Author Topic: I think I've changed my mind again!..........  (Read 2498 times)

sloxana

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I think I've changed my mind again!..........
« on: August 03, 2007, 04:25:37 pm »
Yesterday I went to see another doctor to get a second opinion on the best treatment for my AN.  I had heard that this doctor was pro-surgery so I was prepared with a lot of questions especially since another doctor last week was pro-radiation.  I must say I was pleasantly surprised when he did not try to sway me in either direction but very carefully and patiently explained all of the options to me (even the wait & see).  He even wants me to see another radiologist at Vandy before I decide.  Also, he is sending me for a balance test (anybody had one of those?) since my vertigo has gotten much worse this past week.  He said that I needed to weigh the pros and cons of each treatment and decide which one was best for me.  He seemed impressed that I had done my research on the different types of surgical procedures and the different types of radiation out there.  (I got a lot of my info from you guys! Thanks everyone!  :) )

I still don't know what I've decided to do.  Last week I was all set to do radiation but now with the vertigo getting worse I might change my mind and go with surgery.  Anyway, I just wanted to let you know that there are great doctors out there who do not try to force their specialty on you.  I'm glad I found one of those! :)

Have a great weekend everyone,
Susan

1.9 cm AN
Diagnosed Jul 9 2007
Surgery will be 9/14/10 with Dr. Haynes and Dr. Thompson at Vanderbilt

agnes

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Re: I think I've changed my mind again!..........
« Reply #1 on: August 03, 2007, 05:08:37 pm »
Hi there.  I know what you mean about keep changing your mind.  I have not seen the specialist as of yet, not until Aug 13th,
but I have been researching all of the options, and it is hard to make a choice.  Each one has different good things as well as different post effects.  I am sure that I will be making this decision myself in about another week or so.  You can read the posts
here, but every case is different due to size, and location, etc.  Well in the end, you will make the right decision for you I'm sure.
It is not an easy thing to do, since none of this is just a fly by night routine treatment.  I wish you the best on your decision.
6x8x12 mm diagnosed 7/11/07 left side AN watch and wait. Partial hearing loss
left ear. Second MRI done 03/21/2008 waiting results. Unchanged from last year. 1.3 cm.Third MRI done 02/16/2009 1.3 cm unchanged. 4th MRI 12/18/09  Still 1.3 no growth, just some vascular chgs noted.MRI 11-30-12 no growth

aardvark

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Re: I think I've changed my mind again!..........
« Reply #2 on: August 03, 2007, 06:00:08 pm »
Hi -

Not sure if this is the test your doctor is recommending, but I was sent for a type of balance test called a videonystagmography after I casually mentioned to my ENT that I hoped the earwax he was removing might improve my balance.  I had started weaving, but had no noticeable hearing loss, and thought the "fullness" in my ears was due to wax.  (and we all know how that story turns out)

The test was done on an empty stomach and NO caffeine.  I was seated inside a vertical cylindrical chamber on a chair that would rotate back and forth, which a technician controlled from outside the chamber.  The concave wall in front of me had moving stripes of light projected onto it, upon which I was asked to focus while a camera logged my eye movements.

In the second part of the test, I lay on a table with my eyes covered by a scuba-like blackout mask.  It recorded my eye responses while the technician bathed my ears first with very warm water, then cold, as she moved my head into different positions.

It wasn't a difficult or uncomfortable test.  Except for the "no coffee" part.
1.5cm X 1.0cm Left Side AN  Dx 8/05
CK at Stanford 9/05   Drs. Chang & Gibbs

Betsy

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Re: I think I've changed my mind again!..........
« Reply #3 on: August 03, 2007, 06:30:42 pm »
Hi Susan,

I lost track of the number of times I changed my mind at first.  When I read back through my AN notes/journal, I can see how my "waffling" evened out over time and became an actual decision.  When I found the right combination of treatment and doctor, everything seemed to click and it just felt right.  Of course, time will tell whether or not it was a good decision, but I've rarely been wrong when I trusted my intuition.

I think you've accomplished a lot, especially considering it's been only a month since you were diagnosed!

Betsy
15mm left side AN, diagnosed 4/25/07, radiosurgery via Trilogy 8/22/07.  Necrosis & shrinkage to 12.8mm April 2009

sgerrard

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Re: I think I've changed my mind again!..........
« Reply #4 on: August 03, 2007, 10:02:24 pm »
The great thing about your post is that you are focusing on what is good about option A, versus what is good about option B. Much better than dwelling on the negatives, and it will make it easier to decide if you are looking at them in a positve way.

I think it is very helpful to try on both hats. Walk around for a week thinking to yourself "I will be having surgery next month." Then the next week walk around thinking "I will be having radiation next month." See which hat fits better.

I had balance testing, including ENG, VEMP, and ABR, a nerve response test. They can provide useful information about the status of the balance and hearing nerves, that may help in choosing an appropriate treatment.

They are easy to go through. In one test,they put hot and cold water in your ear, and video your eye movements with special goggles. They made me name things by the alphabet (Akron, Boston, Chicago, Detroit...) to keep my mind from overriding the eye responses - or maybe just to humiliate me when I got stuck on a letter.  :D

Keep up the great attitude, it is helpful to others (like me, for instance).

Steve
8 mm left AN June 2007,  CK at Stanford Sept 2007.
Hearing lasted a while, but left side is deaf now.
Right side is weak too. Life is quiet.

McFlorida

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Re: I think I've changed my mind again!..........
« Reply #5 on: August 04, 2007, 06:37:20 pm »
I agree with Steve, that looking at the positives of treatment options seems better than dwelling on the negatives.  When I start reviewing all of the negatives of each treatment, I feel like it only is piling on to all the symptoms that I already have.  It's depressing.  I also like the "trying on different hats" comparison.  I saw another specialist yesterday, and I think that he had a similar attitude.  He seemed very balanced as we discussed options, and it seemed that he was sizing me up for which approach would be my match.  I have another appointment this Thursday with my first ENT, but it seems like a real choice is finally beginning to form for me.
6 x 12mm AN, Right-side, pre-treatment
Diagnosed 6/28/07. Retrosig 8/30/07.
Regrowth 1.2 x 1.6 x 1.5cm AN, Right-side.
Diagnosed 12/27/10. Treatment TBD.

 


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