ANA Discussion Forum
AN Community => AN Community => Topic started by: eyeamneone on November 09, 2006, 03:51:37 pm
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...well sort of. I had my AN surgery two weeks ago. It lasted about 8 hours. I spent a horrible day in ICU and then four days in a regular room after that. I am having problems walking with balance. I lost all hearing on my right side (the side with the tumor). I'm feeling really down in the dumps. My question to all of you is (and i know that everyone is different) but at what point should I be two weeks after the surgery? Should I be up walking around all day and sleeping at night or resting the majority of the day and walking a little more each day? I'm really confused. Just a reminder I had a 3 cm AN pressing on the facial nerve. Any and all input would help. How long did it take for most of you to get back to work and start doing somewhat normal stuff? Am I rushing it?
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You're on track, no worries. Just relax right now, let your body recover. After about a month you'll want to pushing yourself a little, walking more, that kind of stuff. Everyone is different. Some people are up the day of surgery, I wasn't able to walk for 2 months after mine. Your body will tell you when you're ready. Use the time to relax.
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eyeamneone,
 At two weeks post-op I'm guessing that you're at home, and chomping at the bit to get back to everything you want to do.  It's normal to still be fatiqued, with your abilities for activity improving every day.  I found that I could walk a bit further each day, usually followed by a nap.  Be patient (no pun intended), don't overdue it, and continue to increase your activity level each day.  If you haven't signed up for physical therapy yet, ask your doctor to recommend a PT that has vestibular retraining expertise.
 Best of luck to you, we're pulling for your complete recovery.
Regards,
Rob
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CONGRATULATIONS!
I'm thinking of you. I have 17 days left and counting.....until Ct. scan and the rad-series. (CK)
I had five major foot surgeries with pins, and screws on a few of those surgeries. I suffered the tortures of hell. I had full facial laser and more. (19 major surgeries)
Just be good to yourself. Develop your brain cells if you can. (if no headache) Do reading, TV, DVD, phone calls, computer if you can. The time with my surgeries went slowly as, the pain meds didn't work at all for those pins I had to walk on. I had crutches but, had to put my foot down at times and it hurt without putting any pressure on it. My foot is a big mess as a result. Every single step I ever take from now on is really bad.
Hang in there, and yes get all the therapy you need. Be good to yourself and enjoy calming music.
All this began back in June for me and I'm still waiting.......
We are here for you.........17 days for me and COUNTING.......it is hard waiting, too..........Palace
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Congratulations on making the two week party. ÂÂ
Just keep resting until your body tells you it is time to start doing more.  The exericse you get just going in and out to the mail box might be enough for now.  Eat well.  Try to get up and get some fresh air each day, but if you don't feel like doing special exercises yet then don't push it.  Yes, everyone is different, every AN is different, so I can't find any assignments for ya' yet. ;D ÂÂ
We'll just telll Captain Deb you are still groggy headed!  :D
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I just got off a walker at two weeks !!!! sounds like your doing fine ..
at 2 weeks I could not make it tho a day with a couple hour power nap!!
remember .. it talks 1 week to 1 month for EACH hour of surgery ..
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AAAAAAAAAAARRRRRRRRRRRRR!!!!!
Congrats Eye--you be a Postie now!!!!!
I tried to walk a bit each day--I had someone to lean on and walk with me--which really helped--I couldn't walk by myself for any distance other that gettin to the head for at least 4 weeks. If you have someone to get out with--do it--your balance will come back that much sooner. Also go ahead and make your Physical Therapist appts if you can--you probably have used up your deductible a nd you want to get those in before January.
But by all means nap if you feel tired and sleep as much as you can--I have sleep problems anyway and I had to take sleep meds. Also eat well and take your Flintsones--a little dark choclate to wake up those tastebuds helps too, as does a moist heating pad for the neck--the one I used is a Thermaphore and I couldn't live without it.
Watch out for spending too much time on the puter or reading--it stresses your eyes and neck. But be sure to check in with us for great information, good thoughts and a few laughs on the Good Morning thread!
Stay strong, ya Postie!!!!
Capt Deb (http://image2.frappr.com/pix2/i/20060823/e/3/c/e3cbd418b12b0f8b3604118b82b3a58f0_medium.jpg)
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I haven't had the microsurgery, but I sure can say a hearty congratulations you "postie" (post-treatment) and now onward and upward to wellness! :)
Phyl
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At two weeks, I was back up at the hospital with a CSF leak! You are right on schedule, you're just getting off steriods and it takes a while before their weirdness is out of your system. At 2 weeks, I was just starting to wean myself off the cane, and just beginning to be able to stand watching TV and all it's weird movements. I went back to work at 8 weeks 1/2 time, and full time at 8 1/2 weeks. Doc says it'll be a good year before I find my pre-surgical energy levels. It's hard not to get frustrated with yourself, but this is not a regular surgery....remember it just takes time. Congrats on making it through to the other side!!!!!!!
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Hi ya Postie,
PLEASE, PLEASE,PLEASE, go SLOW and be good to yourself. Allow yourself to be in"down time" for a while. This is not a race. You just had major brain surgery for goodness sakes. So PLEASE don't expect too much of yourself. Regardless of how others have come through this immediate post op stuff, you have to, HAVE TO, become patient and give yourself time. You'll just set yourself back if you over do it. At 2 weeks, you should just be taking it easy, realizing how great it is that you are here experienceing each new day. Not thinking about when you can go back to work. Please take care of yourself. You are the only YOU you have.
OK, enough lecturing, the rest of us, time to party to celebrate the new postie's doing so well.
seriously, my thought and prayers are with you eyeamneone, and all of you on this forum for our continued recovery.
Amen
Patti Ut
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Hi -
Congrats on being a Postie!!
AN surgery recovery is slow, slow, slow. Having patience is hard, hard, hard. Best of luck to you.
I finally went back to work part time at 8 weeks. Easing back into work was the best choice for me. My brain was still too tired at 8 weeks to do a full day. By week 10, I was up to doing full days.
Kathy
ps: Frequent naps were a new thing in my life for the first month to 6 weeks (I think). I should have kept a journal.
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Congratulations! ;D At two weeks post op I was still in the hospital. So i think you you are doing fabulously well if you are home already. Take it easy, do what you can, but remember you still have to rest. The healing is a very slow process.
Denise
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At sixteen months post op I am stil taking two hour power naps! Do whatever feels right. I am also up to walking for an hour everday. Not all at once but an hour each day. My balance is still a major issue as is dizziness, but at least now I have an excuse!! Get lots of rest. Thank God you made it and enjoy each breath of fresh air.
Hugs,
BrendaO
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After an acoustic neuroma, you have to train your brain about the changed input. It's used to getting balance info from both sides. One safe thing to do is jigsaw puzzles. You're turning your head and focusing repeatedly, but you're sitting. I used to break out in a sweat just doing it, but I made myself do it several times a day. The best thing is walking. Once you feel better, as you walk, turn your head to one side and focus as you walk, and then to the other side. Also do this looking up and down. Start off with someone with you, as it may get you off balance. I had to stop to turn and look for traffic. But walk, walk, walk. If it's just to the mailbox, OK. Gradually extend your walks. If you don't move in ways that make you dizzy, your brain won't learn, so don't avoid it. Just set your own pace. I had a chair in the shower. I'd sit on the floor to dry my hair, and then I was ready to go back to bed! Now (4 years) I can do whatever I want, including climbing climbing walls, riding on a sailboat, etc. Just hang in there.
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Hi eyeamneone,
First, take a big sigh of relief that the worst is over. Then give yourself a break on how long it takes to get back to being comfortable with everything you've been through. Be proud of yourself for dealing with a major trauma.
In a way I envy you because your surgery is behind you.
The postings of those who have been through this help those of us who are still looking forward to a surgery to come. (Mine should be in less than two weeks. Yikes!)
Thanks for taking the time to post. I am hoping for a speedy recovery for you and a quick return to your "normal" life. (whatever that is :D)
Best wishes to you.
vjh
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eyeamneone:
Congratulations on your two-week postie status!
There is no definite gauge for AN surgery recuperation as, not only are our bodies, healing abilities and level of nerve damage (if any) quite different, but I believe that even our attitudes and expectations can play a part in the healing process, for better or worse.
I had a relatively huge (4.5cm) AN removed (Retrosigmoid Approach) and, I'm pleased to report, I suffered no nerve damage (thanks to nerve monitoring and a very expert neurosurgeon). While I did lose my hearing on the 'tumor side', (pre-op) it only took me a few months to return to full function. I was given my doctors O.K. to drive just four weeks post-op and I was pretty much back to 'normal' within 6 weeks. I can tell you that it took close to 10 days for the effects of the anesthesia, steroids and other drugs to 'wear off' and I was weak from lying and sitting so much the 4 days I was hospitalized, so I needed a few weeks to get my strength back. Eventually, I did.
Now, 5 months 'out' (of surgery) I'm doing fine. They removed about 50% of the tumor with surgery and I underwent 26 'fractionalized' (low-dose) radiation treatments in September and October, intended to kill the tumor DNA so it won't grow back. I'll have a 'fresh' MRI scan in a month or so to establish a baseline to check against future MRI scans I'll be getting every 6 months for the next few years to keep tabs on the tumor and be alerted if it does ever begin to re-grow, which I've been repeatedly assured by both my neurosurgeon and oncology radiologist is a very remote possibility. We'll see.
Meanwhile, at two weeks post-op, you sound as if you're doing quite well. As all have said; don't overdo it and don't compare your recovery to anyone else, whether good or not-so-good. There are some unfortunate AN surgery outcomes related on this board but some AN patients have done even better than I have, in terms of the speed and totality of their recovery. I'm not exactly the same as I was pre-surgery, but I'm darn close. My wife estimates that I'm about 95% 'back to normal'. I tend to agree. However, this is 20 weeks (5 months) after surgery and with no immediate nerve problems, post-op.
As a native New Yorker (born and raised on Long Island) I was impatient to get back to where I was before I ever heard of an Acoustic Neuroma. I've managed to just about get there - in under six months. However, even with having excellent health pre-op (well, except for that 'thing' in my head), no nerve damage during surgery and a vigorous and determined self-rehab 'program', post-op, to regain my balance, I'm still not and likely never will be exactly the same as I was a year ago, before the AN symptoms made themselves glaringly apparent. I doubt any AN patient ever is. AN surgery is major surgery and it always takes a toll, before: as the growing tumor presses on vital nerves, and after, as our bodies try to recuperate from having our skull cut open and 'disturbed' in a place where crucial nerves reside and where any disturbance is magnified and usually has long-lasting effects.
We survived that surgery and, I believe, you are well on your way to complete recovery. As others have stated and I'll echo: most post-op 'issues' resolve themselves in time. Knowing that, I trust you'll be heartened as your recuperation continues.
Now, get some rest. ;)
Jim
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Thanks for all the well wishes. So far the two main things I'm dealing with are walking and depression. Actually, it's more of an anxiety. I'm getting the panic attacks that I was getting before the surgery. For some odd reason I keep thinking that I should be able to walk without any problems by now. I think I'm expecting way too much right now.
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please tell your doctor about the anxiety and depression. it is real. they can help with medicine. it saved my life. patti
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It will get better but two weeks is too soon. Just Rest and let the incision site heal. Laying flat and watching out for anything out of the ordinary is important for now. I remember just wanting the days to pass quickly so I played a lot of PS2 and just watched a great deal of television. Rent movies and create a diversion. I would try to avoid work and driving for maybe six weeks if possible. Take time to perform vestibular exercises. I have a link that might help. I will look for that. Eat right and drink plenty of fresh spring water. You may be depressed because you're thinking that this is the best it's gonna get but it isn't. It's difficult to put a time frame on recovering but the nurses in the hospital told me to allow one week of recovery for each day spent in the hospital. I guess four to six weeks but complete healing happens slowly over months. With proper rest for the first few weeks then the proper exercises little by little you will notice small noticable improvments.
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FlyersFan68 you are right on! A day out of the hospital my brother brought over Tiger Woods 2007 and I've been playing that on the PS2 since then. I'm also watching tons of television. I think my depression comes mainly from thinking that this is the best it's going to be and what the future will bring for me. Then the anxiety starts and it seems to snowball. I'm only going on 3 weeks post surgery so I guess I'm doing pretty well. All you guys posting stuff helps me out so much! It's really positive to read other people's stories and to get good feedback from everyone.