Second Opinions and lots of questions

[Kimber]

Hi,
I've been reading posts for 3 days and finally got brave enough to post.
 I was diagnosed in December with a medium size AN at MEE. I was then referred to Dr. Barker at MGH and meet with him a week ago. He basically told me my options as did MEE and it was my decision as to what treatment to have. He also told me to visit this website which is terrific. Now I don't know which way to turn. After reading posts I'm convinced that with Dr. Barker and his team I'm in good hands. I'm not sure on the type of radiation MGH uses, I've read some of the posts about the machine being down.. Do other institutes in Boston use the Cyber surgery? Does any one have advise on how to get second opinions? And if you see a doctor at MEE, . I don't see any posts about the doctor I saw at MEE, how do you go about seeing a different Dr. or getting a second opinion at the same place.
Sorry for the rambling but I really need some advise.

Thank you
Kim H.

[TJ]

Kim,

Just for information most all insurance companies will allow second opinions.  It is totally up to you as to get one or not.  You certainly want to make a decision that you are comfortable with.

Best of Luck

TJ

[CHD63]

Hi Kim and welcome to this forum .....

We strongly encourage patients to get more than one opinion ..... especially if you are unsure of the treatment option(s) being presented to you.  There are many centers around the country who will evaluate your MRI free of charge and give an opinion.  House Ear Institute in LA will, as well as Stanford in California.

Any doctor who is worth his/her "salt" is not intimidated by a request for a second opinion.  You should be able to contact the office staff at MEE and tell them you would just like to have another opinion and they should be able to set up the appointment.

When I was diagnosed, my ENTs office set up three different appointments for me.  I actually only went to the first one and had the overwhelming feeling that this was the right place and the right decision so I cancelled the other two.  If you are at all unsure, by all means get another opinion.

Clarice

[Jim Scott]

Hi, Kim - and welcome.  Thanks for posting. 

The decision as to how you'll addtess your AN is always difficult - for everyone.  Surgery or radiation?  What doctor is best?  What facility?  We've all been there  - and that is why seeking more than one medical opinion is a sound idea.  Most doctors will refer you to another doctor that specializes in neurosurgery and/or radiation oncology, or your PCP can do so.  Insurance companies usually won't balk at more than one medical consultation.  AN surgery/radiation is serious business and requires all the information you can get to arrive at a choice you're comfortable with and confident about. Please keep in mind that both surgery and radiation have inherent risks as well as singular advantages and one AN patient's experience, be it good or not-so-good, is not a template for every other AN patient's experience.  However, I underwent both surgery and radiation ( in a planned, two-step process) and had an excellent outcome, as I hope you do, too.

Jim

[krbonner]

Hi, Kim!

There are several very good doctors in the Boston area with lots of AN experience. I see Dr. McKenna at MEEI, and had surgery in 2006 with him and Dr. Barker. Excellent surgeons.

There are many options for radiosurgery in the Boston area, including MGH (gamma knife and Proton) and Beth Israel (cyber knife). I can't remember the physician names off the top of my head, but they've been discussed many times on the forums if you seach. I'm sure other Boston area people will chime in here as well.

You didn't say how large your AN is, but I assume it's small enough that you have time to investigate all your options and make the choice that's right for you.  There's isn't a "right" choice here - everyone one of us is in a unique situation, with a unique AN, which means the choice that I made may or may not be the right one for you.  Take your time, see as many doctors as you need to, and keep asking questions here.  I don't know where you are in the area, but there is a brunch in Worcester on April 17 (see http://www.anausa.org/smf/index.php?topic=14599.0) that you should really consider going to. You'll meet may AN patients, some pre-treatment and some post. I went to my first brunch a few months before my surgery and it was a wonderful experience. I'll be out of town this time, but the people who go are all amazing, wonderful, warm, and very welcoming.

For what it's worth, my AN was 2.3 cm at the time of surgery. After watching-and-waiting for a year, my AN was growing much faster than "normal". (.5cm in that year). After meeting with surgeons and oncologists, I chose surgery. 

Good luck!
Katie

[OTO]

If have questions about Cyber... do a google search (or use the search tool on this forum).   There is a Cyberknife forum that is moderated by Univ of Pittsburgh.    A couple of doctors will sometimes answer your questions....

[ppearl214]

There is a Cyberknife forum that is moderated by Univ of Pittsburgh.

OTO,
I'm not sure what forum you are referencing (my understanding is UPitt has GK, not CK, unless they recently obtained).  The CK forum can be found at:  www.cyberknife.com/forum.  The doctors there, that volunteer (ie: no pay/stipends, etc) their time to answer patient questions are from a variety of places.  For AN's, most questions are answered by Dr. Clinton Medbery out of OKC and Dr. Jerome Spunberg out of FL.  Both are exceptionally versed in all forms of radio, having used CK and GK over the years.  As a "go-to" for radio questions that patients usually have, usually defer questions to them for proper medical insight.

Hi Kim and welcome.  I had CK at Beth Israel in Boston almost 5 yrs ago.  Radio-oncs names at Beth Israel are Dr Mahadaven (my radio doc), Dr Floyd.  Neuro-onc (1 of them) Dr Eric Wong.  I, personally, am happy with my outcome and can also reference others that have been treated by them for AN's.

Providence is leading the charge, as well as Tufts Medical, for GK.  Dr Georj Noren is in Providence. I'm sorry I don't know the dr's name at Tufts but "Helga" (a user on this site) was treated at Tufts for her AN.  A "search" option will disclose.

Dr. Elizabeth Claus at Brigham/Woman's is leading the AN charge there for surgical. As a side note, Dr Claus has been pursued over the years by the ANA to become a member of their Medical Advisory Board (MAB) and last year, accepted their invite.  You will see her noted on the ANA home page/Medical Advisory Board. She is my back up surgeon (gawd forbid anything went wrong) and is following me on another medical issue.  A true gem! 

Dr Jay Loeffler at MGH has been leading the AN charge for radio, esp. Proton radio.  Number of users here (elliemae, tsl and stoneaxe) are some that come to mind first.  stoneaxe, unfortunately, did not have a successful Proton treatment and had his surgically removed by Barker/McKenna (if memory serves me right).... am following elliemae and tsl on their proton journey right now. All easily reachable here on the site.

So, that is some of my AN Boston knowledge to add what has already been shared. I hope it helps, and again, welcome. We're here to help.

Phyl