ANA Discussion Forum
General Category => AN Issues => Topic started by: skamper on March 13, 2010, 10:18:59 pm
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Hi all, it's Susan! I haven't been on in awhile, things have been a little stressful. I got my surgery scheduled. It will be on April 2nd at Methodist Hospital here in Omaha, Ne. Dr Doug Long and Gary Moore will be doing the surgery. I'm a little scared about the whole thing but know I'm in good hands with these doctors. Dr. Moore is giving me a 50% chance of saving my hearing. I guess that's better than the 30% I had originally :)
I've been trying to get everything in order before the long process and down time I will soon be having. I'm hoping you guys will give me advice as to what to prepare for and what to expect after the fact. I just want my family to know as much as they can before then. They will be my support system through all this.
I will be updating you all soon, I promise.
Susan
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Congrats on the surgery date Susan!! That is one of the most important things to do, getting that date set. Then it's a bonus if you feel really good about it, which goes a long ways. Now that you are no longer in the driver's seat, just sit back and relax. Try to work out a little bit, either by walking a lot or something that will keep your mind healthy and active which might help you keep dwelling on the impending surgery too much. Also do a search on these forums on what to take (or not to take) with you when you go into the hospital. A lot of people have these grand illusions that they're gonna get caught up on reading and stuff like that, but you'll be hard pressed to be able to see straight for a few days! :) You didn't say what kind of procedure you were going to do, I am assuming either retro-sigmoid or Middle fossa, as you stated your hearing may be saved. If it's retro, look into the threads on here about head positioning before you go under...may make a difference in your post recovery!! I am sure you'll get tons of good advice as the time nears, but these are thing things that just popped into my head right now. Good luck and keep us posted!
Jay
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Thanks for the info Jay~
I am having retro-sigmoid. With were the tumor is sitting and how large it is, this was really the only option. I just hope the facial numbness will go away after the surgery. My balance has been gone for quite some time now so that doesn't seem to be a problem. The numbness I can do without. The doctors say that should come back.
I will check out all the info I can on here before the big day.
Accept what it is and keep on living!!!
Susan
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Susan,
Congrats on setting a surgery date.. In many ways, that's the hardest part of this journey. To prepare your family, I only have a few things that you can tell them.. First, the first 3 days after surgery don't count. You'll probably look like and feel like you were hit by a mac truck, but that WILL subside.. so, they should know that the first three days don't count. Second, they should be your advocate with the doctors if/when you can't be.. Third, oft times healing comes slow but sure. I was out of work for 6-7 weeks and really went back to early given where I was in my recovery, but I made it through just fine.. They shouldn't expect the you have surgery one day and be feeling fine just like normal the next; it doesn't work that way.. Post surgery fatigue will be a major factor for some time after surgery. Lastly, but not leastly, IF you have any kind of facial weakness after surgery that it supposed to come back, it will take an excrutiatingly long time to come back. I'm almost 2 years out and I'm still getting movement back.. As my doctor told me, they wouldn't even consider the possibility that some weakness may be permanent until AT LEAST 12 months after surgery and even then he'd see. There are no two ways about it; it just takes a LONG time to heal your facial nerve if it's tweaked during surgery causing temporary weakness. If you read my blog (listed below in my sig line), you note that I spent some time about how frustrated I was with the slowness to return. As long as they are prepared (and you are) for this real potential, then it will ease it a bit..
As Jay said, much of what happens from this point on is beyond your control. Read in the headache section about how to talk to your doctor about head/neck placement during surgery to reduce the chance of post-op headaches.. Sit back and relax. As Jay said, you may want to exercise a bit because you're going to spend a fair amount of time after surgery lying around doing nothing.
Again, congrats on the surgery date... Add it to the calendar if you haven't already and we'll all be here thinking of you on that day and after... Are you going to have a family member or friend come here during and right after surgery to update us on how it's gone and ask any questions that come up? I know Jenni came here for comfort during my long surgery and posted several questions in the few days after surgery.. This place was great for her during that time.
Regards,
Brian
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I have one piece of advice and that is to ask your doctor when they will be coming to see you daily, they usually do their rounds at the same time everyday. Mine came at 6:30AM before their daily surgeries and it was tough because my family was not there the first day or two. I wasn't really able to talk to them or anything so that was hard, especially when my family came in later and I tried to rehash what the doctors were telling me. Not a bad idea to find this bit if info out...
And good luck to you!
Liz
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Susan,
Great info from the former "posters".
Everyone's story is a little different post op, but do expect to feel crummy for the first few days. Sleep through it if you can, between being awakened every hour!
Expect/demand to be pampered for the first few weeks and rest, sleep, drink, walk, repeat cycle. Your body is pretty good about telling you what you can and can't do. Do not bend over for a while after surgery, which may increase headaches. Probably won't want to anyway ;) I enjoyed music CDs of calming, soothing zen like music....Zzzzzzzzz.
The balance issue may or may not be a problem. Since your balance is already off, hopefully your other side is "compensating" and you may actually be OK after surgery.
I had little balance/dizziness post op because my other side had already compensated.
Will be here before you know it. Do you have kids?
Maureen
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Hi, Susan ~
Congratulations on securing a surgery date! I couldn't add anything substantive to the previous comments so I added your surgery date information to our AN Treatment Calendar, instead. :)
http://my.calendars.net/an_treatments/d02/04/2010?authenticate=&display=M&style=B (http://my.calendars.net/an_treatments/d02/04/2010?authenticate=&display=M&style=B)
Jim
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Thanks everybody, so far everything you've said has been very helpful.
How will I even know what to take to the hospital? Will they send me something that tells me all that? I got the sheets that tell me what medicine and all to stop taking before surgery.
My husband just asked me tonight how many days he should take off. My surgery is on a Friday and he will be off the weekend of course. Am I better to have him take more time off after I get home or while I'm still in the hospital? If I sleep most of the days away, I don't see why he would need to be with me 24/7. Is that me just being hopeful that I will be okay? I guess what I'm saying is that I'm scared to death and I don't really know what to tell him.
Also, did most of you take off a few days or so before the big day? I just told work when my surgery day was and they have my FMLA starting that day. Should I be taking more time off before hand? I do think I will take the day before off for sure to spend the time with my girls. Help me to decide what I should do, I'm so confused.
Thanks for any more advice. If there is links or other sites to get more info on surgery and what to expect, I would love to know them.
Susan
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Aren't these things just fun, how they reroute your life? :) Seriously though...taking time off before or after all depends I guess on if you feel you need to do it. Some people aren't too particular in the days leading up to it, some have to work out of necessity, some work just to keep their minds off of things. But if you feel you need time off before you all go in, then take it! That way you can be with your family and have some fun. Did you get the information packet from this website (ANA organization). It has a lot of good information for you on some of the question you have asked. You can go here for it http://www.anausa.org/sc/apps/forms/forms.cgi (http://www.anausa.org/sc/apps/forms/forms.cgi)
As far as what to take to the hospital, do a search for that subject....but here's a link that's pretty good in that regard... http://anausa.org/forum/index.php?topic=34.0 (http://anausa.org/forum/index.php?topic=34.0)
As far as how much time your hubby should take, that again depends on how things go for you. I had a real good experience, no complications other than balance issues, and I definitely needed help for a good three weeks after my surgery. Other people's experiences are different of course, so as more people chime you can get a feeling for what it'll take. Anyways, take it easy Susan, slow down and breath. Things will be ok. Please keep asking more questions, we will all try to help you along, ok? Take care and looking forward to hearing from you more!
Jay
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Hi Susan,
Definitely have your hubby take at least one week off or two if possible counting the day of surgery. He can always go back to work early, but you just don't know how you'll feel.
Do you have anybody else who can come help with the kids (depending on their ages). You will want someone to do laundry, cooking and cleaning! My husband was a trooper. He complained after a couple of weeks, "All I do is go shopping and cooking and dishes!" (Welcome to my life, honey :) ) My recovery was a little slower. As long as you are getting around the house and have someone to fetch stuff for you, you should be good. Every one's recovery is sooo different, just hard to say. So it's a "play it be ear" scenario.
As far as what to bring to the hospital, basically bathrobe, lip balm, roomy nightie, slippers if you want, though they provide the skid slippers. Don't worry about make up, books. And a change of clothes for when you go home, that's about it. Oh yea, and toothbrush, brush, etc.
Will be here soon. How old are your girls?
Maureen
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Jay, thanks so much for the links, I will definitely be looking at those. I love your quote too, too funny!!!
My girls are 9, will be ten in April, a 13 year old, and my oldest will 15 in July. They seem to be keeping it all in right now. They talk to their counselors at school which is good. The oldest has had a couple melt downs during the school day but the counselor has always been there for her. Thank goodness. She is the one I worry about the most, she's the emotional one and I know she understands everything that is going on. I know she is scared and I don't want her to be.
I have my mom and dad who just live a mile or 2 away. They will be here for us and the girls. I have lots of friends who have all offered to help in anyway we need it. My brother and his family will be coming in from Wisconsin for the surgery and that will help my mom and dad to cope. I just hope my hubby gets the support he needs. I worry about him a lot. He keeps a lot of this in right now, I worry about that. I think we are just talked out about all of it right now. I know it's serious and I'm scared, but I want him to know I will be okay.
Well I better go tuck my little one in for the night.
Thanks all, I love hearing from everyone, it helps me so much, you will never know how much!!!
Susan
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Good luck, Susan ;D
Best wishes for a successful surgery!
Jan
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More wishes coming your way for a successful surgery and a calm few weeks until April 2.
My husband worked up to the day before his surgery. He was busy and had meetings scheduled that day. I think that if we had younger children, our daughter is 23, we might have wanted to spend a special day or two together before the surgery. Up until the day of surgery neither of us was very nervous. Funny I don't really remember the few days prior to Aug. 4.
Of course there is no way of knowing up front what your recovery will be. My husband had a difficult time and I stayed in the hospital with him for 9 days until he was moved to rehab. All of the advice I heard prior to surgery was to go home the first night when he was in ICU. I did and it turned out that he could have used someone that night. While the care was attentive, I felt he needed someone there to be his advocate and watch out for him. Everyone is different, but I think it is important to have a range of experiences to get an idea of what the possible outcomes are. Ken didn't worry about dying before, but afterwards.....now that is a different story. Be very upfront about your pain and get the proper pain medication. Ken really hurt and the pain pump made a significant difference in his comfort level. Sleeping in the hospital is almost impossible! With vitals checked every hour, or so it seemed, and monitors going off all the time, dozing in between the activity was about as much sleep as he got.
I second Maureen's suggestion that your husband take off at least a week and possibly two and consider going back earlier if you are doing well. Having your family to help is wonderful. If they are able to take over the day to day stuff, so that your husband doesn't have to worry about doing those things, it will be a huge relief.
Miranda
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Also keep in mind that there will be several follow-up visits with the surgeon in the several weeks after surgery. You will more than likely need someone to drive you to those appointments (surgical follow-up, removing stitches, etc..) because your doctor will not clear you to drive likely for 3-4 weeks after surgery or longer.
It's great that you have so much help around. You won't need it per se (except someone to help chaufer you to doctor appointments and such and you'll sleep an awful lot), but your husband may need the help to keep things running smoothly in the house while you're not there helping.
Be sure that someone that you trust is with you in the hospital to be your advocate when you can't be.. Be that your parents or husband or close friend.. Just someone to watch out for you. That, I found, was extremely helpful.
Good luck!
Regards,
Brian
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Hi Susan,
All the best for your surgery, and for a speedy recovery.
Best regards
Don
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Susan .....
Glad you have a date ..... so much easier than facing the unknown timeframe. As the others have said, recovery is a very individual thing ..... including whether you want your husband there 24/7 or not. If you would be more comfortable with him there, by all means he should try to do that. My husband did not stay 24/7 because it would have made me too nervous that he was not getting adequate rest in a sleeper chair. He came to the hospital early in the morning and stayed until I was settled for the night and that worked well. Whoever does stay with you should keep a notebook and write down when you received what medication/treatment. This usually prevents any potential issues related to your care.
As for time off work beforehand, if you stop working too soon, you will have too much time on your hands to think ..... unless you use that time to cook/plan ahead to make things easier for the post-surgery days or just have some fun time with your family.
Every doctor and hospital have their own protocols, but in my situation the only things I really was glad I had taken to the hospital were a robe, my own toothbrush and CHAPSTICK!! I had a central line so could not have used my own nightgowns.
My husband had to go back to work 12 days after my surgery. (We drove home ..... a 6 hour drive ..... 10 days post-op with no problems.) For my husband's peace of mind, our daughter-in-law and granddaughter stayed with me for a week after we came home, but I really would have been fine by myself. In my case, I did not have to have stitches removed (surgical glue and steri-strips were used) and no follow-up was needed with the neurosurgeon. I did have the name of a local neurosurgeon in case I had had problems, but I did not ever need to see him.
Of course, meals brought in during this recovery time are a God-send ..... presumably your close-by family will help out in that respect.
Best wishes and many thoughts and prayers for an uneventful surgery and recovery.
Clarice
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Susan,
Sounds like you have lots of help coming your way after the surgery. You'll get plenty of TLC, and I'm optimistic that you will have a surgery without any bumps!
Praying for you for calmness-it'll be OK, you'll see :)
Maureen