ANA Discussion Forum
Useful Information => Physicians => Topic started by: Michael R. on December 26, 2006, 01:18:46 am
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Hello,
I recently had my second MRI confirming a 9 x 8mm AN. which is a little larger than from the frist MRI in June. I was referred by my ANT to a Dr. Poe in Boston. Is anyone familier with Dr. Poe? Any advice would be appreciated, I am navigating in uncharted waters.
Thank you,
Michael
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Hi Michael and welcome. I am not sure of your age if you were originally seen at Boston Children's (I'm out on Rt 128/Northshore).
There is a wealth of AN treatments in the Boston area. I'm not sure how much AN treatment info you have read up but will try to help a little bit here:
Since your AN is considered small but growing (your's, at the same pace as mine), you do have options available to you.
1. Sounds like you have been in "Watch/Wait" mode as this was your 2nd MRI. You can continue this path and see what happens with its growth. This is definately the time to research.
2. Radiosurgery (a form of radiation but not "radiotherapy"). Boston offers many options, such as:
MGH: Proton Radiation (expensive and not a lot of background on its efficiency, but there are a few on this website that have had the treatment, including BostonJake, who just completed his at MGH). Here is a link for reference: http://www.massgeneral.org/cancer/about/providers/radiation/proton/whatis.asp
Providence and Tufts University both offer GammaKnife. ellenvig on this site just completed her Gammaknife at Providence with Dr Noren, a highly respected GK treatment specialist. I don't have the dr's names at Tufts in Medford, but also worth a look.  A link for Dr. Noren and his team can be found at: http://www.lifespan.org/svclines/profile/noren.htm. Here is the link for Tufts: http://www.nemc.org/GammaKnife/team.html
Brigham/Woman's does offer FSR/Novalis. Dr. Peter Black/Dr. Elizabeth Claus are heading the Neurosurgery and Brain tumor clinic there. If you do a web search on Dr. Peter Black Neurosurgery, you will see how world renowned he is and his background. Dr. Claus is his protege. A link for B/W's team is: http://www.brighamandwomens.org/neurosurgery/patient/braintumor.aspx
Beth Israel offers Cyberknife. As you can see by my sigline below, I had my CK treatment there last April.... and just saw my team there a month ago. We have confirmed that my AN is now starting to die (my Xmas present to me from my drs). Dr. Mehetaven is the lead dr (radio oncologist) and I cannot say too much thrilling words about him. Their link is:
http://bidmc.harvard.edu/display.asp?leaf_id=13361
3. Microsurgery, should you decide to forgo the radiosurgery route:
MGH... Fabulous team as many here can attest (Crazykat, kbonner, jcinma, etc). They are lead by a terrific team of Barker and McKenna (and I think Martuza). Here is the link to MGH Neurosurgery team (which also does a brief notation on the Proton radiosurgery protocol): http://brain.mgh.harvard.edu/therapies.htm#Pediatric
Again, Dr. Peter Black at B/W is also a forerunner in the local medical community for AN treatment, so either way, regardless if MGH or B/W, you are in fabulous hands.
I know this is a lot to absorb..... and know that we are here for you.... but it really is great that we have a wealth of medical treatment options right here in Boston. Many of us are happy to speak on the phones or on private emails if you care to learn more.....
Hang in there... be well.....
Phyl
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Hi, Michael!
Phyl did a fabulous job summarizing the Boston area options (**waving to Phyl across the pond**). There are a lot of experts in the area.
When my AN was originally found, my local ENT referred me to Dr. Michael McKenna at Mass Eye and Ear Infirmary. He has a current caseload of "watch-and-waiters" numbering in the hundreds. For a year after my diagnosis, I was happy to be watch-and-wait with a 1.8cm AN. However, after a year my AN had grown to 2.3cm and was starting to encroach on my brainstem. That's when I decided to move forward with surgery at MGH. And I have absolutely no regrets about that decision. I had a great outcome with no lasting side effects.
With an AN as small as yours, you still have all three treatment options available to you. I have no idea about Dr. Poe (are you still young enough to warrant seeing someone at Children's?), but I know Dr. McKenna works with all three methods of treatment.
Please feel free to contact me through private message if you'd like to talk more. I'm happy to discuss this by phone or email.
Take care!
Katie
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Hello,
Thank you Phyl and Katie for the information and support, greatly appreciated. I am in the "the watch & wait" que with Dr. Poe, he is on staff at MGH B&W in addition to Childrens. I no longer qualify as a child, at least by age, at this point in my life of 49 yrs. I am leaning towards surgery at this point, but I'm still weighing the options.
Michael
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UH OH! Not a child? How bout a child at heat? :-* I just got back from a trip with my mom for my reeval..she tried to tell the hotel lady I was a child LOL I'm 42 you think she'd let me grow up eventually! Michael Katie and Phyl are def. well informed when it comes to options in the Boston area.
What type of symtpoms are you having at this point?
Keep us posted along your path and know we're a big family and there for all! No question is too silly or repetitive!
Hugs, Michelle
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Michael,
Like Katie, I had surgery with Drs. Fred Barker, neurosurgeon at MGH, and Michael McKenna, neurotologist at the Masssachusetts Eye and Ear Infirmary (=MEEI). Dr. Poe is the other Ear Nose and Throat (probably also neurotologist) with whom Dr. Barker usually operates. Robert Martuza is chief of neurosurgery at Mass General. I think Jcinma may have had Dr. Poe, I 've never met him. But you are indeed in good hands. Any questions which occur to you, just ask, and if you want to speak, just send a message off forum.
Good Luck
Peanut
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FYI folks... Dr. Fred Barker is one of the physicians presenting at this year's ANA Symposium in July:
http://www.anausa.org/symposium_schedule.html
Phyl
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FYI folks... Dr. Fred Barker is one of the physicians presenting at this year's ANA Symposium in July:
http://www.anausa.org/symposium_schedule.html
Phyl
I really wanted to go to the Symposium. Now that I've read through the schedule, I'm commiting myself to going! ;D
Katie
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looks interesting alright! shame, too far to go...
Lorenzo
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My husband sees Dr. Poe and we really like him ...he had my husband see Dr. Barker then they confered on my husbands case and due to the delicate location of his An, next to the jugular vein or Carotiod atery (I don't remember) bot Dr.s decided the surgical risck too great and he had Rrton radiation at MGH...He goes back for an MRI next month to see if the AN is dying(fingers crossed) ...Dr. Poe does see patients of all ages(hubby is 52) and we were reffered to him but my husbands ent Dr. My husband has of course tinnitus and basicall has no hearing in the right ear at this point but luckily no other symptoms.
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Did any of you have surgery with either Barker or Black? I was wondering if MGH or Brigham would be the better place to go
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Dr. Peter McL Black is my doc at the Brigham (so is his protege Dr. Eliz. Claus). They are in the wings for my AN as well as Chiari. Great team.
I had radiation at Beth Israel Deaconess.....
I have not met with Dr Fred Barker but many here on the site had their AN surgical removal at MGH/MEEI. I have met many of these folks, face to face, and they are doing fantastic.
Either way, great teams.
Phyl
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Thank you, Phyl. They each give me very different prognosis which is why I am concerned. I appreciate your help.
Buzzy
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Hi Buzzy
Each doc, just like other professions, will give their own take on things. That is the difficult thing about our research for AN treatment options. Before my treatment, I searched out thoughts/inputs from many teams in the Metro Boston area (I'm on the N. Shore). One doc wanted to do surgery on my very small, non-symptomatic AN and take my hearing.... one wanted to radiate over a month with a technology, I found through my research, that did not offer a terrific proven success rate, I met with another that said they could take a 30 day treatment option, cut it down to 5 days and make it work and another team that felt that 5 days would do the trick.
It's all up to us to take this knowledge, given to us by the medical professionals.... then inquire to patients that have endured such treatments... and do a "pro/con" list for what would work best for our own situation.
Many have chosen the microsurgical route at MGH/MEEI and have done beautifully (too many for me to count). I know many that have had radio and did well. I know many that have gone either route and outcomes not as hoped. "Individual results may vary".
Suggestion.... if you are local to Metro Boston (or Mass).... we have a brunch coming up in Worcester on Oct 25 at Maxwells/Maxines. There is a discussion/thread in the "AN Community" forum about it and you are more than welcome to join us. This will give you a terrific first hand opportunity to meet, face to face, with others that have had surgery at MGH/MEEI... and with many that have had radiation... and in a non-stressfull environment (too much food!)... and at a reasonable price. Please see the thread there and if you'd like to meet up with us... and see firsthand how everyone is doing, you are more than welcome to join in. Here is the link to the thread... see last post done by me on page 4 that also gives link to Maxwell's.
http://anausa.org/forum/index.php?topic=9822.45
Phyl
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Great Buzzy! Hope you can make the brunch. With both locations (B/W and MGH/MEEI), you truly are in fantastic hands, regardless of which one. Dr. Elizabeth Claus (Dr. Black's "protege") is now becoming heavily involved with the AN community and and is following me for my post-AN treatment (as a surgeon in the wings should my CK not work..... but as of now... I've done beautifully with it... she has also noted it to me, based on my films).
Hoping you make the brunch so you can inquire to others that have been treated at the facilities. When you see, first hand, how well everyone is doing in their post-AN journey and what the Metro Boston medical community has done for all of us AN'ers treated locally, I honestly believe (IMO) that you will be impressed.
Phyl
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I did have my surgery with Peter Black and believe there IS a huge difference between the care he gave me compared to what I would have received from other highly regarded surgeons. I am hesitant to write details here, but anyone who wants to email me, I will be glad to be more specific and explain why. As an aisde, Black was just elected President of the World Federation of Neurosurgeons, and I certainly see why.
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Hey Buzzy
Great news on Dr. Black. I know of others here that recently met with him for their AN's and found instant comfort levels with him. I didn't know about his new "role" and thanks for sharing it with us.
Still hoping you make the brunch on the 25th. :)
Phyl
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Just to throw one more name into the ring - Dr. Heilman at Tufts Medical Center. As we all know you have to "click" with your doc or it's not going to work. Just make sure you do a few interviews and you will find the right one for you. For me it was definitely Dr. Heilman. Great surgery and excellent care at Tufts (for the 2 days I was there).
Best of luck, Helga
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Late to this dance but figured I'd chime in.
I can't say enough about the McKenna/Barker team...especially Dr. McKenna....not only an extraordinary surgeon but also an extremely caring and compassionate human being.