Post op improvement

[ironstorm]

I am new to the forum, probably should have been on a long time ago.  I am almost 3 months post op, Retro Translabyrinthing.  I had a 2cm sticky tumor, so because of that I lost tearing in my left eye and taste on the left side of my tongue.  I just wanted to share with everyone that there is another person who has survived a successful surgery.  I still have balance issues but I am hoping it will improve.

I do have 1 question if anyone can give me some insight.  It is about the balance issues.  I do get off balance somewhat.  I don't really loose balance that much, but the main thing that I feel all of the time is the feeling that I am on a roller coaster whenever I walk or move around quickly.  That is the best way i can describe it.  Is this feeling that the whole balance issue is all about?  Or is this something different?

[opp2]

I had compensated for the damage to my balance nerve prior to the surgery so post op I had few balance issues. I have read that your balance will eventually return with your functioning side compensating for the non functioning side. My surgeons suggested wii fit balance exercises to assist with the adaption to shall I say, single sided balance.

[Tod]

This is part of what the balance issue is about. We all have somewhat different experiences. The more you walk, the more you are active, the quicker your balance is likely to return. I am a year post-op and the other day I was successful in standing on one foot. At least, as long as my eyes were open...if I closed them, I would fall. But shucks, for a long time that would be the case on two feet.

A vestibular therapist can assist with coping mechanisms such was learning to identify local horizon lines that help you orient your body vertically.

My Wii helped me quite a bit as well.

Welcome to the forum!

-Tod

[Suu]

Hi Ironstorm

I'm 6mths post-op and have been referred to a neurophysiotherapist to help with my balance problem that got worse when I started using the Wii (sorry Tod  )

Don't rush things.  I did and I need to learn to slow back down while my right side learns to compensate.

The Wii will still be there for me later. 

Cheers,
Suu

[Tod]

Suu, nothing to apologize for, even with a smiley. That's why I said "it helped me"...I have no idea what will help or hurt someone else.

This stuff can be very confusing, can't it?

-Tod

[ironstorm]

It is very interesting how different everyone is after this surgery.  I still have not been able to drive yet.  That is really a pain because my wife has to drive me everywhere.  I am going to start this weekend to drive around the neighborhood to start getting used to it.  I also walk up and down the steps at home and work hoping that will help as well.  I don't have a wii but I do have a Playstation move. I never even thought about that.  I am going to try that too.  I am just so over this balance thing.  I am so ready to get back to normal, if that is even possible.

[CHD63]

Hi Ironstorm and welcome to our world .....

As you will notice, balance issues are common concerns we share.  You describe the "wonkyhead" of an acoustic neuroma patient perfectly.

Couple of things:

1)  Tod is absolutely right about the walking helping to regain your equilibrium more quickly ..... and Suu is right that it does take time.  I would urge you to find a short hallway in your home, if possible, and walk back and forth while looking from side to side and then again walking looking up and down.  Doing it in a hallway is a safe place to be able to catch yourself if you start to tilt sideways.  There are other vestibular exercises you can do (many good ones online) to speed up the process.

2)  You may be able to drive better than you think.  I was afraid to drive for a long time because I was so disoriented when walking.  When I finally did try it the first time, I was pleasantly surprised that I had virtually no problem.  I figured out it was because I was sitting still when driving and not trying to walk and maintain my balance at the same time.

Good luck and let us know how you are doing.

Clarice

[sunfish]

I've had significant balance/disequilibrium problems too, this year.  My neurosurgeon prescribed trental about 2.5 months ago.  It's a blood thinner type medication that is used for all sorts of things - most relevant to us is the fact that it has been successfully used to treat fibrosis after radiation treatment for cancer (breast cancer).  I abruptly improved about 2-3 weeks ago.  I went from stumbling and running into walls about 6 times a day to just about 1 time a day.  I have entire periods from 15 minutes to an hour long in which I don't notice these symptoms at all.  What a relief!!

Was it the trental? Would I have just compensated on my own without meds (good possibility)?  We'll probably never know for sure.  I go for my 1 year MRI re-check on Saturday, and get the results on Tuesday.  You can bet I'll be posting a complete update at that time.

ironstorm, it is very early since your surgery.  I had treatment last March, and my side effects crept up slowly, and have taken about 9 months to diminish.  I think there is an excellent chance your balance will recover completely, given some time.  Just keep moving, like others have suggested.

[Mark241]

Hello Ironstorm, and welcome. Like others have said, each of use have differant experiences with balance. My personal experience, was that balance improved a great deal in a couple months post-op. I still have slight issues when its' dark, not falling down or things like that, just a slight stumble here and there. The body is truly remarkable in compensating, best of luck, and a little patience.   

[ironstorm]

I would say that I am pretty lucky as far as my job.  I work in a warehouse and do a lot of walking, lifting, moving, climbing...etc.  That really helps a lot.  It is so strange though, because I don't fall over that much.  It is more like my head feels weird.  It is very hard to explain except that it is almost like being on a roller coaster all of the time.  I did try driving a couple of times, but it was kind of scary because whenever I had to look to the left or right to change lanes, or make turns, I would get that weird feeling in my head which would scare me because I would have to re-focus when I looked forward again.  It's not really that major but when I am driving, it is very nerve racking. 
Has anyone else lost their taste and/or tearing?  I don't hear that happening too much on the forums, at least that I can find.
Also, Thank you all very much for your support.  This forum really helps me a lot to get feedback and ideas on recovery and to know that I am not the only one. 

[CHD63]

It sounds like you might have gaze stabilization problems and/or nystagmus issues (I am not a doctor).  Perhaps you could find a trained vestibular therapist who could prescribe specific exercises tailored to your particular needs.  I assume you have discussed your ongoing "roller coaster ride" with your doctor.

I did not lose my sense of taste nor experience any tearing of my eye ..... but many on this forum have, so I hope they will reply soon.

Good luck.

Clarice

[Tod]

Ironstorm, The tearing loss is not uncommon. Many of us have to use artificial tears or adaptive surgeries (such as a gold weight) to protect and maintain their affected eye.  I have also lost partial taste...I can't taste most sugars.  Savory flavors (salts and the like) are not a problem. In order to experience any sensation of sweetness, I find I need a citrus backing to the sugar.

Chocolate fudge tastes like cocoa-flavored sand. Most ice cream tastes like cold salty grit. I can drink straight honey or maple syrup and little in the way significant sweetness. I will say it is not as bad as it was a year ago. But I still miss Krispy Kreme.

In terms of your driving, are you able to discern whether or not your weird feeling from turning your head is perhaps in part a focus problem? For several months post-surgery I suffered from double-vision which was a result of the nerves and muscles not being able to keep up with movement. I had surgery in mid-February and this was cleared up in mid-July, with the help of progressively weaker prisms being attached to the left lens of my glasses.

Also, part of my vestibular therapy involved learning to maintain my balance while walking by practicing turning my head left or right at specific points while training to maintaining my path on a straight line.

I hope this is helpful,

Tod

[mattsmum]

i have not had surgery, but radiation, but identify with your description of your balance issues. i do have some true rotatory vertigo, but more 'just' that constant world-in-motion feeling - and do bang against things a lot, though thankfully not fall that often. i am only driving short familiar journeys in the light - i too find the head turning a challenge and i am pretty hopeless in the dark. i have gaze stabilisation difficulties and am having vestib rehab aimed at improving this; i was advised by my therapist to try wii fit plus balance. and i am hopeless - but to be honest i would have been long befopre any of this came up!!
do pursue vestib rehab as i am told it has good results; and ironically quicker after surgery than radiation.

vikki

[ironstorm]

I did talk to the doctor about the "roller coaster" ride that I get and he just nodded and gave me a list of exercises to help.  I don't see double vision or have any type of vision problems, it is just a very weird feeling in my head that gives me butterflies in my stomach  I am able to do everything normally with no problems with falling over or anything, which is why I am wondering if this is something different than just typical "balance" problems.  I wish I could explain it better, but if someone out there has this same feeling, or maybe everyone who has this surgery has this same feeling and if it will ever go away.  I can deal with it, but it is just very annoying.  And again, thank you all for your support.  I love this forum. 

[ironstorm]

One other thing I wanted to add is the surgery they did was called Retro Translabyrinthing which the doctor said that this was a new type of removal that is designed to not only help keep hearing (kept about 30%) and minimally invasive.  Just thought I would throw that out there if anyone was interested in this type of new surgery they can bring that up to their doctor.