advice and tips for meeting with docs in Boston

[krbonner]

After a year of monitoring, it appears that I need to take some action about my left side AN since it's growing faster than "desired."  I'm in Boston and seeing the team at MEEI/MGH.  I've seen Dr. McKenna several times, and now have appts at the end of the month with Dr. Barker (neurosurgery) and Dr. Loeffler (radiation oncology).  I know there's lots of people here who have dealt with these doctors.  So if anyone has tips/advice/tidbits on what to expect from them and how to approach them it would be greatly appreciated.  I have lists of questions already (though always interested in hints on what to ask, too), so I'm really interested in what these doctors are like and what I can expect from them individually.

I'm going on the assumption, based on my research so far and Dr. McKenna's recommendations, that I'll have translab surgery (my hearing is already gone and the AN is largish).  But I'm thorough and want to explore all options before making a final decision.

Thanks for any help!!
Katie

[Desilu]

Hi Katie,

Ask all the questions that you can think of and then ask more. See how the doctors answer your questions and write notes, it's hard to remember everything they say if you don't write some of it down. Go with your gut feeling. If you don't feel good about these doctors after all the questions then don't do it, look for someone else. There are plenty of great doctors out there, you just have the find the one that you feel comfortable with. You are putting your life in his hands, you need to feel good about your decision.

One question might be: If this were your family member in my situation what would you suggest? See what they say.

I hope things go well for you. One last thing, you may want to pray about it, you will know when it is right.  Ann

[Larry]

Katie,

there are lots of questions to ask and they are sprinkled across this board. Hopefully we will get a mod done with this category as a menu item but in the meantime,

explore options or cyberknife and gammaknife radiation treatments as well as surgery. As a rule, surgeons don't reccomend radiation treatment so speak to appropriate specialists.

Find out the likely after treatment issues such as meds, risks of facial paralysis, dry eye (this is often overlooked but a major concern for those with it)

Find out more about the location of your growth and the ramifications of not getting it all out. Even translab doesn't guarantee a full removal of the an.

Ask about re-growth issues - especially if they can't get all the growthy out coz of its location on one of the nerves.

Laz

[ppearl214]

Hi Katie,

another Boston Brat here! (I'm in Wakefield!).

I had dinner with CrazyKat (Paul) last night... told him about your post. He had his surgery at MGH last year with Barker. He can certainly chime in about his experiences with microsurgery at MGH and McKenna and Barker. Waiting for his sorry butt to get out of bed (Yo, ROCKERDUDE!) so he can share with you about his experience. I have to say, MGH did an absolutely fantastic job on Paul. To look at him and see him in action, you would never know he had his surgery last year... and he had a BIG AN as well. 

Hang tough and would love to say hi sometime.  Nothing like being able to meet another local AN'er.

Phyllis

[krbonner]

Update:

I've now met with Dr. McKenna (MEEI), Dr. Barker (Neurosurgery/MGH), and Dr. Loeffler (radiation oncology/MGH).  All three have recommended translab surgery, which is the same conclusion I reached on my own.  So, we're moving ahead for Sept.

But I just wanted others to know that I've been incredibly impressed with all three of these doctors.  They're all easy to talk to, they actually listen to my questions and concerns and answer them, and I've never felt even a little bit rushed or brushed off by any of them.  (I've had some bad doc experiences!)  And the Barker/McKenna team averages 2 of these surgeries a week with very good results so I feel very confident being treated by them.  I feel like I've made the best decisions I can to put myself in the best possible position for recovery.

Now I need to relax and enjoy the summer...  ;-)

Katie

[ppearl214]

Katie,

thrilled you found a comfort level with the MGH team! you are in terrific hands there! Please keep us posted on procedure dates, etc.  We'll all get you through the summer... that's no worries!  

Hang in there... it'll be here, done and done before you know it!
xo
Phyl