ANA Discussion Forum
General Category => Inquiries => Topic started by: knakag01 on May 04, 2010, 10:14:38 am
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Hello all,
Well, the time is near...I will be having translab surgery with Dr. Jackler at Stanford on May 19th. I go through waves of being nervous and waves of peace. I'm just trying to focus on all of the positive things, like how blessed I was to have found this site and the wonderful people on it. One of the more difficult parts is letting go of the inner control freak that makes the unknowns of post-surgery super nerve wracking!! I tell myself that all the worrying does me no good...I just need to prepare best I can and take each day as it comes.
On that note, I was wondering if any of you have any tips/advice/insight on after care (for both my sweetheart, who will be caring for me, and for me). From what I've read, lots of rest and walking are key. Just wondering what else may be helpful to know.
Thank you!!!
Kim
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Hi Kim .....
Yes, the time is getting near when you will have this bugger out of your head and you can go through the recovery process and on with your life. That, in itself, should bring you peace.
As you know from your reading here, everyone of us had a somewhat unique recovery experience so it is impossible to say exactly what you will experience. We are going to assume you will have an uneventful recovery process. That means the first three days will be the ones you will want to quickly forget ..... it will not be pleasant (as with any major surgery of any kind). Most doctors and hospitals keep you pretty well supplied with remedies/pain medication, as needed, etc. so those days will go by rather quickly. After that it is usually a fairly rapid recovery ..... up walking as much as you can, etc. The main thing is to listen to your body ..... when you are tired, STOP ..... right then, and rest. Do not keep going "one more lap." You may experience significant dizziness at first, depending upon how much your brain has or has not already compensated for the damaged vestibular nerve on which the tumor is growing. It may seem counterproductive, but walking as much as you can tolerate actually decreases dizziness. But, be sure to do it safely ..... with a walker or someone by your side until you are able to go solo. The last thing you want is a fall!
In my case, I used a walker in the hospital and then at home I used it at night only for a couple more weeks. I had someone with me at all times the first two and a half weeks post-op, then I was on my own and did just fine. I did not drive for a few more weeks after that ..... but there are people who have driven much sooner. My case is a little more unusual in that due to two brain surgeries, I have no functioning vestibular nerves on either side.
Best wishes, thoughts, prayers, etc.
Clarice
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Kim ~
Your anxiety as Surgery Day approaches is normal. I get the distinct impression that you're well grounded and handling it with aplomb.
Clarice beat me to all the good tips so my only advice is to do as much as you can, as soon as you can and, as your body tells you it can. I tended to overdo things a bit immediately post-op but it all worked out (because I had almost no post-op complications) and I was driving again within two weeks of my surgery date. I would also advise you to make sure your sweetheart understands that you're having major brain surgery and this isn't a simple thing. You'll need lots of help - for awhile. How long will depend on whether you have any post-op complications and your body's ability to recover. I would expect two weeks before you won't need much help but that's strictly speculation on my part. It could be more - or less. I was able to get out and about, unaided, within a week of my hospital discharge. Others have different recovery timeframes. The important thing to remember is that it isn't a contest and you need to recover the way it suits you and not try to set a 'record'. I'm sure you'll do splendidly, Kim and of course, you'll be in the thoughts (and prayers) of many.
Jim
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Thank you, Clarice & Jim! I will be sure to listen to my body and not over do it. I very much appreciate the thoughts and prayers.
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One of the more difficult parts is letting go of the inner control freak that makes the unknowns of post-surgery super nerve wracking!! I tell myself that all the worrying does me no good...I just need to prepare best I can and take each day as it comes.
Kim -
I think this part of your post says it all.
I'm a certified control freak myself and I found that the best way to deal with post op recovery was to just take things as they came. Get lots of rest and pamper yourself. Don't be afraid to ask for help - even if it's something you've never done before. Accept any and all offers - people usually don't make them unless they are serious about being taken up on them.
Good luck. You'll be fine.
Jan
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Kim, I would say that my prayers are with you on your day, but I don't know how awake I will be to pray :) So I will say my pre-op prayers are with you!
I do so hope everything goes well!
Try not to let the pre-op jitters get to you. One day at a time makes the best perspective.
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Hi Kim.
Lots of us control freaks around here! :D
My advice: Rest, drink plenty of fluids, walk, clean the house before you go to the hospital, bring chap stick and sunglasses and apologize to said sweetheart in advance for any seemingly unprovoked nagging or yelling. :D
I hope the waves of peace come more often than the worry.
The best advice I got before my surgery: Prepare for the worst, but hope for the best!
Good luck!
Lori
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Everyone's already said everything but I will reiterate what I always tell people - CHAPSTICK and patience...lots, especially for your caretaker!! ::)
K ;D
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Hi Kim,
Wow, Tracy on the 18th, you on the 19th, and me on the 20th. What a busy week on the forum. I will be praying for both of you. I am trying to prepare best I can. I too have so much to be thankful for. I had to laugh at the chapstick comment Kaybo ;D thats the first thing on my list. I am in the process of packing for the hospital and would welcome any advice. Also I have downoaded books to my ipod from audiable.com, some of which I got from the book club thread on this sight.
I have silly questions like how many pr. of Jamies should I pack ??? I'm wondering if I will be hot or cold in the hospital, I realize no one can answerer that one for me because I seem to be either one or the other all the time no matter what the temp in the room is ;D
ANyway we all will get through this and be comparing notes in just a few weeks. Good Luck :-*
Sue
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I have always been cold past my surgeries. I took a couple pair of pjs each time. You will have the ted sox on also. I did the usual lip balm and tooth brush. I take face wipes and lotion but no make up. Also the robe for walking in the hall and sitting up in the chair. I did take my soltaire game but rarely used it. TV was the only thing that really felt like doing. You may or may not feel like listening to any audio books. I am also big on taking my heavier Refresh liquigel as Iowa City only gives you the tears for day use and if one has dry eye,then just tears isn't enough. I have mentioned this but they haven't seemed to catch on. One can have possibly some dryish eye even with no facial paralysis. Think I did for 3 weeks last time.
Good luck to all with the surgeries coming up. The time before is hard but you will soon be a postie. Tomorrow I am taking an older lady friend who lives alone near us to hospital for a total hip surgery. Her family is all out east so is glad to have someone be with her. I have seen many post op hips in the skilled care where I used to work so was able to be of good help in what to expect and need post op. She plans to come to our closer hospital for the rehab then also. I think she will do well.
Cheryl R
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Sue .....
Although it is strictly up to you, I took PJs to the hospital with me and never put them on. Even though I had a central line, thus minimizing the IV tubes and other needs for sticking, it was just so much easier to use the hospital gowns. Definitely take a robe for walking in the hallway (if not you can always put a second gown on backwards for cover-up). If you are cold, do not be bashful about asking for a warm blanket. I also had two extra pillows in my bed ..... one on each side to put between my knees when on either side (sure helps keep your spine straight). After a couple of days, you will be up as much as you can tolerate, but you will be discharged as soon as you are medically stable.
Yes, it will be a busy week when the three of you have surgeries (Tracy, Kim, Sue!) so my knees will be sore. ;D Many thoughts and prayers for all.
Clarice
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Wow everyone gave such good suggestions. The only one I can give is to bring a sleeping mask for your eyes. I had a lot of light sensitivity and this came in very handy. I also remember being very hot and I had to get the staff to bring me a fan, the Dr wouldn't let them point it directly at me because he was worried I would get chilled or sick or something, but just to have it move the air around was a life saver!
My prayers are with all three of you, make sure to keep us posted.
Liz
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Thank you everyone for your tips, suggestions, words of encouragement and prayers. I've added all the items mentioned to my list of things to pack.
Wow, it sure will be a busy week! Sue and Tracy, I wish you both the best and will be praying for you.
Kim
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Don't need ANY pj's, in my opinion, but a robe comes in handy for sure, as Clarice suggested :D Chapstick is the other must have!
I was burning up most of the time while in the hospital, but I attribute that to my nausea...as you can see, everyone varies with their experience.
Best to all of you May pre-posties!
Cindy
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I didn't use the pj's either. But I'd second (and third) the chapstick. I also suggest facial wipes. I felt SO grimy after surgery - not sure why since all I did was lay there for 6 hours, not like I worked up a sweat or anything... ;D
I also suggest, if you are having the belly fat graft that you bring a pair of VERY loose pants - you will not want anything pressing up against that incision as it will likely be very tender. I didn't do this and rode home with my pants unzipped! ;D For the first few weeks after I got home, all I wore was yoga pants, the kind with the fold-over low waist - they were heaven.
Debbi, sending prayers and good mo-jo your way
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UPDATE: My surgery has just been moved again. It will now (hopefully) take place, just a day later, on May 20th.
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Hi Kim,
So now your surgery is on the same day as mine :). I will be thinking of you.
Thanks to you all for the great input. Keep them comming.
Sue
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Like someone said previously, we're all different.
I didn't have the issue with my fat graft that Debbi had with hers, so I wore my regular clothes home from the hospital without any trouble. I never used chapstick post op.
I never wore pjs - just the gowns the hospital gave me - but found a robe to be a big necessity for walking the halls. Nothing like that opening in the back of those fashionable gowns :D
I packed a bag, complete with reading material, but never even opened it. I had double-vision for a day or two post op and that, combined with the fatigue, lead me not to read a thing. Even watching TV was difficult, unless I closed one eye.
The hospital pretty much provides a lot of "musts" - like a comb, toothbrush, slippers, etc. - so don't overpack. A pair of sunglasses for the ride home is very helpful.
And once you get home a shower bench and baby shampoo are wonderful for your first post op showers. Usually your balance isn't good and shampoo in your eyes just adds to the problem because you tend to close them. Baby shampoo solves this problem nicely.
Jan
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Even watching TV was difficult, unless I closed one eye.
Too funny I totally forgot about watching TV with one eye closed...hilarous! :D Again not to worry it was only a couple days!
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* taking notes* ;)
I figured on the fan, when my mother had major knee surgery, she was given a morphine drip. When she came off the morphine (two different times) she was sweating buckets and was constantly hot. I bought her one of those cheapie little fans that take AA batteries, and she said it was her saving grace. I've only had morphine once, and it was only a shot. I'm more worried about being too hot than too cold. I brought my mom a gum and mints too that helped with the nausea and that irritable feeling when you can't brush your teeth every time you feel nauseated.
The facial wipes, fantastic idea! It put it on my list twice because I'm weird like that
The sunglasses, while you would think would be common sense, were not on my list before. Wow, and here I thought I was almost prepared!
Also on my list is my very embarassing little pillow I've had forever. Some kids have security blankets, or teddy bears, mine's a pillow. I sleep better with it, and even though I'm certain that I will sleep anyhow, it has tremendous comfort value.
Sue and Kim, we will have a postie party. Even though we may all have different or no complications post-op, its comforting to know someone else is going through the same thing at the same time.
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Hi Tracy .....
Sounds like you have all of your bases covered so now you can relax.
Just a thought on the sleeping ..... presuming you will be on steroids, many of us had major insomnia as a result so do not panic if you have trouble sleeping while on them. It's a very small trade-off to avoid other annoying after effects.
..... and yes, the double vision seems to be a rather common event for a few days afterwards. Reading was out of the question for me in the hospital. I remember my husband would stop talking every time I closed my eyes until I told him, "I'm not going to sleep, it's just that there are two of you with my eyes open and I can only handle one of you." :-*
Re: the sunglasses ..... I am presuming they would be useful for the drive home from the hospital, when everything will look and sound weird. If you currently wear glasses, you need to take an old pair along, take the AN side bow off, or have flexible bows because the bandage will make it a challenge to put them on otherwise.
Clarice
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Yes, there are hundreds of experiences out there dealing with post-op, so this forum is indeed a treasure trove of information!! It certainly helped me!! I wore the jammie bottoms, beats having me bum sticking out there whilst wearing those wonderful hospital gowns!! I also had my robe, which was in itself a nice security blanket!! On the subject of sunglasses, my wife got clever and remove the one arm that would have made contact with my scar, as it was right there where it would have rested. I would also suggest to refrain from any computer activity for as long as you can stand it!! Also keep the visits to a minimum, too many people at once is info overload, as is the computer. Good luck to all three of you on that week and let us know how it goes!
Jay
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I agree with Jay about visitors...you will probably want to be left alone and not feel like you need to be entertained. I told my wife and daughter to just go shopping...and they did. They came in the early morning, late afternoon and dinner time. 15-20 minutes and they were gone unless I asked for them to stay.
The clock seems to move rather slowly, so watch tv or read. I also set several goals for my self. I had to be able to eat and walk to leave the hospital. Eating was easy. Walking took some effort, so I set goals to get up every hour and walk the hall. There are grab rails to hold on to. At first I walked 3 door ways from my room and then back. Next time 10 doors. Later I walked without the grab rail. My wife showered me the first day, but my goal was to do it myself the next day. This really got me ready to go home and not be too much of a burden on my wife.
When you get home, just sleep. The steroids really bothered my sleeping pattern, and I was getting up 2 or 3 times a night because I could not sleep for long periods of time. Any sleep you get at any time of the day is good for you. Do not even try to get into your normal living pattern. Your normal timing will return when your brain is not full of all those drugs.
My taste buds changed, so things that I would normally drink or eat did not taste good. About one month later, I was back to normal. Be prepared to change your diet.
Everyone has a really different type of recovery. Mine was really easy...not perfect...but better than most. ATTITUDE and EXCELLENT HEALTH were keys for me. Good luck to you and your family. I know you will do well!