Author Topic: disco challenge  (Read 3862 times)

suz

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disco challenge
« on: November 02, 2010, 01:28:12 pm »
While I had some dissapointing news this week, I also had a surprising sign of great recovery from my 7/14/10 surgery. My husband and I attended an evening Bar Mitzvah party last weekend - in this part of the country they can be quite elaborate. Hubby peeked into the main room during cocktail hour and thought for sure I would not make it for more than a few minutes in there. Picture this, balance challenged friends: a huge dance floor composed of giant black and white checkerboard squares; disco ball lights  flashing above,AND in the front of the room, and generally dim lighting everywhere else. Also later, add in fult-tilt volume from the DJ; 50 unruly 13 year olds; and another 100 celebrating adults to the Ultimate Vestibular THerapy Challenge!!!!  He made me go in to just check it out before we HAD to go in. I'll tell you - two months ago I think I would have vomited &/or fallen over from the visual stimulation - er over-stimulation. But, amazingly - once I got my bearings I did just fine. Danced alot and had a great time. We even tried swing dancing again - something we love but haven't had the chance to do since surgery. Well, we won't win any contests, but I was happy to not fall over even with a few spins. My only lesson to learn of the evening was to remember to keep my eyes open at all times. Never realized that I have the tendency to close them at times while dancing; now that has a funny effect. Luckily there were so many people drinking too much that I probably didn't seem out of place stumbling and stepping on toes.
I really felt happy knowing that I could enjoy this party fully. A few months ago I would have been skeptical of that! I know not everyone is as fortunate to have this kind of recovery - but I thought it would be helpful to others to know that it is possible.
Tumor 1.8cms x 1.5 cms x .5 cm;partially removed 7/14/10 by Drs. Friedman & Schwartz of House Ear Clinic in LA. Moderate SS hearing loss.
Re-growth approximate 3 mm per year; GK planned for 12/2017.
Philadelphia, PA area

Jim Scott

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Re: disco challenge
« Reply #1 on: November 02, 2010, 02:26:53 pm »
Suz ~

Congratulations on the giant leap forward in your recovery!  Although we all recovery differently and at a diverse rate, your experience is encouraging and I thank you for sharing it with us.

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.

Lizard

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Re: disco challenge
« Reply #2 on: November 02, 2010, 02:28:31 pm »
Suz,
I'm so happy you were able to enjoy yourself, I know how overwhelming lights and noise can be post-op, but is great to hear that you were dancing!
Congrats!
Liz
Left AN 2.5CM,retrosigmoid 11/2008, second surgery to repair CSF leak. 
Headaches began immediately.  Dr. Ducic occipital nerve resection, December 2011!!!!!

"When you come to the end of your rope, tie a knot and hang on"
-Franklin D. Roosevelt

CHD63

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Re: disco challenge
« Reply #3 on: November 02, 2010, 02:29:52 pm »
Suz .....

Just the thought of what you described makes me disoriented.  I cannot say for others, but since I have no functioning vestibular nerves on either side, I would not even dare step into the room you described without hanging on to someone!   ::)  Because I still have hyperacusis, the loud music/noise alone would force me to retreat.

Sure glad your vestibular system has compensated and that you are doing so well.

I'm not quite sure what to make of your other disappointing news of the week.  It seems unusual without knowing any further information than what you described in your other thread.

Thoughts and prayers for answers.

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

moe

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Re: disco challenge
« Reply #4 on: November 02, 2010, 02:37:24 pm »
Great to see you getting stronger in the vestib/stimulation department!
A lot of us here don't know if we would even venture into a place like that!
Congrats on a good night out :)
Maureen
06/06-Translab 3x2.5 vascular L AN- MAMC,Tacoma WA
Facial nerve cut,reanastomosed.Tarsorrhaphy
11/06. Gold weight,tarsorrhaphy reversed
01/08- nerve transposition-(12/7) UW Hospital, Seattle
5/13/10 Gracilis flap surgery UW for smile restoration :)
11/10/10 BAHA 2/23/11 brow lift/canthoplasty

cindyj

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Re: disco challenge
« Reply #5 on: November 02, 2010, 07:59:35 pm »
Hey, Suz!  Good for you!  Aren't you glad you did it?  My husband & I started dancing (first time ever) earlier this year.  The first time they dimmed the lights and turned on the disco ball, I thought I wouldn't make it through a song, but I just ignored the feeling and have been having a ball ever since!  We mainly do West Coast Swing, so lot's of spins.  Yes, I too, feel and look a bit drunk, but I don't care!  Keep it up and have fun!

Cindy
rt side 1.5 cm - Translab on 11/07/08 Dr. Friedman & Dr. Schwartz of House Ear Institute,
feeling great!

"Life consists not in holding good cards, but in playing well those you do hold."  Josh Billings