Author Topic: New diagnosis - seeking info  (Read 7870 times)

msuscottie

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Re: New diagnosis - seeking info
« Reply #15 on: September 14, 2010, 01:22:18 pm »
Hi Tracey,

One thing to realize is that those who had GK will usually recommend GK and those that had microsurgery will often recommend that. Talk to a lot of Doctors, nurses, patients, forum members, friends, family and feel comfortable with whichever route you go. Don't get pressured one way or the other.

So sorry you're here, but welcome!   :)

leapyrtwins

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Re: New diagnosis - seeking info
« Reply #16 on: September 14, 2010, 04:51:58 pm »
I agree that you shouldn't let anyone pressure you into a decision.  Doing what is best for you is paramount here.

But I'm not sure I agree that if you've had radiation, you tend to recommend radiation and if you've had surgery, you tend to recommend surgery.

I had the choice and picked surgery, but if circumstances were a little different - smaller tumor, less hearing loss, etc., - I'm pretty darn sure I would have picked radiation.  Maybe that's just me, though.

Listen to your "gut" and to your heart.

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

Jim Scott

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Re: New diagnosis - seeking info
« Reply #17 on: September 15, 2010, 01:58:11 pm »
Scott ~

I have to chime in here.  I had both surgery and radiation (in a planned sequence) so I guess I would recommend both.  Well, not really, because my AN's size, location and growth rate were specific to me and my doctor recommended the procedures he considered best for my situation.  Fortunately, he was correct and it all worked out quite well.  

Besides, although most AN surgery or radiation patients do just fine, some AN patients have less-than-satisfactory outcomes with surgery and some have equally unsatisfactory outcomes with radiation so I doubt they would be eager to recommend one or the other based on their experience.  Obviously, it's all relative to the individual.  That - and the fact we're not doctors - is why we don't make specific treatment recommendations to 'newbies', just suggestions.  As Jan stated, after receiving treatment opinions from trained, licensed medical professionals, we advise AN patients to go with their instincts, also known as their 'gut'.  As I think you know, that approach usually works out just fine.

Jim  
« Last Edit: September 16, 2010, 11:44:14 am by Jim Scott »
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.

tgillesp

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Re: New diagnosis - seeking info
« Reply #18 on: September 15, 2010, 07:27:32 pm »
Well, it has been 3 weeks today since my ENT first told me I had the AN.  He was supposed to send referrals to 2 places for me and they were supposed to call me to set up appts.  I have still not heard from either.  Does it take this long to get an appt?  I also emailed my MRI films to Dr. Chang at Stanford 2 weeks ago.  He said he would call but I haven't heard from him either.  I know my AN is small (5mm) and not urgent, but I do want to get some expert opinions so I can begin to think of the direction I'm going to go.   Is this the norm?
diagnosis 8/25/2010 5mm acoustic neuroma...second opinion by Dr. Chang says I have no tumor!!!

leapyrtwins

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Re: New diagnosis - seeking info
« Reply #19 on: September 15, 2010, 09:03:37 pm »
In my experience this isn't the norm.

I'd call the docs you were referred to and insist on an appointment - but that's just me.

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

Jim Scott

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Re: New diagnosis - seeking info
« Reply #20 on: September 16, 2010, 11:59:59 am »
Tracey ~

Getting a consult appointment with a doctor can sometimes be frustrating, especially if you're a new patient.  A lot depends on their schedule, of course and whether it's good golf weather (kidding!).  Neurosurgeons can be very busy in the OR and have only limited office hours.  A 'popular' doctor may be 'booked' but as Jan noted, some proactive phone calls can sometimes move things along.  You can't just call, ask for an appointment then wait for a return call.  It may never come.  If the person taking your call is annoyed that you're calling back and insisting on a timely appointment, that might be your cue to seek a different doctor to consult. 

I was fortunate.  Although the neurosurgeon my PCP referred me to was a dud and made me play the waiting game, the second neurosurgeon I consulted was a partner with my wife's doctor (also a neurosurgeon but he only performed spinal surgery) and gave me an appointment for the following day.  He would have seen me that day but I wasn't prepared and couldn't make it.  This well-respected, highly experienced neurosurgeon was thorough, considerate and always acted in my best interests.  I had a splendid outcome and consider myself blessed to have had this doctor perform the most serious surgery I'll probably ever have.  I hope you'll find a similar doctor and have the same kind of experience.       

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.

nanramone

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Re: New diagnosis - seeking info
« Reply #21 on: September 17, 2010, 04:07:59 pm »
I had a great experience with not only the people in Pittsburgh, but also the first surgeon I consulted, a surgeon in Indianapolis who was going to cancel his lunch hour the day before he was to leave on vacation, just in order to work me in. This was going above and beyond, in my opinion, but still...if a doctor or any professional person tells you they will call, they had better follow through - especially the most experienced, who should have highly trained staff and well run offices to provide excellent follow through, even on optimal golf days. (yes, I know that was a joke).

Though no one asked: I would not call the doctor who didn't follow through with what he said he'd do - I'd look elsewhere for treatment, regardless of his reputation...


 


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