Author Topic: 1 1/2 year Post op update  (Read 5867 times)

QRM

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1 1/2 year Post op update
« on: September 19, 2010, 10:59:27 pm »
Just dropping in to give an update, just had my first post op MRI it should have been done 6 months ago, but been doing the head in the sand trick. Anyway results came back all OK no sign of the tumour!

Those of you who have just received the bad news, my Doc summed it up very nicely, first off brain tumour sounds grim, it's actually a non cancerous growth off the inside of the ear. He said I should look at it like a broken leg, you will be scuppered for a few months, but will bounce back. There will be a few issues but these will lessen over time.  

I remember reading all past posts and people kept talking about "issues" and skirted around what they really meant, that terrified me.  So heres a bullet point of Pros and Cons after surgery

Cons:

As you are now dependent on your eyes for balance, so discos, cinemas, dark alleys etc. are a bit of challenge ( like walking on a water bed) , I even found walking on small black and white tiles and stationary escalators  gives me the wobbles. So if you want to impress the ladies try your cooking prowess rather than the dance moves.  

Noisy rooms, any space with background noise, music, people talking, aircon etc are a real pain, very difficult to understand what people are saying. I normally just tell the people on my deaf side, not to be offended if I totally ignore them. Recently I was a ladies coffee morning and we all had to stick name tags on, I wrote deaf under my name, which was a good conversation starter and everyone quickly figured out to stand on my left.

Lift lobby, those "pinging" lifts without an indicator light major pain in the butt, just have stand in the middle like a tennis pro waiting for the serve.  

Every time you get a runny nose, ear stuffiness, headache its instant panic, you end up running around the house hands flailing shouting "Brian fluid leak" or its growing back like an uncontrolled soufflé. I just had a head cold last week and was convinced I could feel a walnut growing,  but the MRI just confirmed it was all in my head.

Skiing at night and in white-out condition same problem as discos above. Driving etc not effected.

Pros:

Yup there are some, my golf has improved! maybe because I don't suddenly look up to see where the ball has gone or my stance is changed for better balance ?

I can now read, write and face backwards in a moving car, before revolving restaurant used to make me feel green.

When I explained to the tax man I had a tumour, he let me off a big fine for getting my tax submission wrong, ( It was the daft accountants fault)

If you ever need a excuse to buy a home theater system with full tactile transducer setup, this is it. Explain to partner the cinema issues above.  You need the butt shakers as your hearing is a bit iffy. While you think a single speaker system is all you need these five speaker set up works well, as you turn your head sound is coming from all around you, admittedly in mono.

When you sleep in a noisy hotel, plane, boat etc you just sleep on your good ear in total silence.

For some people, me included Tinnitus will always be there, turn it into an advantage, mine sounds like crickets in a tropical rain forest, so when you are sitting at some dull meeting cover your good ear and imagine you are on that tropical paradise island.  

Thats about it, I will check in every now and then and if any one is visiting Singapore drop me a line, we can compare scars, mine is almost invisible and I have a buzz hair cut using a zero setting.

Thanks to all the regular here who work tirelessly helping all those who find themselves in the same boat, which is getting bigger and bigger should have a word with Noah to see if we can borrow his.

Love to the LA-Aners

Take care all  


Rick



« Last Edit: September 21, 2010, 09:02:24 pm by QRM »
2.5 cm x 1.1 cm AN 30 Oct 08  Singapore Gleneagles Hosp.
Translab on  29 Jan 09 Dr. Friedman & Dr. Schwartz of HEI
Surgery a success!! had wonky head for a while and odd tastes
Everyday things are improving and getting back to normal.

CHD63

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Re: 1 1/2 year Post op update
« Reply #1 on: September 20, 2010, 08:14:32 am »
Rick .....

Well said ..... and glad you are doing so well.  Singapore ...... hmmmmmmmmmm.  Sounds exciting!

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

cindyj

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Re: 1 1/2 year Post op update
« Reply #2 on: September 20, 2010, 08:18:15 am »
Well, hello, Rick!  So good to hear from you!  Nice summing up of the "issues" of AN treatment...I agree with you...funny about the disco ball - my husband & I have taken up dancing this year.  The first couple of times we were in the room w/ the disco ball, I didn't think I'd make it, but persistence paid off and I love it now!  I suppose a "lift lobbie" is an elevator?

Glad to know you're doing well - hope your family is also!  Do check in w/ us every once in awhile and let us know how things are over there.  My son is hoping to do a semester in Japan next year - I'll have him shout out to you :D

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

kenneth_k

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Re: 1 1/2 year Post op update
« Reply #3 on: September 20, 2010, 11:55:41 am »
Thanks for the update.....
I enjoy reading these update and benchmark my own recovery. Your descriptions sure sound familiar. I guess that makes us pretty "normal" ;)

Jim Scott

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Re: 1 1/2 year Post op update
« Reply #4 on: September 20, 2010, 02:21:27 pm »
Rick ~

Congratulations on your recovery and thanks for a droll but accurate catalog of the pros and cons of being a post-op, SSD acoustic neuroma patient.  Well done - and actually quite informative.  :)

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.

leapyrtwins

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Re: 1 1/2 year Post op update
« Reply #5 on: September 21, 2010, 08:00:13 am »
Great to hear from you Rick and I'm happy things are going well.

Thanks for the udpate.  Love your commentary - and have to say I could relate to most of it at one point or another.

Don't be a stranger,

Jan
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

ksiwek

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Re: 1 1/2 year Post op update
« Reply #6 on: October 05, 2010, 07:09:56 pm »
Rick,

I am a recent House alum.  They did some write ups on my AN story for the clinic.  As such, I met with their PR manager several times.  She mentioned someone who was now a good golfer and a PGA pro...is that you?  I am hoping that my golf game will drastically improve when I try again next spring/summer  ;D

Nonetheless, I love your recap.  I always like reading people's post op updates.  They reduce the anxiety of feeling like you must be the only one experiencing certain things ;D

All the best to you,
Kris

Translab 6/4/10 for 4+ cm left AN.  Drs Friedman and Schwartz at HEI saved my life!
BAHA surgery on 10/7/10 with Dr Battista of Chicago Ear Institute (Oticon Ponto Pro)

QRM

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Re: 1 1/2 year Post op update
« Reply #7 on: October 13, 2010, 06:57:15 pm »
Kris,

LOL I wish my golf did improve that much! I was a very grim golfer before, I have improved to the point where I can be called just a grim golfer now. Put it this way I am on first name terms with those guys that fish out all the balls from the lakes and sell them back to you.

All the best to you and family too,

Rick
2.5 cm x 1.1 cm AN 30 Oct 08  Singapore Gleneagles Hosp.
Translab on  29 Jan 09 Dr. Friedman & Dr. Schwartz of HEI
Surgery a success!! had wonky head for a while and odd tastes
Everyday things are improving and getting back to normal.

mandy721

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Re: 1 1/2 year Post op update
« Reply #8 on: October 13, 2010, 11:04:51 pm »
Rick,
It sounds like you are doing well, but reading how your doctor compared  surgery for an acoustic neuroma to a broken leg makes me shudder.  When one's AN is pushing on the brain stem, and encapuslating the facial nerve, in no way can it be compared to setting a broken leg.  That type of analogy does a tremendous disservice to those AN patients who don't bounce back and suffer with long term complications. 
Husband diagnosed 5/30/09 with 3.2cm right AN
Surgery at  Columbia Presbyterian 8/4/09
Platinum eye weight implant - 8/17/09
17 days in hospital and rehab
SSD, facial weakness, some tinnitus, headaches , balance and eye problems

QRM

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Re: 1 1/2 year Post op update
« Reply #9 on: October 14, 2010, 02:34:50 am »
Rick,
It sounds like you are doing well, but reading how your doctor compared  surgery for an acoustic neuroma to a broken leg makes me shudder.  When one's AN is pushing on the brain stem, and encapuslating the facial nerve, in no way can it be compared to setting a broken leg.  That type of analogy does a tremendous . 

You should have heard what the local Doc first said about CK treatment, "Just walk in stick a hat on and 40 minutes later you can be off for a nice lunch" 

The way I would look at it, judging from his body language and general bedside manners, I am pretty sure the Doc had absolutely no intention to antagonize those AN patients who don't bounce back and suffer with long term complications. If anything he was doing the polar opposite trying to soften the blow, so I cant shoot the guy down for that.
2.5 cm x 1.1 cm AN 30 Oct 08  Singapore Gleneagles Hosp.
Translab on  29 Jan 09 Dr. Friedman & Dr. Schwartz of HEI
Surgery a success!! had wonky head for a while and odd tastes
Everyday things are improving and getting back to normal.

ppearl214

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Re: 1 1/2 year Post op update
« Reply #10 on: October 14, 2010, 05:15:02 am »
You should have heard what the local Doc first said about CK treatment, "Just walk in stick a hat on and 40 minutes later you can be off for a nice lunch"  

Rick,

Actually, my treatments were approx 45 mins and I did go to lunch AND shopping immediately after my CK treatments :)

Thrilled to hear you are doing well.... sending continued wellness wishes to you and please keep us updated on how you are doing!

Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"