Author Topic: Good day....Bad day  (Read 8051 times)

susierg

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Good day....Bad day
« on: October 21, 2012, 06:53:08 pm »
So I'm now 3 months post-op.  I've had balance issues ever since surgery.  While I was off work recovering and going to PT twice a week, my balance was slowly improving.  I would have a few good days and then a day when I couldn't get out of bed.  But all in all, felt like I was improving.  I went back to work after 8 weeks part time.  After 3 weeks back at work I slowly started increasing my hours to 6 or 7 hours a day.  Suddenly, my balance took a turn for the worse.  I made an appt with my ENT and He examined me.  Said my balance was relatively good....could stand on one foot, do the sobriety walk (as I call it), but when asked to just walk down the hall, I was all over the place.  He thought that maybe it was stress from work and just not resting enough.  I cut my hours back to 4-5 hours a day...still problems.  My husband and I decided to go away for the weekend to just get away and relax.  During that weekend away, my balance was great!  Walked up and down stairs, shopped, went fishing, even had a couple glasses of wine. 
I thought maybe I had turned the corner.  We get home that Sunday and about an hour later I start to feel wobbly again.  The next week at work was not too bad.  Still a little wobbly but I thought my balance was better.  Yesterday, I woke up around 8:00 feeling great!  I did some housework, went grocery shopping, cooked, .... like a normal Saturday.  I took a nap early afternoon then took it easy that night.  I woke up this morning anticipating another good day....but I could hardly walk down the hallway.  I pretty much stayed on the couch all day, except to do my vestibular exercises, and even after taking a nap, still really wobbly.  I just don't understand.  It's kinda like a cruel joke.  I have a really good day, then bam!  can't turn my head without getting dizzy.  Has anyone else been through this?  Good days and then major set backs?  I'm trying to be patient and positive, but its gettng really hard.
Ok.....pity party almost over.  Would just appreciate any input.
4mm AN diagnosed 8/2007.  Watch and wait for 5 years.  5/2012 grew to 7x4x4.
Mid Fossa 7/2012 at MD Anderson, Houston,Tx
SSD but still hoping it will return.

Kathleen_Mc

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Re: Good day....Bad day
« Reply #1 on: October 22, 2012, 01:56:03 am »
I always find I have a bad day after having a really good day and doing "too much", maybe you're just overdoing things on your good days.....try not to (although it's hard when you've things to do) I had my initial surgery  over twenty years ago and still find I have "bad days" however less frequently now then in the "early years" post op.
Kathleen
1st AN surgery @ age 23, 16 hours
Loss of 7-10th nerves
mulitple "plastic" repairs to compensate for effects of 7th nerve loss
tumor regrowth, monitored for a few years then surgically removed @ age 38 (of my choice, not medically necessary yet)

CHD63

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Re: Good day....Bad day
« Reply #2 on: October 22, 2012, 07:43:18 am »
susierg .....

You describe pretty much exactly how the few months after my first surgery were ..... and Kathleen is correct, you really do need to watch overdoing it on your good days.

I almost hate to say this, but to this day, I have significant issues walking down hallways ..... something about the diminishing perspective or patterned carpet/tile just does a number on my perception of where I am.  I will add that I have NO vestibular function on either side so hopefully I am worse than most single-sided AN patients.

I also have learned to stand and get my "bearings" before turning to walk in another direction, otherwise it is not pretty to watch.  You will learn to instinctively do these things, but your brain is still modifying/adjusting to the new input ..... some days better than others.

Thoughts and prayers.

Clarice
Right MVD for trigeminal neuralgia, 1994, Pittsburgh, PA
Left retrosigmoid 2.6 cm AN removal, February, 2008, Duke U
Tumor regrew to 1.3 cm in February, 2011
Translab AN removal, May, 2011 at HEI, Friedman & Schwartz
Oticon Ponto Pro abutment implant at same time; processor added August, 2011

kaykay

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Re: Good day....Bad day
« Reply #3 on: October 22, 2012, 10:40:06 am »
im the same with everyone else....i usually  had bad days after my good ones because i over did it. your body isnt going to jump back to presurgery form...it takes awhile....but....i can definietly say that now i am 3 years post op......my good days i really kick a$$ and i dont have a bad day afterwards....now the weather seems to bring on my bad days.....or lighting.......
so dont lose hope, it gets better!

susierg

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Re: Good day....Bad day
« Reply #4 on: October 22, 2012, 11:01:04 am »
Thanks everyone.....it is reassuring to know that others have this problem, yet a little overwhelming to think that this problem could go on for years.  Today is a little better than yesterday, though still very wobbly at work.  I saw on someone elses post that Yoga is good for balance.  I emailed a yoga instructor and she has agreed to see me to assess where i'm at and if she thinks she can help or not.  Don't really know how I will be able to do yoga poses when I have trouble just standing up..lol, but I'm willing to give anything a try.  Will let ya'll know how it works out. Maybe she has a class for older people and I can just stay in the back corner, ha!

Thanks again for responding...it really does help to talk about it with people that know what I'm talking about.  My husband and family try....but they just really have no  idea what I'm going through.  My husband's solution to everything is "you're over doint it...go lay down".  Which sometimes he's right, but when it starts from the minute I get out of bed....I don't want to go lay down.  Anyways, thanks again!

Susie
4mm AN diagnosed 8/2007.  Watch and wait for 5 years.  5/2012 grew to 7x4x4.
Mid Fossa 7/2012 at MD Anderson, Houston,Tx
SSD but still hoping it will return.

lrobie

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Re: Good day....Bad day
« Reply #5 on: October 22, 2012, 11:41:08 am »
Susie,

You are not alone.  We had our middle fossa surgeries around the same time and I'm still having balance issues.  When you refer to "good" day, what do you mean?  I feel like I don't have any good days.  I don't like driving anymore and it's very difficult for me to go into stores and not feel totally overwhelmed or overstimulated.

At least your husband tells you to go lay down.  My husband and son have no idea how I'm feeling even though I remind them from time to time.

I can't wait for the day that I can say I had a good day. 

Lisa
6/2009 7mm x 4mm  W&W
8/2011 9.5mm x 5mm
2/2012 UPMC Follow-up , slight growth
Surgery on 7/18/12 w/Drs. Friedman & Schwartz (mid-fossa)
www.caringbridge.org/visit/lisarobie

CHD63

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Re: Good day....Bad day
« Reply #6 on: October 22, 2012, 12:29:32 pm »
Susie .....

Just wanted to add something about yoga.  Initially I thought, "How can I do yoga when I cannot stand on one foot without falling over."  Then, through a friend, I found out about a yoga place that had a class called "chair yoga."  Not everything is done from sitting in a chair, but the chair is within grabbing range at all times.  I have been going once a week for six months and I can truthfully say, my balance has greatly improved.  It is a small class of mixed ages, but all have some reason why regular yoga would be a challenge and need the security of something to grab nearby.  Look for or do some online searching for a similar type of class near you ..... until you are able to move up to regular yoga.  I have heard that tai chi is also good for improving balance.  My yoga instructor actually has included some tai chi into our class and it is excellent.

Good luck.

Clarice
Right MVD for trigeminal neuralgia, 1994, Pittsburgh, PA
Left retrosigmoid 2.6 cm AN removal, February, 2008, Duke U
Tumor regrew to 1.3 cm in February, 2011
Translab AN removal, May, 2011 at HEI, Friedman & Schwartz
Oticon Ponto Pro abutment implant at same time; processor added August, 2011

Jim Scott

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Re: Good day....Bad day
« Reply #7 on: October 22, 2012, 02:02:11 pm »
Clarice ~

Your positive experience with 'chair yoga' demonstrates that balance can be improved, sometimes significantly, by focusing, via exercises such as yoga, that directly affect balance.  These exercises serve to retrain the brain to compensate as necessary, thus improving our ability to balance instinctively, without the need for constant awareness and the kind of physical 'adjustments' that can be tiring. 

I haven't tried yoga, with or without a chair, but I do a lot of walking and physical activities every day that have, over time, served to raise my ability to balance to a very acceptable level.  O.K., I won't be doing any tightrope walking in the near future but I no longer sway or veer to one side when I walk and I'm more than content with that - for now. 

Jim
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.

susierg

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Re: Good day....Bad day
« Reply #8 on: October 22, 2012, 05:14:40 pm »
Lisa, my definition of a good day is when I can get out of bed and walk down the hall without swaying.  I can actually do things like laundry, bending over, going to the grocery store without freaking out.  My husband even commented Saturday as we were walking through the parking lot that I was walking good.  I still always hold on to him and then the basket.  I really am not that comfortable driving, but I do it because I have to to get to work.  My bad days, I can't walk straight, when I turn my head, I feel like I have to wait for my eyes to catch up. I get dizzy brushing my teeth and cant touch my face or head without feeling dizzy as well.

Clarice I spoke with the Yoga instructor this afternoon and she was very nice.  She has worked with people that have had brain surgery before and recommended a private session as I would not be able to do a regular class at this point.  She spoke to me about exeercises for the brain and even exerises to help stimulate my thyroid to help me lose the excess weight I've gained since the surgery.  She did mention that I could use a mat or a chair depending on my comfort level.  She is working on a customized plan for me and thinks that two private sessions is all I will need, then I can do the exercises at home.  I'm really kina excited about it.  My first session is next Wednesday so I will let ya know how it goes.
4mm AN diagnosed 8/2007.  Watch and wait for 5 years.  5/2012 grew to 7x4x4.
Mid Fossa 7/2012 at MD Anderson, Houston,Tx
SSD but still hoping it will return.

kixit

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Re: Good day....Bad day
« Reply #9 on: October 29, 2012, 04:28:08 pm »
Hey peeps--

I just had my first vestibular therapy session today. It mostly consisted of evaluation with a few excercises. My gait is stiff (at the hips). I was told it's because I subconciously anticipate falling. When doing the standing on one foot thing, I was leaning/falling all over the place!

I told the therapist I know things will improve but  I then asked will I be 100% like before surgery.......she said--no that I will always have a vestibular issue to some degree  :-\ 
left side AN 9mm diagnosed 2/2012
SSD, loud tinnitis left ear
Translab 5/24/12
Baha surgery 8/1/2012 at UVA
Baha hook up 11/09/2012  : ) 

I am a happy camper : )

lrobie

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Re: Good day....Bad day
« Reply #10 on: October 31, 2012, 09:45:56 am »
I've been having hip and shoulder pain on the opposite side of surgery.  I was thinking it was either from that side of my body compensating or from doing the therapy with my eyes closed and quickly jerking or grabbing something before I fall.

Lisa
6/2009 7mm x 4mm  W&W
8/2011 9.5mm x 5mm
2/2012 UPMC Follow-up , slight growth
Surgery on 7/18/12 w/Drs. Friedman & Schwartz (mid-fossa)
www.caringbridge.org/visit/lisarobie

It is what it is

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Re: Good day....Bad day
« Reply #11 on: October 31, 2012, 09:34:56 pm »
Hi.  I had middle fossa surgery in August and I am also having good and bad days with balance.  I can not make sense of why the bad days are bad.  It doesn't always happen when I have been pushing myself too hard. 

karen 
.7cm, left side AN , Tinnitus, Hearing preserved, Middle Fossa 8/1/12 at HEI, Drs Friedman and Schwartz, Sharing your story is extremely helpful to me.

jenr

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Re: Good day....Bad day
« Reply #12 on: January 22, 2013, 11:55:08 am »
I had translab surgery in mid December. I am so relieved to hear that I'm not the only one with good days and bad days and that the bad days are always followed by a good one.  It has been 5 weeks to the day since my surgery.  I have started to work a couple days each week, but I find I get really tired after just a few hours.  Looking from my computer to the paper on my desk and then back again is terrible, as my eyes take a few seconds to adjust again. The day after a work day is always a bad one.
Everyone around me says they can't believe how good my recovery is going, but I am still really frustrated.  I am sure there are more good days than bad days, and I have to remember the progress I have made.  Now I know that my "bad days" are normal, thanks!
translab surgery Dec. 2012
AN left in place
SSD

Glenda

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Re: Good day....Bad day
« Reply #13 on: January 22, 2013, 04:26:58 pm »
Hello,

I too am glad to know there are others who have good and bad days.  I have just had about 5 days good and today was bad with more dizziness so it scared me.  I am 7 weeks since surgery and I do notice that I wear out easily.  I have started to do things around the house again which is great.  I have not gone back to work yet.  I see the Dr next week.  I notice that I have a problem like you Jenr as far as looking up from the computer and after reading and taking a moment to adjust.  I talked with them about it in therepy Monday.  I'm hoping if the Dr lets me go back to work that he will let me go part time at first since I tire so easily.  It scares me.  It's so good to have you all hear to know others understand....

Glenda
Diagnosed 5 mm AN  Jan 2008
Deep in IAC
June 2010 7 mm
July 2011 8.5 mm
July 2012 1.1 cm
Nov 28, 2012 Mid Fossa Surgery Wake Forest Baptist Hospital-Winston-Salem NC, Dr John Wilson and Dr Eric Oliver


SSD tinnitus dizziness

millie

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Re: Good day....Bad day
« Reply #14 on: January 22, 2013, 06:29:24 pm »
Yes, there are good and bad days...mostly, it is an adjustment.  I do notice I tire more quickly.  My surgery was translab October 17th.  I have been trying to do more-walk a mile,  go to the grocery store (not driving yet) and trek the aisles. I think it may be a little trickier if we are 65 but if we have always been healthy,  really active and independent it can be hard.  Folks on the forum said time is our friend.  Hope so.   Hang in there, everyone.