Author Topic: My hard choice  (Read 4815 times)

Masoudy49

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My hard choice
« on: August 24, 2015, 05:13:32 am »
Hi every one:

I am so overwhelmed with the information I read and how to apply it to my own case. Your input will help me.
I have been diagnosed with a 2.6 size AN and after consulting 4 prominent surgeons in the LA area, they all recommend surgery. I am 65 years old and have had a bypass heart surgery as well as artificial valve. Not concerned at all about hearing loss in me bad ear ( left ) because I have already lost it. Reading about surgery scares me away despite surgeon's advice. I cant decide whether to do surgery or radiation. Please help. Thanks


 

leapyrtwins

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Re: My hard choice
« Reply #1 on: August 24, 2015, 02:35:37 pm »
It's a very tough choice; probably the toughest one you'll make on your AN Journey. As some of us old timers on the Forum say "one size does not fit all".  The choice that was best for me isn't necessarily best for you.  In my opinion, both surgery and radiation are equally good choices.

I chose surgery, and in hindsight (it was 5/31/07) it doesn't seem like a big deal anymore.  Then again, I was lucky - the entire tumor was removed, I don't have permanent side effects except for SSD (single-sided deafness), my life has gone on normally (except that I now wear a BAHA) which to me is no big deal. 

The most important thing I can tell you is that you need to make your own decision.  My doc does both radiation and surgery, and at the time of my diagnosis, gave me the choice.  I asked him to choose for me, but he flat out refused.  It kind of ticked me off at first, but over time I came to realize that he was absolutely right.  No one can make your decision but you.

Do your research, consider the pros and cons of each treatment, and then follow your head, your heart, and your gut.

Good luck,

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

alabamajane

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Re: My hard choice
« Reply #2 on: August 24, 2015, 05:15:52 pm »
Hi and welcome,,
Jan is right that no one can tell you what to do,, it is a very difficult decision which we all had to make.
I am sure once you have done enough researching you will become comfortable with your choice.

It is not a surprise that the surgeons all recommended surgery,,,that's what they do for a living ...unless they gave you specific reasons for that choice..I.e. Location of tumor, to close to brainstem for swelling associated with radiation,,??

You owe it to yourself to contact a Dr who specializes in radiation of these rumors and get his opinion.
Search for Dr Chang at Stanford I believe.
 
Just my opinion,, I would lean towards radiation I believe as the surgery can be a difficult recovery. I had surgery in 2011 as I was not a candidate for radiation after I watched and waited for 3 yrs it grew too large..SSD , single side deaf,, is not that difficult to deal with as you say. I was that way until I decided to get a BAHA device last Dec. I am not that satisfied with it and almost prefer SSD to dealing with it.
Good luck to you in your decision making process,, you will eventually get comfortable with a treatment I'm sure...

Jane
translab Oct 27, 2011
facial nerve graft Oct 31,2011, eyelid weight removed Oct 2013, eye closes well

BAHA surgery Oct. 2014, activated Dec. 26

leapyrtwins

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Re: My hard choice
« Reply #3 on: August 25, 2015, 01:46:30 pm »
You owe it to yourself to contact a Dr who specializes in radiation of these rumors and get his opinion.
Search for Dr Chang at Stanford I believe.

alabamajane is absolutely right, Masoudy49.  Docs who do surgery usually always recommend surgery, so it's important to consult with a doctor who treats ANs with radiation.   Most docs will radiate an AN up to 3 cms.

Dr. Stephen Chang @ Stanford does radiation and he's got a stellar reputation.  He'd be a good choice of another doc to consult with. 

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

Masoudy49

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Re: My hard choice
« Reply #4 on: August 26, 2015, 06:14:44 am »
Thanks to all of you. I finally scheduled a surgery for Tuesday Sep. 1st with the House ear clinic in LA. Dr. Schwartz is the Surgeon. He has done 1700 AN surgeries and that makes me feel a little better but with all side effects of surgery, Still all 4 of the recommended it and they do both. If any one knows about house clinic or has worked with them, I would appreciate your input.

leapyrtwins

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Re: My hard choice
« Reply #5 on: August 27, 2015, 12:42:23 pm »
Congrats on making your decision.

Hope your surgery goes well.

There are numerous posts about House on the Forum; just search.

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