Author Topic: first opinion from surgeon yesterday  (Read 4058 times)

nanramone

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first opinion from surgeon yesterday
« on: April 02, 2010, 02:15:20 pm »
Hi all -

I had the first opinion from a surgeon yesterday - April Fool's Day! But I don't think he was "fooling".  He recommended radiation, and soon, I'll make an appointment to see a couple of doctors at St. Vincent's hospital in Indianapolis to have an opinion about this. I am going to spend lots of time researching radiation because I feel fearful about it for some reason...but after a surgeon saw me and is referring me to someone else, I feel a bit better already. He has confidence in radiation treatment. It was nice to hear a surgeon refer me to someone else - losing "business" for himself in order to do the best for me.

 He said he does not think surgery is a good idea for me because I am very active and healthy and the risks of permanent damage from surgery are too great, in his opinion. I think he is genuinely concerned about the quality of my life, post-treatment.

This forum is great - I read a lot here, and am becoming less worried about this condition. I'll post more info as I know more about what I'm doing...

thanks to all of you~

Nancy

Jim Scott

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Re: first opinion from surgeon yesterday
« Reply #1 on: April 02, 2010, 03:26:16 pm »
Hi, Nancy ~

Thanks for posting that doctor's opinion.  You're right, it's impressive when a surgeon declines a patient because he is concerned about their quality of life after surgery.

I trust your future consults will help you toward a decision and of course, we'll be here to support you in whatever you decide.

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: first opinion from surgeon yesterday
« Reply #2 on: April 02, 2010, 08:23:37 pm »
Nancy -

glad to hear you had your consultation.  While treatment options are a personal choice, I have to say that having had AN surgery I can't really agree with your doctor that the risks of permanent damage from surgery being too great.

I have no permanent damage from my surgery except for being SSD (single-sided deaf).  Did that change my life?  Absolutely.  Did it change the quality of my life?  Not really.  It made my life different, but that's about it.  I am active and I am healthy.  Yes, I'm half deaf, but so are many others - some who've never had AN surgery.

I'm not at all knocking radiation, it is a choice that many have made and they are happy with their choice.  I commend a surgeon for telling you to look into radiation, I just don't want you to think that all AN surgeries have bad outcomes with lots of permanent damage - because that simply is not true.

Like Jim said, you have our support in whatever decision you make.

Good luck in making yours - it's one of the hardest parts of the AN Journey.

Jan
« Last Edit: April 02, 2010, 08:30:07 pm by leapyrtwins »
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

JerseyGirl2

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Re: first opinion from surgeon yesterday
« Reply #3 on: April 02, 2010, 08:51:11 pm »
He said he does not think surgery is a good idea for me because I am very active and healthy and the risks of permanent damage from surgery are too great, in his opinion. I think he is genuinely concerned about the quality of my life, post-treatment.

Nancy,

I was a little taken aback when I read your post and was glad to see that Jan had replied to it so appropriately. I agree with what she has said, and want to emphasize that the quality of my life after having had AN surgery is also just fine. I was healthy and active before my surgery, and have been healthy and active since my surgery! I think that the vast majority of surgical patients recover without serious complications, and we need to remember that there are many, many acoustic neuroma patients out there who don't belong to this forum and who are also doing quite well.

Best wishes,

Catherine (JerseyGirl 2)
Translab surgery and BAHA implant: House Ear Institute, Los Angeles, 1/2008
Drs. J. House, Schwartz, Wilkinson, and Stefan
BAHA Intenso, 6/2008
no facial, balance, or vision problems either before or after surgery ... just hearing loss
Monmouth County, NJ

nanramone

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Re: first opinion from surgeon yesterday
« Reply #4 on: April 05, 2010, 07:31:04 am »
Hi all -

I'm wondering if the surgeon's opinion is just based on what he thinks the outcome will be if HE does the surgery. Interesting...I think he was not trying to tell me that I would definitely have a worse outcome with surgery, but that the risks are greater. This is what I'm still investigating. I'm going to send my info to Pittsburgh to see what they think.

I have not been able to find much information about negative outcomes from radiation. I do want to weigh the pros and cons. It seems like most people who have radiation are happy with it. There's so much to learn.

thanks everyone, I'll keep you all posted...

Nancy

cindyj

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Re: first opinion from surgeon yesterday
« Reply #5 on: April 05, 2010, 08:46:13 am »
Hi, Nancy, and welcome to the forum!  Just want to second what Jan and Catherine said about surgery...there are many, many here on the forum who had very good outcomes with surgery...I'm not so young (50), but was very active pre-surgery and am still very active post-surgery.  You're right, perhaps he just isn't comfortable performing the surgery himself.  Lots of experience with AN's is the number one thing recommended by the ANA!  With your tumor size, radiation is definitely an option and may be the right choice for you, but it is your choice ultimately.  Just be sure you make your choice based on plenty of research and questioning.  We're here to help in any way we can :)

Best to you,

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

Sue

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Re: first opinion from surgeon yesterday
« Reply #6 on: April 05, 2010, 01:20:35 pm »
Kudos to your doctor for telling you of other options and for recommending an alternate route.  A lot of doctors don't do that.  My own personal journey took me to doctors who do both surgical and radiosurgical techniques, and the doctor that I ended up with suggested radiation.  My age and medical history probably was a factor, but it's also so much about that doctor, what they are interested in, how they were taught and trained, their age bracket and what they are comfortable with.  My doctor said that in his opinion there were too many people who came away with permanent facial paralysis after surgery.  His own training and interests had him more comfortable with a radiation approach when possible and surgical if that was the only choice.  So, I had the radiation.  It's just very important to get a good experienced doctor with a good team and a good hospital to give you the best outcome no matter which way you jump.  Both methods can be highly successful, and sadly, there are people who have had problems with  both methods too.  I wish you all the best in your research and eventual treatment and recovery.

Sue in Vancouver, USA

PS   Read my blog, if you want!!
Sue in Vancouver, USA
 2 cm Left side
Diagnosed 3/13/06 GK 4-18-06
Gamma Knife Center of Oregon
My Blog, where you can read my story.


http://suecollins-blog.blogspot.com/2010/02/hello.html


The only good tumor be a dead tumor. Which it's becoming. Necrosis!
Poet Lorry-ate of Goode

nanramone

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Re: first opinion from surgeon yesterday
« Reply #7 on: April 05, 2010, 04:33:10 pm »
Sue- I enjoyed your blog. I continue to read...

thanks so much for upbeat words. I talked to a nurse who works with the doctor I was referred to - said he's done "over 100 acoustic neuromas in 7 years", and she could not tell me his success rate with Novalis - just told me "his patients LOVE him!". Not good enough...I'll continue to look....


Nancy


Sue

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Re: first opinion from surgeon yesterday
« Reply #8 on: April 06, 2010, 01:23:33 pm »
Glad you enjoyed it!  Nice to write this stuff down, because you tend to forget what happened, when it happened, etc. 

Best of luck!

Sue in Vancouver, USA
Sue in Vancouver, USA
 2 cm Left side
Diagnosed 3/13/06 GK 4-18-06
Gamma Knife Center of Oregon
My Blog, where you can read my story.


http://suecollins-blog.blogspot.com/2010/02/hello.html


The only good tumor be a dead tumor. Which it's becoming. Necrosis!
Poet Lorry-ate of Goode