Author Topic: How many opinions should I get?  (Read 3669 times)

sloxana

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How many opinions should I get?
« on: August 13, 2007, 04:44:52 pm »
Hi everyone
Well, I'm going to see yet another doctor tomorrow about my AN just to get one more opinion.  My question to all of you is this:  how many opinions should I get?  This is the 4th one (if you count talking to the HEI on the phone) and I have got one more appoinment at the end of August.  Is that enough, or should I keep going?  I feel like I have seen a good variety too...some pro-surgery and some pro-radiation. 
My husband is very supportive and I take him with me to every appointment to take notes.  He says he will keep going to see even more doctors if I feel I need to do so.  Please tell me what you think....I really don't know when to stop!

Susan

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

jtd71465

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Re: How many opinions should I get?
« Reply #1 on: August 13, 2007, 04:48:02 pm »
It's a comfort level.  I went on four consults much like yourself before I made a decision.  Hope all goes well.

Joe-


BTW - where are you located?

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

Mark

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Re: How many opinions should I get?
« Reply #2 on: August 13, 2007, 06:44:34 pm »
I went to 4 as well, but the right number is when you reach a point that you feel comfortable in making a decision.  :)

 Rather than focusing on quantity, I would suggest setting up quality consults in terms of expertise and diversity. Going to twenty doctors who have seen 2-3 AN's a year sounds impressive ( and expensive  ;)) but is really a waste of time in my mind. In the same light going to 5 neurosurgeons who only do surgery is pointless as well unless you're dead set on that option and aren't interested in understanding radiosurgery.

Ideally, I would go to 2 maybe 3 doctors who do both surgery and radiosurgery , who are at a world class neurosurgery medical center and have dealt with 100s of AN's. If you can't find any who do both, then do at least 2 who are experts in one and 2 in the other and that should be enough. The paradox to the above guideline is that the docs who most likely will use both options equally ( and understand them) are the "younger" ones who have been practicing 10-15 years. It is easy to get caught up in absolute numbers and I'm not sure that's always relevant in terms of outcome. Probably much more so in microsurgery where repetitive practice and skills are critical than in radiosurgery where computers assist so much in the treatment consistency. AN's really don't vary that much in any of us. They start in and around the IC expand into the open space of the cerebellpontine angle, eventually brush up against the cerebellum and eventually begin to compress it. While it may be impressive to say Hitselberger or Brackmann at House have done 1500 or 2000 AN's ( or whatever the number is), they are also 70 plus years old. From my perspective, the experience curve probably diminishes at some point , so I would feel as comfortable with any doc who has been doing 30-50 per year for 10-15 years as I would with either of the esteemed docs at HEI, for example. The difference being the 10-15 year group is more up on technology and options to guide you with your decision.

My 2  cents

Mark
CK for a 2 cm AN with Dr. Chang/ Dr. Gibbs at Stanford
November 2001

sgerrard

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Re: How many opinions should I get?
« Reply #3 on: August 14, 2007, 12:13:19 am »
Oh, you just need one opinion - the right one. ::)

Unless you are going to do a poll and see which treatment gets the most votes, the question is more about what would help you make a decision. Is there someone whose opinion would cinch it for you? Are you looking for someone to tell you that everything will work out perfectly? Or someone who recommends what you have already decided you want? Are you trying to decide which treatment to get, or who to get it from, or both?

In the end, I think most talk to doctors and read articles on the web and browse this forum, until the right choice for them begins to take shape and take hold. You can call it going with your gut, or call it the subtle process by which your mind digests all the information, weighs it all out, and then says "doing this treatment with so and so is the one that is right for me."

You'll get there.

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.

sgerrard

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Re: How many opinions should I get?
« Reply #4 on: August 16, 2007, 11:53:49 pm »
Hi Bruce,

Yes, I agree that you need to get several opinions, and even ones from different kinds of doctors - ENT, neurosurgeon, radiation oncologist. I think Sloxana is recognizing that at some point, more opinions are not going to help much more. At that point, it becomes a matter of sorting through the options, and the teams, and the opinions, and putting them together into the plan for yourself that makes the most sense.

We have discussed before how odd it is that we have to make the decision, not the doctors. But as you say, educating yourself and finding the choice that is right for you is certainly better than taking the chance of someone making the wrong choice for you.

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.

pearchica

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Re: How many opinions should I get?
« Reply #5 on: September 05, 2007, 07:29:28 pm »
Susan: I had four opinions including the HEI.. but I always was biased toward radiation treatment from day one and had to sort through the surgeons to get to the radio surgeon.  After my third opinion with Jackler, head of ENT at Stanford I thought, okay, I need to bite the bullit and do surgery.  I then checked the website after I posted on my desicion for surgery and Mark, Phyllis and Bruce encouraged me to give Stanford another shot but to speak to Chang. I'm really glad they were there for me, and Chang was able to treat me with cyber knife- no surgery.

I agree with Mark that you want to work with someone who did their fellowships in the 90's. It was explained to me by Dr. Chang that doctors in the 90's were trained in both radio and conventional surgery so they were more likely to be not biased as to "which tool to use". 

I think you will know when to stop- I was lucky in that my husband went with me to all my appointments- the challenge was each doctor was so compelling in their method or reccomendation. I think you will intuitively know who the right guy/gal is for you and the right procedure. Hell, if it takes 8 appointments to get you at a comfort level, that's what you will need to do. And after my experience, I found that you need to fight for your own health.

I knew I wanted to stay in Northern California if I could (where I live) so that helped with my desicion process.  Take care, Annie
Annie MMM MY Shwannoma (sung to the son My Sharona by the Knack-1979)
I have a TUMAH (Arnold Schwarzenegger accent) 2.4 x 2.2 x 1.9CM. CK Treatment 2/7-2/9/07, Stanford- Dr. Stephen Chang, Dr. Scott Soltys

irene

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Re: How many opinions should I get?
« Reply #6 on: September 07, 2007, 10:06:21 pm »
Do radiation treatments allow for hearing preservation and to what degree?
Irene

Jim Scott

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Re: How many opinions should I get?
« Reply #7 on: September 10, 2007, 12:10:27 pm »

Do radiation treatments allow for hearing preservation and to what degree?

Irene: 

Radiation treatment is usually very effective on small AN tumors (under 3 cm) and generally has a fair rate of success in preserving whatever hearing may be functional in the affected ear.  However, hearing retention cannot necessarily be guaranteed.  Hearing loss due to an acoustic neuroma tumor, regardless of treatment, cannot be restored.   

I would strongly advise you to peruse this website for more information and to consult a doctor for a medically qualified analysis on your specific situation.

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.

4cm in Pacific Northwest

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Re: How many opinions should I get?
« Reply #8 on: October 05, 2007, 10:30:37 am »
I chose surgeon #8 of 9.

4
4cm Left, 08/22/07 R/S 11+ hr surgery Stanford U, Dr. Robert Jackler, Dr. Griffith Harsh, Canadian fellow Assist. Dr. Sumit Agrawal. SSD, 3/6 on HB facial scale, stick-on-eyeweight worked, 95% eye function@ 6 months. In neuromuscular facial retraining. Balance regained! Recent MRI -tumor receded!

 


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