Author Topic: second opinions??  (Read 4601 times)

Carson

  • New Member
  • *
  • Posts: 22
second opinions??
« on: October 15, 2008, 03:58:55 pm »
Hello everyone, 


How many of you had second opinions??
 Do these second opinions pertain to the surgeon or the first diagnosis??

My father was recently diagnosed with AN and this all seems to be moving very fast.......First appt with surgeon at The Ohio State University on Oct 24th and surgery scheduled Nov 4th.....He is having lots of symptoms (facial and hearing).....size of tumor is moderate....I have never considered a second opinion...my family pretty much goes with the flow of things.  I know my mother questioned the ENT dr about the Cleveland clinic, he said he could refer my father there but he has worked closely with these surgeons  at OSU and has all the faith in the world in them.  Should I even bring a second opinion up to my parents??  I know they just want to get it taken care of before it becomes worse.....


Thank you,
Carson



Loving daughter to my
Father recovering from AN surgery
9/4/08 at The Ohio State University Medical Center
Dr. Welling and Dr. McGregor
GO BUCKS!!!

leapyrtwins

  • Hero Member
  • *****
  • Posts: 10826
  • I am a success story!
Re: second opinions??
« Reply #1 on: October 15, 2008, 05:25:40 pm »
Hi, Carson -

I just answered your other post, but I'll give you my two cents worth on this thread also  ;)

Second opinions usually refer to treatment options since a MRI with contrast is generally all that is needed to confirm the existence of an acoustic neuroma.

The ANA highly encourages patients to seek treatment by doctors who have specific experience in treating ANs and by experience, they mean lots of it.  The general concensus around the forum is 100% agreement with that recommendation - although there's been some debate about how many procedures constitutes "experience".  So, first and foremost, you need to make sure you dad has a doctor(s) who has lots of experience in treating ANs.

Many AN patients get second opinions - lots get many more than that - but it seems to be a personal preference kind of thing.  I totally agree that you need to find someone who has experience, but how many "somebodies" you find depends on you and your comfort level - or in this case, your father and his comfort level.

One thing to keep in mind is that some doctors may only treat ANs surgically and others may only treat them with radiation.  These doctors tend to recommend the treatment that they personally perform.  There are doctors who perform both types of treatment and IMO if your father didn't see one of them, he should.  If he can't in IMO, he should see at least one doctor who regularly does AN surgery and at least one doctor who regularly does radiation.

I believe I read in your other post that your dad's AN is 2.5 cm which most likely gives him the option of radiation or surgery.  While I chose surgery, it's not everyone's choice.  You dad may decide that he'd rather have radiation; lots of AN patients make this decision.  I guess what I'm trying to say here is that treatment choice is a personal choice and your dad should know all his options before making his decision.

I only met with one doctor (a neurotologist) prior to my decision to have surgery; he came highly recommended by my ENT.  My neurotologist treats ANs with surgery and radiation, so I didn't need to consult with another doctor to see what my options were.   My neurotologist had the skills, the experience that I felt he needed, and personally I liked the man - bottomline, I had a good gut feeling that he was the guy to treat my AN.  I was confident in him and I was comfortable with him.  I did originally have a little hesitation because I didn't think he had much of a sense of humor (a vital requirement of mine), but I decided it was irrelevant since I'd be asleep during my surgery  ;)  Basically, I decided I personally didn't need a second opinion, so I stopped at the first. 

If I didn't like my neurotologist, didn't trust him, or if I felt he didn't have the experience necessary to treat my AN, I would have looked elsewhere.  And in the end, he proved to have a much better sense of humor than I originally thought.  Either that or he developed one specifically to help me get through my BAHA surgery with lots of laughter - which just reinforced that I made a great choice of docs  ;D

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

ppearl214

  • Administrator
  • Hero Member
  • *****
  • Posts: 7451
  • ANA Forum Policewoman - PBW Cursed Cruise Director
Re: second opinions??
« Reply #2 on: October 15, 2008, 08:43:17 pm »
Hi Carson and welcome (to your dad as well).  I'm sorry to hear that your dad is going through this but... I am SOOOO thrilled he has you in his life and in his corner to help him during the process......

Now, don't tell Jan I said this but... she gives great advice.... but I'll deny it if you tell her I said it. ;)

I have spoken to many AN patients (and others) that have jumped at the first recommendation by a doc that they met, without doing a 2nd opinion (my mother is on that list as well for recent knee replacement surgery......).  IMO, it makes me nervous but it is not for me to judge. I know, for me, it doesn't work that way.

I live for second opinions. I have multiple ailments that need specialists... not that I enjoy living in dr's offices, but for me, my attitude is.... research, research, research. Check out all options, leave no stone unturned.  It is our bodies and we must do what is best for us and our particular situations.... as for the docs... they only see us for a short amt of time and we are the ones that have to live with these issues 24/7.

It's been discussed here many times that docs can be quite biased in treatment options of AN's.  Surgeons usually push surgery,..... radiation docs usually push some form of radiation treatment....

I firmly believe it is up to us, as patients (and caregivers and family members) to be the best, well-informed patients we can be. So, if it means getting 2nd and 3rd opinions, then go for it.

I see your dad is already scheduled, so on the 24th, hear what the surgeon says, then from there, depending on experience (as Jan noted) and comfort level, then you will know whether to seek out that 2nd opinion or not.... just my thoughts.

You asked... I answered... sorry :)

Again, welcome... please let dad know I am sending wishes to him... and hugs to you ... hang in there... we're here for you all.

Phyl
« Last Edit: October 15, 2008, 08:46:36 pm by ppearl214 »
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

gordy

  • Jr. Member
  • **
  • Posts: 80
Re: second opinions??
« Reply #3 on: October 15, 2008, 08:45:22 pm »
i had 2 opinions. as jan just said some only do surgery. the first i saw said surgery was the only option. i went for a second opinion and this doctor did both. told me im a candiate for either surgery or radiation. had i not seen him i wouldnt ha ve known that radiation was an option for me. so i am glad that i got a second opinion. good luck to your dad and you and your family.

sgerrard

  • Hero Member
  • *****
  • Posts: 3475
Re: second opinions??
« Reply #4 on: October 15, 2008, 10:47:42 pm »
Who is the doctor at OSU? Dr. Welling, by any chance? I have heard good things about him. Also the doctors at U. Hospital in Cleveland are supposed to be good.

I think most people mean picking your surgeon when they say get a second opinion, or they mean considering radiation versus surgery. For picking a surgeon, you just need to find that combination of experience and gut feeling or chemistry that tells you "this is the doctor for me" - or for your dad, in your case. The concern is just that some people don't even realize that finding a doctor that feels right is an option and a right and something you should really try to do.

The scheduled surgery is still 3 weeks away, so you can take a little time to investigate. Searching this forum is one way, and often you can find the doctor's name mentioned by others, as well as the name of other possible doctors. If you go to the appointment and it feels right, then you can go ahead with the surgery - and if it doesn't feel right, then cancel it and look around some more.

Best wishes in any event,

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.

Carson

  • New Member
  • *
  • Posts: 22
Re: second opinions??
« Reply #5 on: October 16, 2008, 06:20:24 am »
Who is the doctor at OSU? Dr. Welling, by any chance? I have heard good things about him. Also the doctors at U. Hospital in Cleveland are supposed to be good.

I think most people mean picking your surgeon when they say get a second opinion, or they mean considering radiation versus surgery. For picking a surgeon, you just need to find that combination of experience and gut feeling or chemistry that tells you "this is the doctor for me" - or for your dad, in your case. The concern is just that some people don't even realize that finding a doctor that feels right is an option and a right and something you should really try to do.

The scheduled surgery is still 3 weeks away, so you can take a little time to investigate. Searching this forum is one way, and often you can find the doctor's name mentioned by others, as well as the name of other possible doctors. If you go to the appointment and it feels right, then you can go ahead with the surgery - and if it doesn't feel right, then cancel it and look around some more.

Best wishes in any event,

Steve


Yes, Steve it is Dr.  Welling! 
Loving daughter to my
Father recovering from AN surgery
9/4/08 at The Ohio State University Medical Center
Dr. Welling and Dr. McGregor
GO BUCKS!!!

Carson

  • New Member
  • *
  • Posts: 22
Re: second opinions??
« Reply #6 on: October 16, 2008, 06:26:12 am »
Thank you,

I will definately wait and see how the appt. goes....and then help them make the decision for a second opinion or not.  I will keep you posted on how the appt goes and what my father thought!

Loving daughter to my
Father recovering from AN surgery
9/4/08 at The Ohio State University Medical Center
Dr. Welling and Dr. McGregor
GO BUCKS!!!

Debbi

  • Hero Member
  • *****
  • Posts: 1921
  • Originator of the Magic Scarf
    • Debbi's AN Blog
Re: second opinions??
« Reply #7 on: October 16, 2008, 08:59:47 am »
Carson-

You've already gotten great advice from my friends here.  I would just say that the initial diagnosis was, for me, the most terrifying time of this entire journey.  I had a strong urge to just find someone to get this thing out of my head ASAP.  I am very glad that I got three opinions, even though it took a little longer than I wanted (in truth, I wanted to get it out immediately - the same day would have been good! :D)  It was nearly 2 months from diagnosis to surgery for me and worth the wait.  I ended up having surgery because it was really my only good option given the position of the tumor, but I ended up with a surgical team who I trusted implicitly and I was able to walk into surgery feeling calm and confident. 

I guess what I am trying to say here is to make sure that you and your dad are completely comfortable with the treatment decision and the choice of doctors - even if it takes a little longer than you'd like.  This is almost always a very slow growing tumor, so you have some time.

Keep us posted.

Debbi, sending good thoughts your way from NJ
Debbi - diagnosed March 4, 2008 
2.4 cm Right Side AN
Translab April 30, 2008 at NYU with Drs. Golfinos and Roland
SSD Right ear, Mild synkinesis and facial nerve damage
BAHA "installed" Feb 2011 by Dr. Cosetti @ NYU

http://debsanadventure.blogspot.com

sgerrard

  • Hero Member
  • *****
  • Posts: 3475
Re: second opinions??
« Reply #8 on: October 16, 2008, 09:26:46 am »
Yes, Steve it is Dr.  Welling! 

Thought it might be. :)

Here are two links to past posts about him. If you go to the main page, and put Brad Welling in the search box, you can find more.

http://anausa.org/forum/index.php?topic=2854.msg30200#msg30200
http://anausa.org/forum/index.php?topic=5825.msg53649#msg53649

Welcome to the forum, by the way.  ;)

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.

Carson

  • New Member
  • *
  • Posts: 22
Re: second opinions??
« Reply #9 on: October 16, 2008, 01:08:11 pm »
Thank you so much,Debbie!!

Thanks Steve!! I am on my way to those links now!!  :)
Loving daughter to my
Father recovering from AN surgery
9/4/08 at The Ohio State University Medical Center
Dr. Welling and Dr. McGregor
GO BUCKS!!!

AMD

  • Full Member
  • ***
  • Posts: 112
  • I'm sorry, could you repeat that?
Re: second opinions??
« Reply #10 on: October 17, 2008, 09:15:17 pm »
I had 2 opinions.  Both neurotologists referred to by local ENT.  then once i picked the neurotologist, i met with his neurosurgeon partner. 

-Amy
Left side 1.7 cm AN diagnosed 7/30/08
Misdiagnosed for 8 + years
Surgery, Sub-occipital, 11/17/2008 at Indiana University Hospital
Left SSD
Tumor much larger than expected. Facial nerves intact, but had RARE swelling resulting in brachial plexus injury and tracheostomy after surgery.