Author Topic: Can I mitigate my balance issues pre-op?  (Read 11391 times)

leapyrtwins

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Re: Can I mitigate my balance issues pre-op?
« Reply #15 on: January 07, 2010, 07:58:27 pm »
CF -

I agree with Neal, Pooter, Jim, etc., etc., etc., about your justification and procrastination - and at this point it appears that you agree with all of us also - although I have to say that your latest posts are confusing me a lot.  Then again, it might be all the snow I'm shoveling this evening  :P

Anyway, what I think you really need is a good doctor, who will not only be honest with you, but will answer all the questions you have been posing to us.

IMO you need a doctor who does both radiation and surgery and will NOT make your decision for you or tell you what to do.

I am a certified control freak, and I'm seeing some of the signs in you when it comes to making a decision.  It's great to educate yourself - and talking to more doctors won't hurt - but ultimately you need to resign yourself to the fact that you need treatment - and probably sooner rather than later.

You are fortunate enough to have hearing in both ears - don't let that go lightly.  I'll be perfectly honest with you, recovery from AN surgery is no picnic, but lots of us have lived through it and still have the "good life" you refer to.  The only thing presently lacking in my "good life" is the hearing in my left ear and as much as I adore my BAHA, truth be told I'd much rather have normal hearing in both ears.  I didn't have that choice going into treatment - you do, take advantage of that.  Hearing is something we take for granted, until it's gone.

Like Brian & Jim, I don't want to debate, question your decision, or tell you that you are wrong - and I too will respect and support whatever decision you make - but as one who's been there before you - and at about the same age - I can't read your posts without expressing my opinion.

I have some wonderful vestibular exercises given to me by my neurotologist that may help you with your balance.  He has his patients do these exercises both pre op and post op and they really help with balance.  If you PM me your email address, I'll be happy to send them to you.

Best,

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

CF

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Re: Can I mitigate my balance issues pre-op?
« Reply #16 on: January 07, 2010, 09:18:10 pm »
 :)
(big smile)

TP

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Re: Can I mitigate my balance issues pre-op?
« Reply #17 on: January 08, 2010, 07:00:29 am »
CF, I am with Jan here, I miss my hearing. I work in the IT business talking (thank goodness I work from home) on the phone all day with folks from all over the world. My hearing loss has impacted me a lot more than I want to admit. I finally volunteered to direct a Christmas play at church this past season. It was so difficult being totally deaf on one side. Having folks come up to you talking to your deaf ear, having to wear a ear transmitter in your good ear which means I can't hear anyone who walked up to talk to me. I enjoyed the opportunity but will more than likely not volunteer to do that again.

Also, I miss my smile and suffered from double vision after my AN was removed. My facial paralysis only improved slightly, I don't have a smile and I had to have double vision surgery in order to see correctly. Bottom line, I think because I was physically in good shape I did not notice some of the other issues going on in my body. Finally when I was having a hard time hearing as well as starting to suffer from balance issues that is when I insisted to my Dr something was wrong and they did a brain MRI and my tumor was over 4 cm. I had been treated for over a year with neck pain but no one ever thought of doing a brain MRI. In my situation I had to have surgery quickly as the tumor was on my brain stem and cutting off my brain ventricle's causing big problems. In my situation, I went into surgery without very much information. I did get two of my dr friends (I've known them since they were kids) input and they both felt due to the location and size of the tumor I needed surgery.

I am not one to have regrets or second guess my decisions but I do believe having read a lot of posts that when ANs are removed at a smaller state there are fewer complications. However, CF this is your decision and we are here to give you some options to think about... 

 
4+cmm left retromastoid of cerebellopontine angle tumor removed 6/5/06; Dr. Eric Gabriel, St. Vincents, Jacksonville, FL
Left ear hearing loss, left eye gold weight, facial paralysis; 48 year old female. Dr. Khuddas - my hero - corrected my double vision

CF

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Re: Can I mitigate my balance issues pre-op?
« Reply #18 on: January 08, 2010, 09:17:10 am »
Nice, TP ..... thanks very much. Makes a lot of sense and gives me encouragement.

CF

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Re: Can I mitigate my balance issues pre-op?
« Reply #19 on: January 08, 2010, 09:19:13 am »
FYI: My 48 hrs of apparent indecisiveness, procrastination, or deliberation (whatever semantic description works for you  ;))  are over. My decision has been made and I'm going for the gold, ie., the operation .... sooner rather than later. You can know this is final cuz I told my wife  :D.

Three factors pushed me over the hump:

1. Driving home last night was practically the drive from hell. Maybe cuz it was late, maybe cuz I cried the first 4 minutes or so into the drive (and this swelled my brain), or maybe cuz it was dark out. I felt like I needed to pull over to get a grip. I felt fearful. I felt like my imbalance issues had just gotten worse (and therefore the key premise of my proposed "watch and wait" had been proven wrong .... despite Dr. Radiaion's firm advisement it would not get worse. A little ticked, a little worried he will be the "assistant doc" on surgery team, but glad he was wrong because his assertion contributed towards the trigger for my decision.

2. My wife told me she felt more comfortable having a small tumor removed, rather than a larger one.

3. Oh and of course based on the general consensus of all those who shared their opinions. Thanks again for your time and consideration.

Now just waiting for the scheduler to call me back.

lawmama

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Re: Can I mitigate my balance issues pre-op?
« Reply #20 on: January 08, 2010, 10:54:28 am »
CF,

Just make sure it is YOUR decision.  Honestly, there is probably no real difference between treatment in 1 month or 4 months from now (as you mentioned earlier in this topic).  I think what everyone was talking about was surgery in the next year vs. wait and watch indefinitely until you start to have problems (hearing loss, facial paralysis, etc).  I would hate to think you felt pushed into this decision in ANY way, and I don't think that was ever the intention of anyone on this board.  They just wanted you to make an informed decision and make sure you understood the consequences no matter what you decided.

I know how scary this all can be.  You said that you are a person that likes to analyze and weigh options.  Unfortunately, there are so many variables that you can't break this all down to a mathematical equation.  You have to know what you are willing to risk, what the odds are, and go with your gut.  I wish you the very best of luck!

Lyn

P.S.  My tumor was small, but because of the location I am SSD (and would have been SSD eventually no matter what option I had picked).  Although I am a little sad that the tumor took my hearing, SSD was my only complication.  I feel like I got my "best case scenario" and I know I will have a full and rich life- that is what is important to me!
9mm X 7mm tumor (left side), diagnosed 10-15-09
Retrosigmoid on 12-14-09 by Drs. Antonelli and Lewis (my heroes!)
Shands in Gainesville, FL
SSD, but no facial issues.  Mild tinnitus.

CF

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Re: Can I mitigate my balance issues pre-op?
« Reply #21 on: January 08, 2010, 11:34:06 am »
Lyn, thanks.

As an analyzer, I'm also a planner  ;D. The sooner I get this "project" started, the sooner it will be over. This will give me plenty of lead time for getting better for ...

... THE SUMMER!


Pooter

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Re: Can I mitigate my balance issues pre-op?
« Reply #22 on: January 08, 2010, 12:06:40 pm »
CF,

Congrats on coming to a descision.  Frankly, I was a bit worried that your 'analysis' was moving toward 'justification for w&w' and I thought you would have regretted trying to do that..  But, alas, you came to a decision and I'll back that decision 100% as will most of the others here.

In all liklihood, scheduling your surgery will mean you'll have surgery scheduled for at least a month from now.. So, the good news is that you can test your 'theory' about living the 'good life' for a month or so and see what happens after.. ;)

I'm confident that come summertime you'll be skipping through the meadows with the best of them...hehe

Congrats again!

Regards,
Brian
Diagnosed 4/10/08 - 3cm Right AN
12hr retrosig 5/8/08 w/Drs Vrabec and Trask in Houston, Tx
Some facial paralysis post-op but most movement is back, some tinitus.  SSD on right.
Story documented here:  http://briansbrainbooger.blogspot.com/

"I must be having fun all wrong!"  - Roger Creager

leapyrtwins

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Re: Can I mitigate my balance issues pre-op?
« Reply #23 on: January 08, 2010, 11:03:08 pm »
CF -

Pooter is right (I've said that too many time tonight, I fear  ::) ) but my concern wasn't that you would choose radiation over surgery or vice verse; my concern what that you were justifying W&W and I didn't want to see you possibly compromise your hearing due to your indecision.

Treatment choice is a personal choice as we always say here, but we all come to our decision in different ways.  Regardless of how we make our decision though, it's usually a very tough decision to make.

Don't be scared.  It sounds strangely simplistic but one of the things my neurotologist repeatedly told me prior to my surgery was "you'll be fine".  That simple phrase became my mantra and along with the confidence I had in him and my neurosurgeon it got me through surgery and post op recovery.

It sounds like you have a smart wife (then again most women are smart, right Pooter?  ;) ) and I'm sure she'll help you get through this.

There is life after an AN and I'm confident you'll be proof of that just like the rest of us here.

Best,

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

Pooter

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Re: Can I mitigate my balance issues pre-op?
« Reply #24 on: January 08, 2010, 11:12:26 pm »
Yup. Jenni is the smartest woman I know. :)

Brian
Diagnosed 4/10/08 - 3cm Right AN
12hr retrosig 5/8/08 w/Drs Vrabec and Trask in Houston, Tx
Some facial paralysis post-op but most movement is back, some tinitus.  SSD on right.
Story documented here:  http://briansbrainbooger.blogspot.com/

"I must be having fun all wrong!"  - Roger Creager

Jim Scott

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Re: Can I mitigate my balance issues pre-op?
« Reply #25 on: January 09, 2010, 01:47:36 pm »
Yup. Jenni is the smartest woman I know. :)

Ah, but then, you've never met my clever wife, the woman I affectionately call the lovely and gracious Tina.  Of course, I suspect just about all of the ladies we (guys) know are intelligent and gracious.  :)

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: Can I mitigate my balance issues pre-op?
« Reply #26 on: January 09, 2010, 04:11:59 pm »
Oh my gosh!!!  Jim Scott?  Are you hijacking threads with Pooter and me?

Thanks for joining us  ;)

Phyl is going to crack down hard on all 3 of us, though.  Watch out for that whip!!

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

Jim Scott

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Re: Can I mitigate my balance issues pre-op?
« Reply #27 on: January 09, 2010, 04:24:28 pm »
Jan ~

A moment of weakness.  I wanted to take the opportunity to post a word about my wife.  It was selfish and I do apologize.  Thread hijack now 'officially' over.  Really - I'm not kidding.

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.

 


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