Author Topic: How long will I remain wacky?  (Read 6765 times)

TT

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How long will I remain wacky?
« on: December 01, 2006, 12:58:04 pm »
Greetings,

B.S. day was August 24th. I had all the normal side effects; however, the dizziness and just being unsteady on my feet isn't improving lately. It's much better that the first few weeks, but it just won't disappear for good. Some days are much worse that others and the only cure is sleep. I usually have a bad day after I've had a strenous the day before. I went back to my desk job after 4 weeks and haven't missed a day since. Last month I attended back to back trade shows which was too strenuous. One particular day, I felt like staying in the hotel room all day, but I couldn't, I had to work. I am trying to maintain my old lifestyle, but it's very difficult at times and I'm becoming impatient. I've been told to stop feeling sorry for myself. As most fellow ANer's know, that's easier said than done. My doctor says to continue the excercises which I'm not too good at, but I do them as much as possible. I see him again in three weeks, so I'll see if he has anything to ad. I'd like to know if I can expect these wacky feelings to end sometime in the future. I'm afraid I already know the answer...

T
2 cm AN - right side
Diagnosed 6/22/06
Retro. procedure performed on 8/24/06 / SSD
Dr. Peter Smith & Dr. Robt. Backer
St. Johns Hospital - St. Louis, Missouri

nancyann

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Re: How long will I remain wacky?
« Reply #1 on: December 01, 2006, 01:09:09 pm »
Hi T - My surgery was june 06, & I also still have balance issues, which cause lots of fatigue.   BE PATIENT WITH YOURSELF!!!!!
It takes awhile for the good side to aclimate to not having vestibular nerve on AN side.    I think it's great you were able to get back to work in 4 weeks!!!   It took me 2 months.    I'm going to balance therapy since October, & it is helping, but does take awhile.
In the meantime, I allow myself plenty of rest (My balance therapist said imagine someone who doesn't know how to drive a stick shift, & they're told to get in the car and drive!! - they'd be so tired after awhile. 

Every once in awhile I have a pity party of 1, but those times are getting fewer and fewer.

Best wishes, Nancy
2.2cm length x 1.7cm width x 1.3cm  depth
retrosigmoid 6/19/06
Gold weight 7/19/06, removed 3/07
lateral tarsel strip X3
T3 procedure 11/20/07
1.6 Gm platinum weight 7/10/08
lateral canthal sling 11/14/08
Jones tube insert right inner eye 2/27/09
2.4 Gm. Platinum chain 2017
right facial paralysis

Gennysmom

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Re: How long will I remain wacky?
« Reply #2 on: December 01, 2006, 02:00:50 pm »
July 5th was my day, and I'm in the same place as you.....but went back to work after 2 months and have a (mostly) desk job.  I do find that if I over-do it, I'm good for nothing for a couple days.  Normally walk pretty good, but always wacky (wonky) in the head and multiple moving objects send me into balance hell.  Not going to therapy, but trying to do lots of walking and exercises myself.  I'm not feeling sorry for myself, but am playing the frustrated as all heck and really wanting out of my head sometimes.  My doc says to expect the fatigue for a year, and always some level of wonky-headedness.  Sorry!!!!
3.1cm x 2.0cm x 2.1cm rt AN Translab 7/5/06
CSF leak 7/17/06 fixed by 8 day lumbar drain
Dr. Backous, Virgina Mason Seattle
12/26/07 started wearing TransEar

marjoryb

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Re: How long will I remain wacky?
« Reply #3 on: December 01, 2006, 02:47:56 pm »
My surgery was July 7th.   I'm still dizzy - I work on balance with my trainer and I walk as much as I can.   I used to run and haven't really been able to do that again although I gave it a try in a recent race.   I went back to work, but I'm in sales so I can pace myself and don't have to be anywhere unless I'm up to it.   My sales have suffered a bit because I'm reluctant to put myself back in front of people - my eye is not yet back to normal and my mouth is a bit skewed to the non-AN side when I "fast" talk.  SOOO, my confidence has waned.   Not only that - I don't feel as sharp and quick on the draw; my responses are slowed.    Part of that could be aging - I'm 56.

I'm really tired in the afternoon, but can sometimes take a little cat nap and usually feel refreshed after that. I'm on again, off again with sleeping at night.  One night I'll sleep straight through; the next night, I'm up every couple hours (on those occasions, it's a headache interruption)

My taste buds are lost on the AN side - I don't know if they'll come back or not - so eating is not as pleasurable as it once was.   It's a heck of a way to lose weight!

I think I'm doing about the same by comparison to you others who are about the same distance post -op.   Each of us has something a little different from the other, but I think it's all within the realm of normal .

Marjoryb


Boppie

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Re: How long will I remain wacky?
« Reply #4 on: December 01, 2006, 04:00:23 pm »
Marjory,  You sound as if you really are right on track.  I remember feeling that on again off again thing around 5-6 months. The taste bud thing came between 9 or 10 months.  Until then I wasn't sure I would ever enjoy my food again. 

Don't be fooled by the hype about youth and vigor.  Your are not old at 56.  You are coming into your zest years!  Besides we are the only ones who think we are wacky.  Others can't really see this in us.  They see us courageous!
 

HeadCase2

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Re: How long will I remain wacky?
« Reply #5 on: December 01, 2006, 04:12:33 pm »
TT,
  Things should continue to get better for you.  I had some of the same things going on that you do.  When I went back to work (desk job with lots of screen time), it was very fatiqueing.  By Friday evening I was fairly worn out, and the vestibular system seemed on overload.  That has lessened with more time.  I describe the vestibular issues as having less bandwidth to process vestibular information.  My balance is pretty good, I can run with no problems, etc., but my ability to visually track a lot of fast moving things is not as good as it used to be.  Two things seems to be going on that help.  My brain is continuing to compensate for only having one vestibular nerve, and over time I'm getting more used to it.
Regards,
 Rob   
1.5 X 1.0 cm AN- left side
Retrosigmoid 2/9/06
Duke Univ. Hospital

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TT

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Re: How long will I remain wacky?
« Reply #6 on: December 01, 2006, 04:21:50 pm »
These replies are really hitting home; I'm happy I posted. I can truly relate to the tasting concerns. I lost tast and smell some time ago due to unrelated sinus surgeries. I hope to fine a cure some day, but until then I still eat and and wonder if it's good. I'll occasionally ask my wife to taste my food in a nice restaurant to make sure it's as tasty as I think. Marjoryb, you were a senior while I was a freshamn during our school years. Babyboomers rock...

Have a great weekend everyone.
2 cm AN - right side
Diagnosed 6/22/06
Retro. procedure performed on 8/24/06 / SSD
Dr. Peter Smith & Dr. Robt. Backer
St. Johns Hospital - St. Louis, Missouri

Jim Scott

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Re: How long will I remain wacky?
« Reply #7 on: December 01, 2006, 05:32:57 pm »
TT:

As you can see from the various responses, we all heal differently.  It's obvious that some folks need more time than others - for a host of individual reasons.   I'm one of the 'lucky' ones that came out of AN surgery with only minor physical problems to deal with.  I 'fought' to regain my equilibrium and was determined to get back to 'normal' as quickly as posible.  Now, I'm not suggesting that 'thinking positive' can 'cure' real physical problems but I do believe that 'attitude' can help in speeding up recovery unless prior or post-op physical issues are too serious to overcome, which does happen. 

In my case, I entered into AN surgery in very good health and with the attitude that this 'AN thing' wasn't going to beat me.  Immediately post-op, in ICU, I was fatigued and listless but, within 24 hours, I was determined to be discharged as soon as feasible.  I was out of bed and sitting in a chair in 3 days and walking around the halls by my fourth day.  By Day 5, I was discharged.  At home, I basically slept and sat in a recliner and sort-of watched TV, although few programs interested me.  I had little appetite.  After about a week, the after-effects of the anesthesia finally wore off and I began to feel more like 'myself'.  A PT sent by the Visiting Nurses Association came and gave me some balance exercises to do.  As I had avoided ecercise for most of my adult life, I hated them - but I dutifully plugged away and the PT decided that I was doing so well, I wouldn't need further PT.  I was pleased and, as the weather was good (June in the northeast) I did as much outside walking as possible, which I enjoyed.  I felt better and stronger by the day and, four weeks after my surgery, I  asked my neurosurgeon for permission to drive, which he granted, provided I start out on back roads with my wife present - just in case.  I did that, had no problems and was driving on the interstate the next day and have been doing so, without incident, ever since.  We bought a new car in September and I've put about 3,000 miles on it, doing most of the driving, myself.

Sure, I occasionally have a moment where I feel 'wonky'- but it's rare and passes quickly.  My balance isn't quite what it was a year ago, before AN symptoms cropped up.  So what?   I walk just fine (no lurching, anymore), and I can go up and down steps without using a handrail, which was impossible for me six months ago.  I have no problems in the dark and never did, truth be told.  My sense of taste is slowly returning and I enjoy just being able to taste food and drink again.  My left-side hearing is gone for good - but I adjusted to that a long time ago and can live with it.  What choice do I really have?  What I'm saying is that while I consider myself blessed (the beneficiary of many prayers on my behalf) I've also done everything in my power to improve and get back to relative normalcy.  Now, I'm retired and that makes things easier, granted, but I'm also 2 months short of my 64th birthday, which is something I mention for context.   No matter what others may think, I do not consdider myself 'old' and I don't act that way.  I'm an Acoustic Neuroma patient - but I refuse to be a victim. 

This is not to minimize or dismiss the very real and often debilitating issues some AN patients have to endure, post-op, or how they cope.  I simply want to make the point that full recovery takes time that is sometimes measured in years but certainly in months, not weeks.  I maintain that keeping a positive attitude is beneficial to that recovery, even when it isn't going so well.  I've had pretty good success in my recovery, yes, but I've read other accounts on this board from those who have had terrible problems for many months, post-op. Some of them are truly inspirational in their refusal to give up or figuratively drown in negative emotions, even as they admit their frustrations and occasional periods of melancholy.  I am amazed by their resilience and determination to get better, no matter how long it takes or what they have to do.  True, this is a bit more difficult as we get older, but since we have less time left, the motivation to make the most of it should be stronger.   

I wish you a good recovery - and better days ahead.  :)


Jim[/color]



4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

marjoryb

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Re: How long will I remain wacky?
« Reply #8 on: December 01, 2006, 08:09:59 pm »
Jim,

You are so right about keeping a positive attitude and taking the bull by the horns.   It's the same mantra that would apply to anything we do.   

Marjoryb

P.S.  - My reference to aging in my earlier post was not to say that I am "old".    I'm planning on making it to the Smuckers jar group and have another 44 years to go.    My thought is that I am experiencing some symptoms post - op that are not necessarily related to the AN and to the surgery.   I certainly don't see as well as I did 20 years ago and although mentally I'm still sharp, there are many times I pick up the phone and forget who I'm calling or I walk out of the room to get something and forget what it is I'm after.   


Crazycat

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Re: How long will I remain wacky?
« Reply #9 on: December 01, 2006, 08:28:10 pm »
Well said Jim!!

 Ã‚  And yes T, you can expect the fatigue you're talking about to last a while, especially since you're still so close to your surgery date. I'm a year and two months out. The fatigue is there but not like it used to be. Here it is 8:53 pm and I just came back from jogging 3 miles - in the rain!
But I haven't stopped doing that for at least a year anyway and 6 solid years before surgery. When I came home from the hospital after basically being bedridden for three weeks, I couldn't drive or even walk two miles. It took a while to regenerate. My double vision subsided and my equilibrium gradually improved.
 Ã‚     What little money I earn I do so as a musician. This requires loading up a van and huffing around a ton of pro audio gear like an elephant great distances at times; unloading it, setting it up; blasting loud, obnoxious noise - with one good ear plug in my remaining ear - to a bunch of drunks, often in a smoky environment; and then, at the end of the night(1am) breaking the gear down, loading the van back up and driving home, sometimes 40 - 50 miles. Lots of fun! I've been doing it all my life.  For a while there, I was doing it while working a full time day job as well!The real fun part was having to do all that 4-5 times every week while I was getting sick with the A.N. Incredible experience! I thought I was going deaf from the music - WRONG!!!! Toward the end I was staggering around like a drunk and I don't drink. I realized though I was pretty tough and tenecious. Must have been all that exercise.
 Ã‚   There was one place we played at , 40 miles from home where we had to load and unload the gear up and down a huge flight of stairs. The club was built in the upper loft of a converted barn.
 Ã‚  I'd spend the day jogging - 5 miles a day at the time - then come home and lift weights. Jump in the van and drive to the club. I'd get there and have to move most of the gear up the stairs myself because the other guy had arthritis in his toes and was in great pain. Set the stuff up and play hard all night. Break it down and bring it all downstairs.  This is while the A.N. was developing and getting worse. I was seeing double at the time and was very lightheaded. Ahhhh The good ole days!

 Ã‚    I still get tired during the course of the day though, but not like before.

 Ã‚  Paul
« Last Edit: December 14, 2006, 04:57:08 am by Crazycat »
5cm x 5cm left-side A.N. partially removed via Middle Fossa 9/21/2005 @ Mass General. 
Compounded by hydrocephalus. Shunt installed 8/10/2005.
Dr. Fred Barker - Neurosurgeon and Dr. Michael McKenna - Neurotologist.

nancyann

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Re: How long will I remain wacky?
« Reply #10 on: December 02, 2006, 09:24:18 am »
Hi all: 

I loved Jim's response!!!  (the great thing about getting older is the wisdom that goes along with it!!).   I'm a firm believer in positive thinking - I have right sided facial paralysis, & it's taken me 5 months to come to grips with it.   If it wasn't for the positive & encouraging responses from everyone in the forum this would have been a much tougher road.

I don't know if anyone's heard of/read Masaru Emoto's   The True Power of Water Healing And Discovering Ourselves,  it has given me such a lift.  How positive thoughts can influence us soooo strongly.   I highly recommend this small yet powerful book to everyone.

Wishing everyone a great day, Nancy
« Last Edit: December 02, 2006, 09:44:59 am by nancyann »
2.2cm length x 1.7cm width x 1.3cm  depth
retrosigmoid 6/19/06
Gold weight 7/19/06, removed 3/07
lateral tarsel strip X3
T3 procedure 11/20/07
1.6 Gm platinum weight 7/10/08
lateral canthal sling 11/14/08
Jones tube insert right inner eye 2/27/09
2.4 Gm. Platinum chain 2017
right facial paralysis

Battyp

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Re: How long will I remain wacky?
« Reply #11 on: December 02, 2006, 12:43:10 pm »
TT I haven't read everyone else's reply.  You had your surgery exactly 366 days after mine.  I'm still not back to work but will say it wasn't until November/Decemeber I started noticing improvements.  If I over due things on day I pay for it the next.  Sounds like you're in the same boat.  It just takes time.  Something we all get tired of hearing but it's true.  I'm so much farther at this time than I was at the same time last year.  So hang in there, keep doing the exercises and rest when you can.  It really takes a year for your body to heal after something like this.  Mentally I think it takes longer to adjust to the new us.  Some days I handle it better than other days. 
I'm impressed you are back working like you are!  Don't forget to take some me time!

Patti UT

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Re: How long will I remain wacky?
« Reply #12 on: December 02, 2006, 12:59:19 pm »
TT,
   Some of us are just months post op, some years,  Read the GM thread for the real answer to your question. LOL


Patti UT
2cm Rt side  middle fossa  at University of Utah 9/29/04.
rt side deafness, dry eye, no taste, balance & congintive issues, headaches galore
7/9/09 diganosed with recurrent AN. Translab Jan 13 2010  Happy New Year