Newbie--scheduled for surgery in October 2008

[leapyrtwins]

D -

no, not sure, maybe.

My neurotologist actually gave me a printed page of vestibular experiences to do pre op and had me continue them post op.  He told me that he has patients start doing the exercises pre op because it makes it easier for them to do them post op when their balance is generally much worse.  I found this to be very true.  The exercises were definitely harder to do post op, but since I was familiar with them, I at least had that in my favor.  The exercises really helped me regain my balance.

Post op my doc also gave me the option of being referred to a PT (physical therapist), but I didn't think I needed it so I declined.  My balance hasn't been a big issue since a few months post op.  I still have a small issue when I'm overtired or stressed; I think I always will.

BTW (by the way), I tend to use IMO a lot - since it says me from having to type the disclaimer "I'm not a doctor, but" or "here's my two cents worth".

Here are two abbreviations you won't see in the link Phyl gave you.  SSD (single-sided deaf) and BAHA (bone-attached hearing aid).  Sometimes we have a language all our own 

Jan

[Debbi]

Jan is correct that anything you practice doing pre-surgery will be somewhat easier to do post surgery.  I was a menace with my pilates and bosu balls pre surgery - and I do think it made it easier to creep tentatively aboard after I can home from the hospital. 

Like Jan, I haven't needed any vestibular rehab.  My balance was pretty good even at the hospital.  I do get wobbly sometimes, usually when I am tired or, as Jan said, stressed.  Otherwise, though, I am fine.  Just as an aside,  I have given up my dream of walking the high-wire...   And I think my balance beam days may be over too!  hahaha

Debbi

[dufreyne]

Thanks everyone.  I called to try to set up the Vestibular rehab now so that it is all set post-op.  A couple of physical therapists with my health insurance 'specialize' in vestibular rehab, but I don't think they have anything fancy.  I left a message.  We'll see. 

This may sound funny, but has anyone tried Yoga post-op?  I've heard this can be helpful for balance, but have never tried it.  Any thoughts?

[Kaybo]

Dufreyne~
Arushi did a long, WONDERFUL post on yoga - look it up or ask her.  Also, the new Wii Fit works wonders...and the kids like it too!!   

K

[leapyrtwins]

D -

Arushi did do a great post on yoga. 

Here's the link http://anausa.org/forum/index.php?topic=7668.0

Jan

[dufreyne]

Thanks for all the tips about Yoga.  Maybe it wasn't such a strange idea afterall.  They have a local Yoga studio downtown that I think I'll check out after surgery.

Jan:  Thanks for the link--very nice overview.  I think I need to read "Yoga for Dummies" first to get up to speed on the lingo.

Kaybo:  I do hava a Wii, but haven's seen the Wii Fit game.  Sounds like it may be worth checking out.  Thanks.

Debbi:  It's funny you should mention 'walking the highwire'.  I recently took some pics walking on a high metal beam at a local park and balancing well.  I figured that this may be the last time I'll try that.

Andrea in SLC:  I'm very suprised they misdiagnosed you with Ramsay-Hunt syndrome for so long.  That generally manifests itself with vesicles (small, fluid-filled lesions) on the ear canal or eardrum, in addition to a Bell's Palsy type scenario.  Especially with the concurrent balance issue, that seems strange.  Glad it was finally diagnosed properly. 

Arushi:  Thanks for the tip about the Vestibular Rehab.  I like the sound of your setup.  I don't think they have anything that fancy here, but I will now know what to press them about.

D--

[Omaschwannoma]

Arushi:  Thanks for the tip about the Vestibular Rehab.  I like the sound of your setup.  I don't think they have anything that fancy here, but I will now know what to press them about.
  Anytime!

Regarding Yoga, you don't have to know one little bit of the language, postures, etc.  Start in a beginners class, make sure they know you have/had tumor and have balance issues. 

I find it difficult to perform yoga in dim light (like most studios around here use) and/or some have carpeting (along with yoga mat on top of that makes for soft surface) more challenging here too.  If the studio uses dim light ask that you be placed at the nearest light source or maybe they will turn up the light for you. 

If I were teaching a class to you I would put you in bright light, hard floor and not expect you to "learn" to balance in these challenging situations as you are to relax in the posture at the same time holding strong and if you are fighting to keep your balance this can create too much stress. 

Hope you find Yoga can help you if not for balance of the bones and muscles then balance of the mind/spirit!

[andrea in slc]

Hi Dufreyne - they thought it was an atypical presentation of Ramsay-Hunt, and since the idiot radiologist somehow missed the tumor on the MRI, they had no reason to change their mind. Thankfully my ENT went with his gut feeling and had me get another one 18 months after the first one!

Good luck with your surgery and postop recovery! Hope it is as pain/irritation free as possible!

[MAlegant]

D,
Wii-fit, yes, definitely, so much fun and good for you too. How many things can you say that about?
M

[joebloggs]

Hi Dufreyne,

I'd definitely go the yoga post op if I were you.  That's my plan too - I've practiced yoga (off and on) for a few years and it wouldn't surprise me if that is one of the reasons my balance is really good despite the AN.  The neurotologist was surprised my balance was so good.  I'm not going to hit the yoga for a while after the surgery though, just because some of the postures, particularly the inverted ones, for me put a lot of pressure on my head and I don't want to do that until I'm all healed up! 

I'd also recommend a pair of MBT trainers (http://www.swissmasaius.com/).  I've had mine for about 6 months and again, I credit these with helping my balance.  The soles are curved and so even when you're standing still you're body and muscles are constantly compensating with the unsteadiness.  Also they're super comfortable!  Of course I'd probably not recommend them when you're just out of surgery because they'll make you even more wobbly - but shortly after that, I think they'd really help.

Good luck with everything

JoeB

[leapyrtwins]

Joe -

a colleague of mine has MBT trainers and, although she doesn't have balance issues, she absolutely loves them.

They're pretty pricey though, aren't they?  Do you think they're worth the price? 

Just curious because I've been contemplating buying a pair, but I'm not sure I want to put out the money.

Jan

[joebloggs]

Hi Jan,

Yeah, they are pretty pricey - I'd still recommend them though.  I have to spend a lot of time on my feet at work and I was starting to get knee niggles and back niggles - but since I've got them, nothing...I think I've also got stronger through wearing them.  I would say though, definitely try them on and see how you get on - don't just buy a pair on the internet.  The fit is slightly different than normal shoes, so best to try them on to get the right size!  Or you could try them on then buy a cheaper pair on ebay or something once you know your size!  I've just seen they have boots now - mmm....can I save up for them as well as my trainers - that is the question!

JoeB

[leapyrtwins]

JoeB -

thanks for the feedback.  Once I'm done paying off my daughter's Uggs, I'll look into a pair of trainers for myself 

Jan

[wendysig]

Hi Dufreyne,

Sorry I somehow missed this thread and wanted to welcome you to our group.  In checking the AN calendar I noticed you haven't posted your surgery date, so if it hasn't taken place yet you have my best wishes for a wonderful outcome  and if it has, I wish you an uneventful and speedy recovery.  I hope you will continue to post questions and answers to this forum, since as a doctor  and you can provide  very unique and nteresting insights to us based on your medical knowledge and of course, we are all here to help and support you.

Best wishes,
Wendy

[dufreyne]

Everyone:

I just wanted to take this opportunity to thank you for all of the support and words of wisdom.  I have read, and re-read your posts multiple times and it has given me great comfort to know that you all have experienced similar events as my own.  Your willingness to share your ups and downs as well as pieces of advice have been greatly appreciated.  I will try to remember this as I go through this uncertain time.  Thank you again and I'll post again (when I'm able) after the surgery.

Dufreyne--