ANA Discussion Forum
General Category => Inquiries => Topic started by: BarbaraH on February 08, 2011, 11:42:45 am
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I'm starting to get a little freaked out. Not knowing what post surgery will be like. I would appreciate any helpful info.
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It's hard to say, as everyone is different. Some people have headaches, some don't. Some have balance issues, some don't. Some people have facial problems while others don't. It is so individual. For me, it was not bad, as I did not have any problems. My surgery was 7 hours long, November 16. I spent one night in the ICU where I mostly slept. I would wake up with my mouth so dry I could barely swallow. But I had a very good male nurse (from what I can remember) who brought me fresh sponges on picks in ice water every time. I had no pain from the incision or the fat graft (I had translab). I had to wait most of the next day for a room to open up and be cleaned before I could get out of ICU. I was nervous the first time to sit up, thinking I might be dizzy or nauseaus. I sat in a chair first thing in the morning and had breakfast--no nausea. (They had a patch on my neck. I don't know if that is why I did not feel sick.) Late in the day I finally got a room. Instead of wheeling me up to the room in the bed, I was asked to sit in a wheel chair. I was a little nervous, as I thought I might get dizzy. I had to go from the 3rd floor to the 9th floor. But it did not bother me in the least. After I got there, a physical therapist asked me to walk a little and then to walk a few steps in the stairwell. I did not need help and could do this by myself. I had not had balance problems before surgery and I think my AN had been there so long that the right side had already taken over. So I was able to walk without any walkers, canes, or hanging on to anyone. I did not have headaches during my hospital stay, but did get some when I was home for about 2 weeks. I did have slight facial paralysis--a 2 on the House scale where 1 is normal and I think 5 or 6 is no movement at all. I've done the exercises the doctor recommended and at about a month my mouth looks normal. My eye at first did not blink with the other one and did not have tears. At about a month it started blinking normally, but now at 12 weeks, it still does not tear. I use drops during the day only if needed and ointment every night at bedtime. I have had no problems since I have been home. I had my surgery on a Tuesday and went home on Saturday. They said I could go home Friday, but I did not feel ready. I was nervous for the drive nome because I live 2-2 1/2 hours from the hospital. Some people told me that when they first were in a car, 35 miles an hour felt like 85. Some could not keep their eyes open. I had read all the posts here about what to take to the hospital and my sunglasses with me for that ride home. I put them on and thought I would have to keep my eyes closed all the way home. But to my surprise, even though we were on major interstates, I had no problems at all travelling. Fatigue stays as an issue for some time. Some people have said they have trouble sleeping on the AN side, but I do not. The last few days the scar area has been sore. I don't know if it's from wearing my glasses or the hair growing back or both. It's not a major pain or anything, just irritating. I have done well at home and have started back to teaching full time last week. I still get moments of being tired, but I joke that being a teacher I've lived tired all along anyway, so it should not be too different. :) I am sure you get many different stories here. We can tell you what it was like for us, but can't really predict how you will be. I read everything I could ahead of time. I did about 100 hours of research. I think that by being that prepared is what helped me to have a good experience. This site is one of the best to read. Good luck to you next week and let us know how it goes. I hope all will be well for you.
Sandy
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Hi Barbara and welcome to this forum .....
Sandy gave you a great description of her post-surgery experience ..... and as she said everyone is different.
Much depends upon the size, exact location, and type (sticky or totally encapsulated) of acoustic neuroma you have. Many other factors, as well.
Tell us a little bit more about your situation. What are your symptoms? How large is your AN? What type of surgical approach will you be having ..... translab, middle fossa, or retrosigmoid?
My retrosigmoid surgery was three years ago. Surgery was about 5 hours long. In the hospital 6 days. Back home (a 5 1/2 hour drive) 10 days after surgery. No headaches and no facial nerve involvement. Very tired and significant balance problems for several weeks. Still have tinnitus. Overall, for me it was not much different recovery than any major surgery.
Best thoughts. Clarice
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Hello and welcome, Barbara ~
Rest assured that your anxiety and concern over the unknown is totally normal. Although no one, including your doctor, can guarantee the outcome to your surgery, most AN surgery patients do well, as Sandy ('kraynok2') explained. If any post-op problems do arise, they are usually temporary and/or amenable to therapy of some sort. Try to think positive thoughts and please don't obsess over the 'what ifs'. This is futile and won't make things any easier. Unlike Sandy's experience, usually, the first 3 days following the surgery are a blur for most folks. Enjoy the rest!
Jim
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Good luck, Barbara.
Who's doing your surgery and where?
Inquiring minds want to know ;D
Jan
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Thank you for the information. My surgery will be at St. Vincents at Indianapolis. My tumor is 2 cm on the right side. My symptoms are: tinnitus, and occasionally dizzy and nausea. My hearing is still pretty good.
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My surgery was originally scheduled for Valentine's Day too (4 years ago), but got pushed back because my doctor's wife decided to have a baby and I guess she wanted him there for some reason. ;D My husband was hoping it would have gotten him out of buying me a gift, but no such luck. I think next year you need to find something a little more fun to do for Valentine's Day.
It's normal to be freaked out. We'd worry if you weren't! But trust that you will be in good hands and before you know it, you'll be resting and recovering.
Keep us posted on how you're doing! We'll all be thinking of you on Monday! Good luck!
Lori
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Barbara:
I know it's scary when your surgery date is this close. It's like the others said, everyone is different.
My AN was borderline small/medium at 1.5 cm, but I had so much dizziness after surgery. But I had alot of dizziness beforehand, too. I think I took longer than some to sit up in a chair & start walking. My surgery was Monday & I sat up in a chair Wednesday. The first 2 days I had my eyes closed most of the time. Just moving my eyes to look at anything made me throw up. One eye felt like it was spinning & the other like it was bouncing.
It's very important to be proactive & help the healing process along. You will notice swift improvement in your balance shortly after the surgery. As time passes that will slow down. Even to this day, 2.5 yrs post-op I still notice improvements. But if I slack off with my exercises, I do get a bit more dizziness.
I agree with Lori in that you need to find something more fun to do for Valentine's Day.
I will be thinking about you on Monday. You will be OK.
Syl
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Hi Barbara,
I really don't have much to add, but wanted to welcome yo to the forum and wish you good luck on Monday. As everyone has said, outcomes vary from person to person. Usually, outcome depends upon the location of your AN, size, whether the tumor is sticky (they really can't tell until they get to it during surgery)and the skill of your surgeons.. Do you know which approach your surgeons are using (translabyrinthine, retrosigmoid or middle fossa)? Also, will someone be posting here for you to let us know how you are?
Sending wishes for an uncomplicated and quick recovery,
Wendy
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Barbara -
best wishes for an uneventful surgery tomorrow.
We'll be thinking about you and keeping you in our prayers.
See you soon as a postie.
Jan
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All the best tomorrow...Don't worry, you'll sleep through the whole thing. ;)
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Best of luck tomorrow and the days following. Trust your doctors and be kind to your nurses when you wake up.
-Tod
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Hi Barbara, sorry I missed your post, so I guess you will see it post-op. Hope all is well, and you have a easy and speedy recovery.
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Hi from me too Barbara.
Can't wait to read how you're doing.
Hugs,
Suu xxoo
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:) Thanks for all the support!!! Your insights helped calm some of my & my Husbands fears. Surgery went great! It was a 2 1/2 hour operation. I have no facial nerve damage. The tumor was mainly on my balance nerve. So my balance is still a work in progress. I'm doing better every day. My hearing is still pretty good. The hearing in my right ear sounds like I'm down in a well. But I can talk on the phone. I still have some bad headaches (mostly at night). I'm so thankful for my ENT Dr. that originally ordered the MRI.( for catching it early), The two very skilled surgeons that did my operation and above all GOD for seeing me & my family thur this with such great results.
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So glad to hear everything went well! That was probably the best Valentine's Day present you and your husband have ever gotten!
Your balance will get better and you'll start to feel more like yourself soon! Do some walking and get plenty of rest!
Lori
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Wow! 2 1/2 hours, that's fairly quick operation!! I am glad everything turned out great for you!! Keep us posted on how things go now that you are an official "postie" now! :)
Jay
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Barbara ~
Congratulations on your successful surgery! I'm really pleased to learn that it went so well for you, not to mention, quickly. I trust your recovery will be both rapid and complete. Well done! :)
Jim
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Barbara, I am glad you are doing good. I read your story to my hubby who is having surgery March 15th. He is kind of scared and I can understand why. I hope you continue to get better every day.
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Glad you are doing so well. You will start doing some exercises for your wonky head in the near future...just make sure you do them so your brain can make some most important adjustments. It is very important you do them. Good luck with your continuing improvements.
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WOW 2 1/2 hours!! I hope for my families sake they have a similar wait, I certainly will know no difference!!
With the size of my head it will likely take days and several drills to get through my thick skull.
All the best to you!
Bill
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WTG! Barbara!
Would love to keep reading about your recovery as it's good to have happy news.
Warm wishes,
Suu xxoo
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It has been 3 months since my surgery. My balance nerve was totally removed, so my balance is still not great. And I'm having bad headaches. Has anyone else experienced this ? Will it get better?
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G'day Barbara
I ended up going to a neurophysiotherapist who gave me walking and moving head exercises. I was also put on Lorazepam. Yes, the dizziness is slowly getting better and it only gets bad when I'm stressed or not rested enough through the day.
I've been very lucky with not having many post surgery headaches but I know a lot of us have had them.
Hugs,
Suu xxoo