ANA Discussion Forum
Post-Treatment => Post-Treatment => Topic started by: newmommyLA on November 11, 2009, 07:12:27 pm
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I really dove into this surgery head first once I got my diagnosis. I thought mine was small and by being treated at House, I would most likely avoid all the scary stuff. I was willing to lose my hearing if I had to, but I've really suffered a lot more unexpected surprises than I was imagining I would. Of course, it's not all bad. The tumor is gone and I'm being told the facial weakness is temporary, but how do we know for sure what's temporary vs paralysis. I get the part when you're checked right after surgery and I'm told that I was all smiles. That's supposed to be good. About a day and a half later, not so good. Today House told me I'm a 6 on the scale (being the worst), but he expects it to come back. It might take 3-4 months or maybe it'll be sooner. How are you supposed to take this? I want to believe it'll come back, but I know there is a chance it may not return to 100%. How do they make the distinction between paralysis and weakness? Is it just based on the after surgery smile test or does it mean the facial nerve was actually cut?
Lately the head noise has gotten so bad I've really been freaked out by it. Am I to live with this loud noise in my head forever? Again, the docs say, it will get better, but it won't go away. I know there are many people on this site with varying degrees of noise and some sound much worse than others. My hearing went from 100%-0% (still not confirmed with tests, but I can't hear anything) so maybe my head noise is louder now because of the great big loss? God, I hope it gets better.
My balance is still wonky, but I force myself to walk almost a mile everyday. I have so much nervous energy built up that I have to do something. I have been counting days with expectations for improvement as I compare myself to others, but I really need to learn to live like this and hope it improves. Instead I've been running away scared because it seemed so intolerable to me.
I wanted to be a great big success story for you guys here, but none of us have any guarantees. I thought since I was young, my tumor small, I had 100% hearing and good ABR tests, I my chances for success were great. So, I'm disappointed and trying to accept myself the way I am for however long I need to be that way. I have to get back to my little 4 month old son and my life soon. Hopefully, I'll get a little better everyday and things won't seem as awful when you're living them as they do upon first hearing your outcome.
I really don't want to scare new patients. So may people have had better results lately than I have. And besides, my tumor is gone and I'm supposed to get better on the facial. The risks are there for us all no matter how big or small the tumor, but trust your doctors and know that you can get through it whatever your outcome may be. I'm still working on that last part myself.
Thanks to everyone here who has supported me so much already!
Love,
Amy
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Hi Amy .....
So glad your surgery is over and you can now concentrate on the recovery phase of this journey.
First of all, unfortunately size of the AN is not the only determining factor on post-op results. It sounds like your "little" tumor was pressing on your facial nerve before surgery from your eye twitching symptoms beforehand. It is not surprising, then, that you have had some issues with facial weakness post-op. I am not a doctor, but from what I have read and learned from others on this forum, if you had a normal smile immediately post-op your facial nerve was probably not cut. Sometimes the facial nerve has this delayed reaction to trauma and it often takes several weeks (maybe even months) to recover so I would not give up yet.
Others will chime in here, I know, to tell you their experiences with this.
Good for you in walking a mile almost every day ...... that I could not do for weeks after my surgery.
Do not worry about scaring newly diagnosed people ...... that is what we are here for ..... to support and encourage, no matter what comes. As you said, there are no guarantees with this pesky tumor ..... too many factors play into the results ..... size, location, shape, etc.
You sound like you really are doing very well and hang in there, it will get better!
Thoughts and prayers.
Clarice
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Clarice said it all, beautifully. I would just add again that two weeks out is very early after what is very major surgery. Difficult though it may be, try to take the long view -- I remember reading, probably here, that you should judge your outcome at a year past surgery!
Not that you'll have to wait a year for improvements -- as each week passes, things will get better. Whatever lingers, you can deal with one at a time, but you are still in a stage where you have probably six solid weeks of regular, significant improvement ahead of you, then more subtle improvements after that.
Hang in there. The facial paralysis certainly adds a physical and emotional wrinkle to your recovery, but try to remain optimistic that it'll rebound sooner than later! And I'm quite sure your balance will improve dramatically -- two weeks out is still very early on that.
Best wishes for some leaps and bounds in the next few weeks! :)
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I'm so sorry you're frustrated and things didn't go as smoothly or easily as you thought they may have. I do believe that much of how we feel after surgery also depends on our expectations. What a hard thing to manage, given that the surgery and results are different for everyone. Having said that, even if you had stressed out and thought the worst prior to the surgery, you would have the same results and would have spent much more time stressing.
I'm happy to hear that your surgeons expect your facial paralysis to resolve. I'm really hoping that you beat their expectations in that regard.
The head noise *should* lessen over time. That, and you will get used to it a bit more too.
You sound so determined, and I'm sure that will assist in balance recovery too. You're forcing yourself to adjust to it's new environment. It's a great thing-but also cut yourself a break here. You are still really new out of surgery. Things take time. It's frustrating to wait around and feel like you're not playing a part in your healing, but our bodies really do need to figure some of this out on their own. Make sure you don't push yourself too hard.
Huge ((hugs)). I can imagine how frustrated you are. Everyone likes an easy success story. I'm hopeful you'll be on the easier pathway soon.
Adrienne
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Amy, that first 2 weeks post op is a hard time and then it does slowly improve as the brain learns to adjust. The biggest thing is to not push yourself too much now to prove that you will feel normal again. You really will. I know this from experience as have been thru 4 surgeries due to NF2 with 3 tumors. You are at the time where you do feel like it never will as has seemed so long and why aren't I better by now. Plus I've been thru facial paralysis twice and mine did improve in time. That can take time as the nerve has to heal before the muscles can work. Your facial muscles are not like regular muscles that can atrophy soon so they will survive. So dealing with that is hard also. This all is a very emotional time. Keep us posted how it goes and we are here for you! Cheryl R
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Amy,
I'm sorry that your recovery is moving along more slowly than you'd like, but as others have said, two weeks post-op is still quite early in the process. Walking a mile every day is pretty amazing! As you mentioned, your tumor is gone and Dr. House (who performed my surgery, too) is optimistic about your facial improvement -- and I think you'll agree that he has lots of experience on which to base his optimism.
Try not to be too hard on yourself, and know that all of us on the forum are cheering you on!
Catherine (JerseyGirl 2)
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Amy,
You have a great attitude. I know you are disappointed it didn't turn out better, but it is a chance everyone takes. You certainly made a good treatment choice, but you just can't tell what will happen, and no one is guaranteed anything. You seem to be taking it in stride, and as others have said, you will find it does get better with time.
Take it easy and be good to yourself. It is going to take some time, but you will make it. Meanwhile you have us.
Steve
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PS: If you were "all smiles" after surgery, your facial nerve was definitely not cut!
Personally, I found Dr. House to be the most conservative prognosticator of everyone I dealt with there, so if he's optimistic, I do believe that's a good sign, too.
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Amy~
Girl, if you are out walking a mile a day, you are MILES ahead of me in the recovery game!! I know it stinks, but this surgery/tumor requires LOTS of PATIENCE in many different ways. Stick with it - your determination will get you far. Be determined, but have realistic expectations - celebrate something (no matter how big or small) EVERYDAY and know that it is OK to have bad days where you don't feel very good - this is all part of the healing process! Just don't let those days outnumber the ones where you get up & try! I was young too (25) and had a very large tumor and stroke. I didn't exactly end up with the results I might have planned for but I have learned that there are a lot more important things in life and I have a GREAT one & am blessed with a wonderful, supportive hubby, beautiful girlies and a great host of friends and family! I am sure you are too - take a minute to stop a ponder on that. Please don't think that my life is all sunshine & rainbows - it isn't/hasn't been but things are a bit easier when we CHOOSE to look at things in a positive way! Again, believe me, I know this time STINKS! But like others have said, you are only 2 weeks out and you are doing GREAT!! Please feel free to PM me your number if you would ever like to chat! You have received so much good advice here - take it to heart! We are all here for you!
K ;D
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Amy
i just want to echo what others have already said: I know 2 weeks out seems like a lifetime but really it is still so early on in your recovery. Reading your post brought me back to when I was where you are. I found myself completly unprepared for my facial issues. I don't think anyone can grasp just what it is like until we are in it. I was blown away with the toll that this surgery had taken on me. But here's the good part: I am doing wonderfully today! Recovery from AN surgery is all about time and patience for your body and those nerves to recover. There is no way that anyone can predict to how a patient will react to surgery. You did the right things: you did research and you chose a Dr with loads of AN expirence. This is not the end of your journey rather it is just the beginning and so far I would say you are doing wonderfully. I don't think I walked a mile for at least 3 or 4 weeks post op. The "noise" does lessen over time-I barely notice it now and it is very positive that your surgeon is optimistic about your facial recovery-they are ususally pretty god a predicting these things! My surgeon told me that my "weakness/paralysis" would start resloving by week 3 and he was right on! It was not instantaneous rather a very gradual, subtle process. Just realize that you cannot make this process go any faster-it is going to happen when it is ready to happen. It's a little easier to cope with, if you mindset is to nurture you body and give it the time it needs to heal. Good luck Amy, I just know there will be a day when you are writing a post similar to this to someone who is newly post op.
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I want to agree with everything that has been said, but I know how disappointing and frustrating it is at that stage. It's also hard when you expected a very different outcome, believe me, I know from experience. I was told I would have no facial issues but when they got in there the only way to get that bugger out was to cut the nerve. I was devestated at first. In some ways i think they should do more at preparing patients for the chance of paralysis even when it doesn't look probable. I wish someone had given me even a tiny bit of info about it. But, that being said, you are doing great. I know it doesn't feel like it but take it from all of us who have walked this road, you are doing incredibly well. It's going to get better!!!
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(Hugs)
I am only 7 weeks out, so I remember my feelings at 2 weeks out, and they were bad. I remember thinking two weeks was forever and I should be doing much better, but in reality 2 weeks is nothing! You will get a little bit better day by day and I promise in a few weeks you will be able to look back and see progress. Maybe you'll still see a long road ahead, but there wil be progress behind you, too. Heck if you're walking a mile you're already better off than I was at 2 weeks - I was needing someone to hold onto me as I got down the driveway! Now, I can walk a mile, on a treadmill or on the road, by myself. So just think where you will be in 5 more weeks!
FWIW, the tinnitus bothered me the most around two weeks post op. It's still there to the same intensity right now, but it doesn't bother me as much.
Keep your head up and give yourself time - you're doing great!
Oh, and for facial, I came out paralyzed, but since my facial nerve wasn't cut my doc says I'll probably be smiling again in 9 months to a year. Sounds like forever, but I'll take it! Hopefully you'll get an even better prognosis!
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newmommy,
They do the smile test and blink your eyes test when you first come out of recovery into ICU. Since you had a good response, they think it is only weakness. It takes a while for your body to heal and rest is a big part of that. Take care...
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Amy - I also had my surgery at House with Slattery and my facial nerve also was disable after four days. I'm in my fourth month and a lot of changes have happened, I can smile with a little bit of work and my eye almost closes. I know you don't want to hear the word "months" but that's what you need to set your mind to, it might happen sooner but if it doesn't then you know where your expectations are. Don't look at the mirror too much, think that you're emotionally able to smile, and that's a great feeling, it's just your exterior smile. It will all come back in time, have faith in God and a lot of patience.
God Bless you!
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Amy, Amy, Amy.
You ARE a success story - you just don't realize it yet :)
Two weeks is nothing on the AN road to recovery and you WILL get better and see progress as time goes on.
I know how hard - and frustrating - it can be, but hang in there. Remember you are stronger than you think and better days ARE ahead - I'm sure of it!
Best,
Jan
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Hi Amy,
I hope this finds you feeling better, after reading all these supportive posts. Yep, it does take quite a while to recuperate from the BRAIN SURGERY itself,and the little surprises that come with it-up to a year even. They don't mention that preop usually >:(
It's one day at a time, before you know it, you'll be looking back and seeing how you are improving.
Heck, with that little darling baby at home, you probably have the postpartem stuff still going on,along with major brain surgery. :o
THAT is a full time job in itself. I can't imagine going through both.
Enjoy your snuggles with your baby and in time you will notice improvement in the facial stuff. It is a slow road, and patience is a virtue.
Let us know how things continue to go. We are rooting for you!
Maureen