Boston doctors Mckenna and Martuza/ FSR at John Hopkins

[mac]

Drs McKenna and Barker both talked about all the radiation options, at a high level. I could have taken the discussion to a more detailed level but had done lots of research and had already decided I wanted the tumor completely out.

[ellenvig]

Hi,

I was just diagnosed yesterday with a 2.5 cm AN, pressing on the brain stem.  I am also in the Boston area, in North Billerica. 

I'm so confused as to which approach would be most appropriate! 

My hearing is not that bad, and I don't have any headaches that don't respond to a few Tylenol.  I had a bout of diziness for a few months, with some slight diziness and balance issues remaining, slight tinnitus, and facial numbness.

My PCP had some names for me - Peter Brown at B&W, Julianne Woo at Tufts, and Carter/Ojemann at MGH.  I have not contacted everyone yet.  I have an appointment with Dr. Carter next month, and have a call in to Greg Noren and Robert Martuza.

I would LOVE to get together with you folks!!!

[ppearl214]

Hi Ellen and welcome! Wow! You are down the street and around the corner from CrazyKat/Paul!  I'm in Wakefield, FYI.  FYI, we are all getting together end July if you are interested. Please see post in "General Discussion" started by me

Now, Peter Black and his protege, Elizabeth Claus are my team at B/W.  I know Barker and McKenna (or is it Martuza?) are CrazyKat Paul's drs at MGH. I can tell you that all noted are exceptionally versed in AN surgeries and the absolute best in the area!  I can give you the B/W recommendations... Paul can give you the MGH recommendations.  In my opinion, I think it's a  total coin toss on which group.  All are the best of the best and you could do consults with both to get a warm cushy. 

Here if you need my good ear... or hugs... we're terrific around here for them!
Hang in there and hope to meet you next month or next time Paul and I get together for Starbucks over at Burlington Mall (Mall Road, across from Lahey!)

Phyllis

[ellenvig]

Thanks for the info!!  I'll be consulting with several doctors, including both of your recommended teams.

I know that Starbucks well.   


Ellen

[krbonner]

Hi, Ellen!

I'm seeing McKenna (neuro-ENT at MEEI) and Barker (neurosurgeon at MGH) for a translab surgery scheduled in Sept.  I'm pretty sure this is Paul's team of docs, too.  While I haven't *actually* had treatment yet, I've been very impressed with both of them.  McKenna is following several hundred watch-and-wait patients in his practice alone.  And the McKenna/Barker team does an average of 2 AN surgeries a week.  They've got loads of experience.

If you can consult with them, I'd recommend doing so.

Katie

[ppearl214]

Ellen,

You are on about Starbucks! Will be great to meet you!

Katie, fabulous recommendation.. as I know CrazyKat/Paul would say the same (after my numerous talks with him about the MGH team). Also can't go wrong with the B/W gang (heck, the admin staff even gets me coffee if dr is stuck in surgery while I wait in exam room).  I have also spoken to other brain tumor surgical patients at B/W in the dr's waiting room... OMG, what they share with me about the care, their procedures, their thoughts on Drs Black and Claus. 

Let me put it this way.. if my CK didn't work (gawd forbid, as I'm only 2 mos post treat and waiting to see if it worked) and I have to go micro-surgery, in no way will I hesitate to have the B/W gang remove it for me. 

Hoping you both are doing well and hanging tough. Sending huggles to you both!
Phyl

[BostonJake]

Hi,
Wow, I just read through this thread for the first time in months!  Amazing to see how many people in my area are being treated at MGH.  I just got home after day 8 of Proton Therapy, and so far, all is going just fine.  I got a little wigged out about the mask at first but as long as I keep thinking about Fly Fishing in Honduras, I'm fine.  I wanted to comment about Martuza/Mckenna/Loeffler and all the staff at MGH.  I've been really impressed by them.  All are great to return calls, emails and address any concerns.  I really never expected a group of doctors to be as caring and understanding as these guys.  Very impressive with MGH all around.  Even the $4 valet parking!

[ppearl214]

Jake, there have been requests here from newbies looking for Proton info. Other than you, I really am not familiar with the process and such. Is there someway you can share your experiences at MGH for Proton?  Maybe in the Radio-Sugery forum?  Not sure if one has been started there.

Hang in there and thrilled you are so happy with MGH... we live in a great city for all of these options available to us! 

Phyl