Author Topic: Just Registered As Member  (Read 12672 times)

jtd71465

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Re: Just Registered As Member
« Reply #15 on: March 16, 2007, 10:08:13 am »
The one thing I dislike about this board (two actually):

1)  Most of the time a post will occur and somewhere down the road it takes a turn.  If we really are here to help others based on our experiences it would be beneficial to keep the responses "on-track".  Look back on some "threads" you will see it happen time and time again.  I've just added to the insanity.....

2)  I found this site only because I had an AN.

Joe-
Right side AN removed 1/10/07 @ NYU Medical Center
Dr's Roland and Golfinos

FlyersFan68

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Re: Just Registered As Member
« Reply #16 on: March 16, 2007, 10:14:36 am »
On an earlier thread by a radio patient..."No one asks for this and there is no silver bullet". I always remember this!

FlyersFan68

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Re: Just Registered As Member
« Reply #17 on: March 16, 2007, 10:16:28 am »
Phyl, no heated debate only a spectrum of views.

FlyersFan68

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Re: Just Registered As Member
« Reply #18 on: March 16, 2007, 10:21:20 am »
Joe,
  This board needs all the members it can get. Share your story good or bad. There is always someone that will relate and appreciate anyhting you can offer.

nancyann

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Re: Just Registered As Member
« Reply #19 on: March 16, 2007, 10:45:35 am »
Joe,  When posts 'take a turn' it's just because we're human,  but eventually it gets back on track.
        Luckily, this kind of stuff doesn't bother me at all, I kind of enjoy the transgression at times.
        We're all in this together,  let's remember that.
        This forum can go wherever it wants, long as I have it to rely on.
        I truly believe the people here saved my life;
        having facial paralysis, etc., post surgery, I had thought about the big S, believe me, I got that far down,
        then I found this site & it truly is lifesaving & lifechanging.
Best wishes,  Nancy
2.2cm length x 1.7cm width x 1.3cm  depth
retrosigmoid 6/19/06
Gold weight 7/19/06, removed 3/07
lateral tarsel strip X3
T3 procedure 11/20/07
1.6 Gm platinum weight 7/10/08
lateral canthal sling 11/14/08
Jones tube insert right inner eye 2/27/09
right facial paralysis
good to go.

ppearl214

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Re: Just Registered As Member
« Reply #20 on: March 16, 2007, 11:52:45 am »
The one thing I dislike about this board (two actually):

1)  Most of the time a post will occur and somewhere down the road it takes a turn.  If we really are here to help others based on our experiences it would be beneficial to keep the responses "on-track".  Look back on some "threads" you will see it happen time and time again.  I've just added to the insanity.....

2)  I found this site only because I had an AN.

Joe-


Joe....

1.  Welcome to the wonderful world of the internet.  In my experience, you will have (what I deem as) lively dicussions, regardless of what discussion  boards you are on.....

2.  As did I and many here.. and thank gawd I found this site since it was everyone's inputs, regarding all treatment options, that helped me make the best, well-informed decision I could for me.  My hope is that everyone that contributes here with experiences and knowledge will be taken to heart by those newly diagnosed. No one said this journey was going to be an easy one but heck, if it wasn't for the ANA and this site, I know (for me) I would have been truly "lost" in trying to find what would work best for me.

It is great to have you here and hope that your continued contributions to the site will bring insight to others in our shoes.

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

ppearl214

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Re: Just Registered As Member
« Reply #21 on: March 16, 2007, 11:55:47 am »
Phyl, no heated debate only a spectrum of views.

Agreed :)  And that is what I love about this board... we can agree to disagree, but we do it respectfully, wtih all inputs highly respected :)  Let's go for a drink.  I think it's cocktail hour somewhere in the world and we can continue this over drinks and nachos (hold the jalapenos).  Your thoughts/inputs are highly regarded, just as is everyone elses :)

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

Omaschwannoma

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Re: Just Registered As Member
« Reply #22 on: March 16, 2007, 12:11:46 pm »
Very "spirited" conversation--love this when it happens!  Keeps the balance.

Oto, sorry to hear you're in "the club", but happy to hear you have reached out....you're still there aren't you?  Anyway, I had surgery two plus years ago.  Went the road most of us do as we are people who take action and through this we gather as much info as we can in order to make an INFORMED decision.  I too interviewed with neurosurgeons and Nuero-otologists, read as many articles as I could before making MY decision.  I researched surgery and radiowhatchamacallit's (sorry my thoughts went array), my husband and children leaned towards radiowhatchamacallit, I had no opinion/feelings at that point.  It was at my interview with another doctor and it was when I shook his hand, looking into his eyes that I knew, deep inside, my gut, whatever, that surgery will be MY WAY.  He knew I was having great difficulty in making my decision and his words, I will never forget, stay with me today, "There is no wrong decision here."  Love that!  There are pros and cons with both "ways".  Your decision will be based on information given from those of us that have the "experience".  You know what to do in your heart.  I along with all of us are here to support you and I look forward to hearing about your decision. 

Either way, you have the BEST location to recuperate in!  SIGH.  Went there on our honeymoon and made a return trip once more. 
1/05 Retrosigmoid 1.5cm AN left ear, SSD
2/08 Labyrinthectomy left ear 
Dr. Patrick Antonelli Shands at University of Florida, Gainesville, FL
12/09 diagnosis of semicircular canal dehiscence right ear

Omaschwannoma

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Re: Just Registered As Member
« Reply #23 on: March 16, 2007, 12:21:17 pm »
and one more thing OTO......  ;--)  I have been teaching yoga for over one year at our local fitness club.  I do have residual "issues" and have learned through this forum that other people have them too and have learned to accept them.  I have leaned on people hear and bent their ear with my "issues".  I would really love it if the doctors would use our post experiences to better their approach in educating their patients before and after their treatment, whatever that will be.  Seems they/people are afraid to "say the negative" as they may now have the same symptoms suddenly?!  WHaaaa. 

Hey, who's drinking!  I want in on that one Phyl, skip the jalapenos though--burp! 
1/05 Retrosigmoid 1.5cm AN left ear, SSD
2/08 Labyrinthectomy left ear 
Dr. Patrick Antonelli Shands at University of Florida, Gainesville, FL
12/09 diagnosis of semicircular canal dehiscence right ear

ppearl214

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Re: Just Registered As Member
« Reply #24 on: March 16, 2007, 12:24:40 pm »
and one more thing OTO......  ;--)  I have been teaching yoga for over one year at our local fitness club.  I do have residual "issues" and have learned through this forum that other people have them too and have learned to accept them.  I have leaned on people hear and bent their ear with my "issues".  I would really love it if the doctors would use our post experiences to better their approach in educating their patients before and after their treatment, whatever that will be.  Seems they/people are afraid to "say the negative" as they may now have the same symptoms suddenly?!  WHaaaa. 

Hey, who's drinking!  I want in on that one Phyl, skip the jalapenos though--burp! 

Ya know, in what I have noted in red in your quote, I've noted this to the Director of the ANA for possible discussions at the sympsium.  :) 

...and yes, skip the jalapenos..... stomach can't take it :)

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

ppearl214

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Re: Just Registered As Member
« Reply #25 on: March 16, 2007, 12:58:21 pm »
As you all can see, I am watching this thread VERY carefully.... I recommend everyone keep on track based on the opening post by one who just joined us here.  I remind everyone that we can agree to disagree and be respectful of it. 

Thank you all for your cooperation.

*cracks bullwhip* ;)

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

Jim'sWife

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Re: Just Registered As Member
« Reply #26 on: March 16, 2007, 02:08:42 pm »
Hi OTO (and all other members),

My husband was diagnosed two weeks ago with a right side AN, measuring 3.3 x 2.8 x 2.2 CM.  His only symptom is progressive reduction in hearing on that side.  Unfortunately, his left ear has no usable hearing (since childhood), which makes the decision of how to treat this even more challenging.  He is otherwise, a very healthy
63 yr old psychiatrist, who has no plans for retiring anytime soon.

We are researching very carefully what options exist.  He met with Dr. Sisti this week in NYC.  Basically, his recommendation was watchful waiting.  While this removes the burden of making a decision at this moment of what to do, it leaves me with many questions that I'm not sure can be answered.  For example:  Watchful waiting until . . . what? . . . Until his balance is affected or until he loses all of his hearing?  Until he has facial paralysis or trouble swallowing? 

I guess my frustration stems from the fact that you can read all the statistics you want.  However, statistics represent populations, not individuals.  The whole thing feels like such a roll of the dice, no matter what option you consider.  Does anyone have any words of wisdom or suggestions? Any help will be appreciated.

Linda

3.3 x 2.8 x 2.2 CM AN on right side, diagnosed 3/1/07
Have no hearing in left ear since childhood
Still researching treatment options

FlyersFan68

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Re: Just Registered As Member
« Reply #27 on: March 16, 2007, 02:13:01 pm »
[color=orange]Steve...

I really take exception to this comment of yours. It is simply untrue. I think microsurgery is a viable option; however, I do have a problem with doctors who needlessly funnel some patients in that direction by not telling them the truth and feeding them myths and half-truths. 
They believe in their own trade both radio & surgical.

 I would personally be very upset if after-the-fact I found out that a doctor had taken an option off the table that I may had otherwise chosen.
True, nobody can argue this!

As I have mentioned in many posts, I am not here to decide or tell an AN patient what to do. I am here as a fellow ANer and patient advocate.
Me too. 

I have received thank-yous from patients who otherwise would have not opted for radiotherapy. Therefore, I feel I am making a positive difference in the lives of some. That is what support groups are all about.
You may be making a positive difference but we shouldn't rush anyone to shut any doors too fast. There are pros and cons of each treatment and depending on numerous factors they should all be considered.

Our friend here from Aiea, HI, OTO, has an AN under 3cm and is leaning toward microsurgery. I support his decision 100%! I am not trying to persuade him to go the radiation route. He has received no email from me. I respect his decision.
No email from me either, I wouldn't do that. Decisions should be based upon research, patient & family preference and proper guidance from professionals and support groups combined.

Where I usually chime in is when I see erroneous information being told to patients by doctors, or when AN patients post incorrect statements concerning AN treatment and what they believe to be facts that in actuality are not. Since many people lurk and do not post, it is important that these errors are corrected.
Okay ![/color


Also, the idea that I lead patients to believe every surgery is a nightmare is totally bogus. We have many good outcomes posted here, and I am sincerely happy for all those who brave surgery and have good outcomes.
Understood!

By the same token, I am not going to sugarcoat the fact that surgery is invasive and carries with it longer recovery times and more serious side effects. Like it or not, those are the indisputable facts.
There are short & long term effects from both treatments!

Everything I post, I back up or can back up with empirical data gathered from peer-reviewed scholarly journals.
Yes and all literature should be viewed with a critical eye

I do my best not to provide links to biased webpages or self-serving articles.
Me Too. But remember, if someone has a great deal of interest in House or another leading institution that does surgery then we should provide that information too.

The bottom line is that no option is right for everyone, but all options are right for some. We need to help our fellow ANers know the truth, so they can make their own darn choices.
Of Course.

One last thing, it hurts me to see anyone suffer, especially needlessly. Having an AN is bad enough. People have their reasons for making their choices, so I don't judge them if they make choices that I probably would not have made.
I agree except where you state "that I probably would not have made that choice" sometimes certain remarks become offensive.

My mission is not to steer patients into radiotherapy. It is to help them make objective treatment choices, to pray with them, to encourage them, to cry with them, but mostly to support them.
I respect that.

Steve, I hope we have reached some kind of an understanding here. Btw, I support YOUR choice to have surgery, and I am glad that it was successful for you. You have a valuable story to share, and it does add in a positive way to this community, especially for those who want to have surgery. Take care..
We both have only good intentions  ...Take Care & Enjoy The Weekend!


FlyersFan68

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Re: Just Registered As Member
« Reply #28 on: March 16, 2007, 02:42:43 pm »
Linda,
  Regarding this very unique situation I would contact House (link provided). I am sure they have probably dealt with this before.

http://www.houseearclinic.com/

Omaschwannoma

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Re: Just Registered As Member
« Reply #29 on: March 17, 2007, 09:45:15 am »
To All "Just Diagnosed" ANers,

There is NO wrong decision.  Reading this thread all choices have been covered well.  Yes, it is up to the patient to decide and here is where the difficulty comes when the patient is of the thinking "I need to make the RIGHT choice in treatment."  There are NO wrong choices. 

Read all regarding your three options and sleep, sleep, sleep on this.  Interview doctors in all fields.  Then sleep, sleep, sleep on that.  Go with your decision knowing you did your very best, know you CAN/MIGHT have complications with recovery in any choice.  There are those that have very little issues after AN treatment and heal back to there old self as if nothing happened.  There are those that have issues after AN treatment and heal slowly but still move forward in their progress.  The worst choice is "no choice". 

Be sure you are not looking for someone else's choice to be your own, make sure your choice is "your choice".  Can't decide yet?  Sleep on it until you can, or write down your info, doctors views, and yours.  Maybe this can help.  There is no hurry--for most of us.  Remember WE do not have the answer to your decision, only information.  You cannot blame anyone if your outcome/treatment has complications, you cannot blame even yourself as you have or will read we all heal differently.  Yes, this does make your decision hard, but sleep, sleep, sleep on it until you are comfortable with your choice. 

When we read about someone else having the same issues it calms us knowing we are not alone.  Do not look to this forum to make your decisions only to educate you and to be "here" when and if you need to talk. 
1/05 Retrosigmoid 1.5cm AN left ear, SSD
2/08 Labyrinthectomy left ear 
Dr. Patrick Antonelli Shands at University of Florida, Gainesville, FL
12/09 diagnosis of semicircular canal dehiscence right ear

 


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