ANA Discussion Forum
General Category => AN Issues => Topic started by: Lupy on April 22, 2009, 06:17:24 pm
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Hey guys, have just been chatting to a few different people about my up coming surgery (no date yet) and have found out you end up with rather large, nasty bruises on your arms from the drips they put in. I was quite happy to find out about this beforehand so I didn't freak out when it happened. Are there any other things that people wish they had known about prior to surgery? Things that the doctors might neglect to mention or think are 'not a big deal'?
Cheerios,
Lupy
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Hi Lupy!
I still have some visible marks on my arms from the IVs in January (the arterial line and the regular IVs) but I have awful veins and bruise easy!
I really wasn't prepared for the double vision but it was only a nuisance for a few days. My eyes didn't track very quickly and that was a surprise to me. I also wasn't prepared for my neck to be as swollen and sore, but again, minor annoyance and short-lived. Thanks to this group and lots of good reading materials from ANA, I was very prepared for my surgery.
I had even packed well, thanks to lots of great advice from folks here who had gone before!
Good luck and positive thoughts as you wait for your surgery date!!!
Kathy
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IV bruises, a catheter when you are first in the ICU, the importance of pillows, how wonderful it can feel to brush your teeth and clean your face, and how difficult it was to find a comfortable position to sleep in. That one really killed me. Of course, it would have been good to be warned about nerve pain but I think that's a rather rare complication.
Best
Marci
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Because I wasnt up anf walkinh right away, evey 8 hrs I got a needle in the stomach to prevent clots...I felt like a pin cusion and was left with bruises...but i didnt hurt
JO ;D
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Ahh catheter, now thats something I was unaware of! Do you think the ANA would send reading materials to Australia?
Lupy
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Hi Lupy,
Let me add a few things:
Cathetor for 3days after surgery
Crackers, crackers and crackers...when you take all of the pills every 4 hours, it helps to eat something little. The hospital had unsalted saltines dry...
saltines, cheezits, animal crackers really helped me.
Pillows under back and sides to help be comfortable and sleep.
Take the meds, you want to be proactive before the pain gets worse.
Move your body and not your head, use legs to bend.
If I think of more I will write later.
Good luck and will keep you in thoughts and prayers.
Bell
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If you are a regular coffee drinker, make sure you continue with a source of caffeine. The coffee was terrible in the ICU so I didn't drink it. On day 2 post surgery I got a withdrawal headache. No problem except it caused them to wonder if I wasn't leaking somewhere. Luckily they let me cure the "brain leak" with a diet pepsi instead of the more medical solutions they were contemplating.
If you wear glasses take a small screwdriver to remove one of the legs/arms so you can wear your glasses with the Princess Leia bandage you will have. While being semi-drugged, adjusting to some new sensory inputs is disorienting...doing so with completely fuzzy vision makes things waaaay worse.
Tim B
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Thanks these are all great replies. I think the crackers suggestion is good as pills tend to upset my tummy! But, are you able to eat straight away after surgery? And do you wake up with any tubes still in your face/nose/throat?
Lupy
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Lupy
I had no tubes when I woke up and ate something like chocolate cream of wheat 6 hours after surgery. The nurses in ICU fed it to me I then slept until the next morning and ate bread and jelly for breakfast. ( I also had 2 cups of very good coffee with breakfast) I think this is something that is very different though from person to person and OP to OP.
Dan in Germany
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Lupy,
When I woke up, no tubes from the head area at all. A catheter, IV line, some type of monitor on left index finger, and a bunch of electrodes taped to my chest. In thinking about it, if I had known about the electrodes, I would have shaved my chest prior to surgery. I'm a bit furry and everytime I shifted position there was a not really very pleasant tugging of my torsal hair. I'm thinking that particular problem won't apply to you though...
..take care.. tim b
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Lupy -
I had no bruises, but like Kathy M found the double vision unsettling. I didn't realize it was a possibility.
I also wasn't prepared for the feeling when I woke up post op. I don't want to frighten you, but some have likened the feeling to being hit by a Mack truck and I'd have to agree. My neurotologist tried to prepare me for this feeling but it's kind of something you have to experience yourself to appreciate ::) I'd never had a major surgery before this, so I really had nothing to compare it to.
As far as the catheter goes, I asked my doc to make sure it was inserted after I was put to sleep and he agreed. Taking it out when you're awake is no big deal.
I'm amazed that Dan was eating so soon - and real food, too. I was nauseaus for many days post op. Couldn't eat at all.
But like he said - everyone is different.
Good luck with your surgery,
Jan
Oh, I don't know if the ANA will send literature to Australia. But it doesn't hurt to ask. You can contact them through the main page of this website.
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There shouldn't be any face or down the nose ones. There can be an occ time someone may wake up with the throat tube in but is not the ususal way and you can ask a dr when do the pre op workup. I have never woke up with it with my more than one NF2 AN surgeries. There will be an oxygen cannula in your nose and may stay the whole time while in ICU. You will have the tighter stockings on plus some some vinyl type ones wrapped around the leg which blow up and then down to keep the blood flowing well in the legs so no blood clots. Those stayed on till we were up walking on a regular basis. Some people have them on the whole time. Each hospital and dr has their various protocols. I always had some episodes of having some nausea for a time. Then work up from clear liquids to food. I usually had almost no appetite while in the hospital and that varies with people. Then not much at home and only certain foods tasted ok as the taste may be off for a time. The big tight dressing is annoying. The Univ of Iowa changes that every AM which felt very good. That also varies how long you wear it. My catheter always stayed in till they saw you were able to get up and walk without difficulty which is my case was right away. That really varies with everyone too.
It helps to know ahead what to expect. Cheryl R
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Cheryl's post reminded me... be prepared to do the "neurological functioning exam" about 12 gazillion times. It basically involves the doctor looking at your eyes with a flashlight, having you squeeze his/her fingers with both hands, scrunch your face up, and push against his hands with your feet.
While it is possible that I only had to do that for the doctors actually involved in my case, since there were about 12 of them in the room apparently, I'm fairly certain that a whole bunch of folks not actually involved in my case asked me to do it. I think random new doctors (they all seemed to look REALLY young) would walk by the door, see this huge bandage on my head and come in to do the "neurological functioning exam". It was like...ooh, ooh, training aid, training aid time or something.
It was actually amusing after a bit... I started imitating the Great Carnak.. wait, let me guess.. ou want me to squeeze your fingers and scrunch up my face..
..take care.. tim b
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Plus the nurses do it all night too! Once you are in a regular room there is usually the every 4 hrs vitals too even in the middle of the night. Plus some meds thru the IV at any hour. Home was so nice to get back to. I could never sleep well though for a couple weeks every time afterwards and we have had the fun pillow discussion of trying all kinds to feel right.
Cheryl R
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Tim:
I didn't see my doctor very often during my hospital stay (just under 5 days) because he had to go out of town for a seminar (he was a speaker) two days after my surgery, although his assistant (a neurosurgeon) did stop by once or twice and eventually authorized my discharge after a quick neurological exam. However, as Cheryl mentioned, the nurses (who, to my then-63-year-old eyes, all looked like they should still be high school) must have had me perform the "follow my finger", flashlight-in-the-eyes, "smile" and "do you know where you are?" routine about every 3 hours (it seemed). I also had my blood sugar checked at least twice per day, even though it was fine (I don't have diabetes) and all of my vital signs were perfectly normal, even excellent, (BP 128/78, Pulse rate 70) considering my age and the traumatic operation I had just endured. For anyone getting prepared for AN removal surgery, you should know that the seemingly constant neurological function checks and so on, especially when you're in the ICU, are somewhat annoying - but necessary. I survived - and so does everyone else. In a perverse way, it's almost a motivation to get ambulatory and qualified for discharge. Maybe that's the idea. Hmmmmm. :)
Jim
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Lupy, I can't imagine that the ANA office wouldn't send info to Australia, but if for some reason they don't, send me a PM with your address and I'll go over and pick up the info for you and send it. I live 3-4 minutes (literally) from the ANA office...will be no trouble at all.
As others have noted, AN surgery recovery is different for all, but it's good to know in general what to expect - was very helpful as I was going through it to know that so many others had been through the same things and came through it all.
Cindy
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Jim, actually the continual stream of finger and eyeball obsessed folks helped the time pass quicker. I wasn't in the hospital very long. Op on Tuesday, home in time for Saturday morning cartoons. But during the recovery phase I really didn't feel much like 'doing' anything like reading or TV and they weren't giving me good enough drugs to keep me knocked out all the time.
I had visitors but most of them came after work so the frequent neuro checks were somewhat entertaining...especially after my head cleared enough that my often odd sense of humor cranked back up to full effect. Me bored and an endless stream of serious young folks trying to appear professional..not necessarily a good combination for them.
Lupy, also, that first car ride was a tiny bit torturous for me. My vestibular system was very sensitive and the bumping, swaying of the car was not that much fun. I took the nausea meds, reclined the seat, and put a towel over my eyes.. of course later, I got to really wondering what a roller coaster ride would be like in this state of hypersensitive vestibularity (I love roller coasters).
..take care.. tim b
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One thing they don't tell you... you're going to have a catheter. This was my first surgery other than having my tonsils out when I was 6 years old.... so it was something different...
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Thanks guys this is great! Well, kind of, it still doens't sound very nice but I would reather know than be surprised. It sounds like everyones experience is quite unique (i.e. blurry vision, tubes, appetite, coffee (!)) but one more question - did every one feel like they had 'been hit by a mac truck' afterwards? I have spoken to a few people who said when they work up they were so whacked out on drugs they really didn't feel much pain or discomfort.
I will email about ANA literature and see what they say...
Thanks again guys you rock!
:D
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Lupy,
For me ithere wasn't much pain except that caffiene withdrawal headache. I'm sure that was a matter of them doing good drug management to control it.
It was more like a "I'm sure glad I don't have to be anywhere for a few days, I can just lie here and take it easy." Imagine the worst week you've had at work, Friday evening comes around and you kind of collapse on your sofa and feel like it would take dynamite to get you out... that's kind of how I felt for the most part.
I haven't been hit by a Mack truck, but I did have a head on collision with a car while riding my bicycle once... I felt much worse after that wreck than I did after the AN surgery..at least pain and discomfort-wise.
But as you said, everyone has a unique experience.
Maybe I have an overactive imagination...but how I thought it would be was much worse that it actually was.
..take care... tim b
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I'm with Tim, I didn't have pain (except for the caffeine w/drawal headache), so much as shear exhaustion...and nausea, for me. Even after being released from the hospital, it was still several days before I could both wash my face AND brush my teeth at the same time! Was amazing how weak I was...but after about 2 weeks, I felt dramatically better!
Do let me know about the ANA literature. Take care,
Cindy
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but one more question - did every one feel like they had 'been hit by a mac truck' afterwards? I have spoken to a few people who said when they work up they were so whacked out on drugs they really didn't feel much pain or discomfort.
I didn't feel at all like I'd been "hit by a mac truck" in the recovery room. I'm sure there was an element of "survivor euphoria," but even with that factor aside, I didn't feel bad or uncomfortable at all. I was among the fortunate ones who didn't experience any nausea, double vision, headaches, etc. in ICU. My only issue was extreme thirst ... and that was resolved by a constant supply of ice chips and the water-soaked sponge the nurses gave me to suck on. I had been dreading the catheter removal; I asked the nurses when that was going to happen, and they said it had already been removed ... so it was a non-issue. I certainly realize that everyone's response/reaction is different, but I definitely did not have a "mac truck" experience at any point during my hospital stay.
Catherine (JerseyGirl 2)
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I had a very hard time coming out of the anesethic( spelling?) so my body felt like a lead weight. I had no pain whatsoever which I'm grateful for. The head gear was uncomfortable. But once they got me up walkin, there was no looking back. My head is still sore from being in a vise but getting better as each day goes by.
JO ;D
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Hi,
No mack truck experience here, but I definitely felt worse the longer I was awake. I had pain in my neck but not my head. I had no nausea. They started me on a liquid diet (which I ate even though it was horrible) and progressed to really bad solid food. I was operated on Tuesday, home Thursday afternoon. BTW, the catheter was a surprise to me (they did it while I was under) and there was no problem taking it out. It was not a big deal at all. They kept asking me who the president was and I kept making jokes. I also told them that they should ask my neighbor his questions quietly because it was easy for me to cheat since by the time they got to me I'd already heard the answers!
Marci
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One of the first questions they asked me, who was prime minister...I almost answered Obama as I follow US poliitics more than the Canadian. But I caught myself and answered "Haper". I never had a liquid diet. Went straight to solids...and by george, the hospital food was good, just not enough of it...
JO ;D
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I didn't feel like the mac truck hit me either. I was just really tired, had all the pain meds I wanted, but never had much pain, no nausea at all, and went right to solid food as soon as I wanted it. The IVs were the worst for me because of these stinkin' tiny rolling veins!! And...I got frustrated with the nurses in ICU not being very attentive to my calls to have help to the restroom. If I had known it would take them forever to get to my room, I would have begged to have the catheter left in just a while longer!!! I was too teetery to get up completely unassisted (Not really dizzy, just wobbly from the anesthesia and meds). Like Marci, my neck was the biggest source of pain for me but that just takes time - they had to cut through muscles - but again, pain meds kept that very controllable.
Kathy
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Lupy ~
I definitely had the 'hit by a Mack truck' feeling when I awoke in the ICU. This lasted approximately 18 hours, and I slept most of that time. Once I came out of it (fatigue, anesthesia) I started feeling much better - but I was weak. Of course, I was also over 60 which probably was a factor, but I was in very good health and suffered no complications. No CSF leaks, headaches, incision infections, nausea or dizziness. No neck aches, either. Just SSD (just as I was prior to surgery) and a few days of mild double vision (I could watch TV but reading was a challenge). I assumed the extreme fatigue I experienced in the first 18-to-24 hours post-op were a combination of the trauma of a 9-hour skull surgery and the after-effects of the anesthesia.
These varied post-op experience are informative and, once again, underline the fact that every AN surgery patient has a slightly different experience. Some have a relatively easy time of it, some have a bit of trouble that resolves fairly quickly and some, unfortunately, have a lot of problems, some intractable. There are so many factors involved; size of the AN, it's exact location, how difficult to remove the tumor, length of the surgery, surgical complications that arose during surgery, the surgeons skill (and experience), the patients overall health and attitude, etc. Some AN surgeries are over in 5 or 6 hours. Most are 8 -10 hours. Some go 12 -16 hours (or more). It's a very mixed bag and while we can gain some insight from each others experiences, there is simply no realistic way to accurately predict someone's ultimate surgical outcome. Still, exchanging surgery experiences is a useful tool for learning, as long as we realize that 'your experience may be different' - because it probably will be. :)
Jim
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Hi Lupy,
We may have all had the 'hit by a truck' feeling if it weren't for the pain meds. The first few days, I was so out of it and it just didn't feel too badly. The little annoyances were more surprising - the IV's (they had to change the locations a couple of times), plus it was a bit painful to get some of the meds through them. The shots in the tummy didn't feel too great either. I guess my head was too numb at that point to hurt. Plus I was on Percocet and Valium. Once I was home, esp when / if I tried to ease off the pain meds and did stuff like stay on the computer too long or not put eye goo in or go for a walk when it was freezing and windy, then I would get some killer headaches. I was thankful I didn't get nausea (well, just a little). In the hospital I always wanted to try to walk to the bathroom and that freaked them out because they thought I would lose my balance.
Keri
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I have been reading some "preparing for surgery" material online and a lot of it references that you're not supposed to have acrylic nails or colored nail polish on fingers/toes during surgery because the color of your nails is an indicator of low oxygen.
Um, really?!?!? It's 2009 and we're doing microscopic brain surgery and sending Rovers to Mars, but they need to wait to see whether my nail beds turn blue to know if my blood oxygen is low? :o Isn't there some slightly higher-tech monitoring system? :o
Is this still commonly advised?
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I don't generally wear nail poilish but I'm pretty sure the plastic thing they had clipped to my left index finger was an O2 monitor. Seems a bit outdated to me.
..take care.. tim b
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I'm going through the five stages of pre-AN surgery... Denial, Bargaining, Shopping, Vanity, Acceptance. They can take my vestibular system, but they can't take my nail polish! :D
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Apparently I need to clarify my "hit by a Mack truck" comment ::)
I didn't mean I was in intense pain - didn't really have any pain or take any pain meds post op.
My biggest discomfort - and I'd definitely label it a discomfort - was a sore neck from having my head in a strange position for 7 1/2 hours.
I just meant I was totally disoriented, nauseaus, dizzy, seeing double, and I was tired as hell.
Kind of like I didn't know what "hit" me.
Sorry for the confusion :P
Jan
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Are THOSE the five stages? Wow. I went through all of those. Somehow the shopping has persisted, however. :P
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I think excessive shopping must ahve been my first symptom of AN! Hahaha! No stress about the Mack Truck comment, I just wanted to clarify the pain levels I could 'possibly' be faced with. Essentially I feel I can manage most things, as long as I have some idea what it is I am meant to be managing. Waking up to massive ammount of pain etc and not being prepared for it would have thrown me off I think - but it sounds like, from the people here and people i have spoken to who have been through this with my surgeons that this hopefully wont be the case!
However, I am worried about my neck, i have lots of back and neck 'issues' - pain, stiffness, migraines etc. My osteopath has offered to come to the hospital and give me a treatment after the operation. Apparently he has done this numerous times for brain surgery patients. Has anyone else had surgery who has back issues?
Ice chips, thats a delicasy I havent heard of before - do they come with whiskey?
Lupy
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Ice chips, thats a delicasy I havent heard of before - do they come with whiskey?
No, they don't, but you won't care. They will taste like the best things in the world, trust me.
Catherine (JerseyGirl 2)
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I'm thinking whiskey on the ice chips might have improved things just a tad. The problem with the food at the hospital was not necessarily how good it was but how bland. I'm one of those folks that believe tabasco is little more than ketchup with an attitude and sriracha sauce will improve just about anything.
..take care.. tim b
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Apparently I need to clarify my "hit by a Mack truck" comment ::)
I didn't mean I was in intense pain - didn't really have any pain or take any pain meds post op.
My biggest discomfort - and I'd definitely label it a discomfort - was a sore neck from having my head in a strange position for 7 1/2 hours.
I just meant I was totally disoriented, nauseaus, dizzy, seeing double, and I was tired as hell.
Kind of like I didn't know what "hit" me.
Sorry for the confusion :P
Jan
Even with Jan's clarification of her "hit by a mack truck" comment, it still goes to show that there's a wide variation upon waking up in the recovery/ICU unit. My neck wasn't sore, I wasn't disoriented, nauseous, dizzy, or seeing double. I was tired, but not overwhelmingly (for me, the episodes of fatigue came later in the process). I'm certainly not trying to cast myself as some sort of medical hero -- that's just the way it was. Difference in procedures, tolerance to anesthesia, etc., etc. -- I imagine that these factors and more contribute to the range in responses. I think you can rest assured that the ICU folks have "seen it all" and will do their best to keep you comfortable.
Catherine (Jersey Girl 2)
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Waking up to massive ammount of pain
If this happens, you need a lot more drugs! Seriously. There is a lot medicine hasn't figured out but if you're in massive pain, they should have someone managing it instantly. There are a lot of discomforts and indignities, and I'm sure some pain and soreness, but post-op pain can be managed well enough and from what I gather on here, it's usually managed pretty well "in advance." I haven't seen anyone say "it was the worst pain of my life" or any really dramatic statements and in fact, I remember at least one commenter saying childbirth was worse. ;)
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Lupy,
I have previously summarized the early post op experience as "the first three days don't count." What that is meant to convey is that it is quite possible to have some distressing symptoms when you first wake up, but that does not mean the surgery didn't work well. It just takes a few days to shake off all the effects of the anesthesia and the shock to your system of having been through brain surgery.
As you have no doubt already noticed, the precise details of the experience varies by patient. We look forward to hearing about yours. :)
Steve
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Besides the normal pain, pressure bandage and all the other usual things everyone else has described, I thought I would add about my first two "wake-ups" directly after the surgery. My eyes opened, the room spun, I threw up and they put me out again. Did that one more time (not sure how much time passed) and then the third time I woke up, I could stay awake a bit and the room spinning/nausea part had completley gone. Then they let a small herd of my family in for a few minutes just so they could see I was ok.
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I'm with Jan on the neck thing. I had some neck issues prior to the surgery and being in a strange position for hours during surgery aggravated it no end. A heating pad and OTC meds helped tremendously. I also had my orthopedic pillow brought from home. That was the best solution. ;)
Priscilla