRI will be to follow up the SRS at 3 months.

      I feel fine now. Went jogging for 3 miles this afternoon, my second jog since all this began last year.

      Kyle

      PS I've been reading Keith Richards' new autobiography Life and he talks about the craniotomy he recently underwent.

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      kylez
      Participant

      Katy,

      My first brain met showed up in PET scan in Sept 2010, similar timing to yours. This was after IL-2 cleared my lung mets this summer, as far as a PET scan would show at least. I was very scared/nervous — opening up my skull, operning up my brain.

      My big job was to show up on the day of surgery. And once all the waiting is done and it's time, lay down for anesthesia, relax as they count down. And wake up aftewards, surprised it was over. I spent a day recovering in the neurosurgery ICU (very nice, high nurse to patient ratio). Then a second day in the regular ICU, less fun, just wanted to get the heck out of there. Lousy food (have friends bring take-out?). Then home.

      I was not operating at full capacity at first for sure. From lack of sleep from the steroids as much as anything else. I remember one very intense dream — most intense for years and years — a day or two after I got home. Guess I needed to have my head opened up for that. Not much continuous sleep, until I started tapering off the steroids. Gradually reintroducing myself to functioning in the world. Not cognitively at 100% the first couple of weeks, feellng vulnerable and easy to snap. That passed after a few weeks. If you're working, you're probably not going to want to be at work the first few weeks, hopefully that's doable.

      One thing to look at is the post-discharge instructions. One of them for me was, no aerobic exercise for 3 months. I certainly wasn't going to try anything the first month and even the second. But I had to read the discharge notes to get that piece of information. They're worth a read.

      They followed up 5 weeks later with SRS on the tumor bed and on a second brain met that had just showed up. My next MRI will be to follow up the SRS at 3 months.

      I feel fine now. Went jogging for 3 miles this afternoon, my second jog since all this began last year.

      Kyle

      PS I've been reading Keith Richards' new autobiography Life and he talks about the craniotomy he recently underwent.

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