ANA Discussion Forum
Useful Information => Physicians => Topic started by: wasky on May 06, 2010, 05:53:24 pm
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Recently diagnosed with 3.5cm an and am in the process of finding the doctors I'd like to perform my surgery. My research has me going with the translab approach as my hearing has been gone for 15 years. Have appointments to see Dr. Oh and Dr. Mason from Baystate Medical Center, also Dr. McKenna and Dr. Barker at MEEI. I would appreciate any information you could pass on. This is a very difficult decision to make. I am also working on my "question" list. Thanks again for your help!
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I suggest you do a search on the Dr's there are many of us from that area and there have been many discussions.. I've only been on here a few months and have heard Dr. McKenna's name a whole bunch.
The only thing I can say beyond that is to make sure you get a couple opinions, I'm not sure of the size of your AN, but there are many great Dr's in the Boston Area.
Liz
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Hi wasky and welcome. Will try to help give you the "guided tour" of treatment options for Metro Boston.
You have already learned about MGH/MEEI. I have, first hand, met soooo many that had their AN treatments with Barker/McKenna. If you go to the forum home page, do a "Search" option for Barker, McKenna, Mass General, MEEI, etc... you will see MANY conversations that will end up in your search results. Folks here have been great about reporting outcomes, potential after affects, etc, so the forums are a VERY valuable resource for the historical info regarding their work. Too many that participate on the forums for me to count, but some that come to mind are CrazyKat, jcinma, kbonner, etc, just to name a few. I have met them many many times over the years and can't even tell they had brain surgery! :)
Brigham/Womans..... Dr. Peter Black's team is top notch. He has been doing a great deal of international traveling recently and Dr. Elizabeth Claus and the rest of the team are assisting with his procedures. Now, what I can share is this.... Dr. Claus was (and is) my first NS on my AN journey. Honest, down to earth, hand-picked protege of Dr. Black. FYI.... she is now (officially) a member of the ANA USA Medical Advisory Board (noted on the ANA home page) and I'm thrilled to see her join the ANA team. I've known her for 5 years... and would recommend her in a New York minute. gingerbread6 (on this forum) just had her surgery with Dr. Black.. and is doing follow up with Dr. Claus. I believe she is in agreement with me about this overall statement.... a terrific resource as well.
Tufts University. I know of Helga (here on the forums) that had her recent surgery there. I know of someone else that recently had their surgery there as well (he is not active on the forums but have spoken to him/his wife on the phone as I'm a member of the ANA Willing-to-Talk list). Both folks are reporting good outcomes but some after affects that are not uncommon to the surgical procedure.
Since surgery is the route to be done (ie: AN too large for radio-treatments), I know of many that had radio treatments in Boston (such as myself) and know that the neurosurgeons affiliated with the radio-teams are top notch as well.
We are blessed to live in a medical mecca here in Metro Boston.... so, many, such as myself, do not see the need to travel elsewhere (and to endure the expenditures, esp. in today's tough economic climate). Bay State Med and UMass Medical are also both top notch.... for me, I'm kinda partial to the facilities in downtown Boston.
So, I hope this helps. My suggestion would be doing the "search" option here to get a feel for what everyone is reporting. I have met (face to face) far too many that have been treated locally.... and most of them are here on the forums and more than happy to share their experiences with you.
Hang in there... and again, welcome!
Phyl
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Wasky,
There is nobody better than Dr. McKenna. He directed me to Dr. Loeffler at MGH for Proton Radiation because to quote Dr. McKenna, surgery to remove my tumor would "guarantee damage to the facial nerve." I'm doing great 4 months later. Hearing has improved.
Good Luck!
Laura
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I'll be meeting with Dr. McKenna and Dr. Barker at the end of the month. I met with Dr. Oh & Dr. Mason they were very nice and came across quite confidant but I'm really not sure what I should be looking for, I did ask questions. I look forward to meeting Dr. McKenna & Dr. Barker. After meeting with two different teams perhaps I'll understand better the difference. I appreciate all the input everyone has been giving!
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Hi Wasky,
Are you from Western Mass? I am from Chicopee and am currently W&W under the care of Dr. McKenna in Boston. Good luck and let me know who you choose.
LisaP ;D
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Good luck, Wasky.
From what I know, all these doctors would be great choices. A lot will depend on you and the "gut" feeling you get from them during your consultation.
Not every doctor is for every patient. Although I absolutely love my neurotologist, I know some who decided he wasn't the right doctor for them while others totally agreed with me. You'll know when things are right for you - and that's the important thing.
Jan
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LisaP, yes I'm from Western Mass...Pioneer Valley area. I actually viewed the tumor today, it looks so large, how did I not know it was there? On the 24 of this month I'll be meeting Dr. Barker and Dr. McKenna. Thanks again for all the input everyone is giving!
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That's great keep us posted on what the Dr's say.
Good luck and hang in there!
Liz
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wasky,
Good luck with your meeting with Dr. McKenna, keep me posted due to I also see him. When I was dx back in March of 08, I saw an ENT in Holyoke, a Dr. Petcu who sent me to Boston due to he stated McKenna was the best. I had no idea, just went on his word. I do not like the idea of traveling but what can you do. Do you like Dr. Mason?
LisaP ;D
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I had translab surgery with McKenna/Barker in 2006. Quite frankly, I cannot say enough good things about them. McKenna is top-notch and a great guy to talk to and I think he has enough experience that I completely trust whatever he recommends. Dr. Barker is, well, a brain surgeon. His interpersonal skills are lacking, but his surgical skills are great. My tumor was 2.3 cm at the time of surgery, and I came away with no lasting side effects other than deafness (my hearing was 95% gone before surgery anyway). No headaches, no facial nerve damage, no balance issues.
While I'm sure there are several doctors in the Boston area who would do well with your surgery, I have no reservations about recommending this team. As for questions to ask, my primary focus when I was at the same place you are was to grill them about the likelihood of various outcomes from the surgery - mainly, I wanted to minimize the chances that my facial nerve would be damaged.
Good luck. Please do let us know how your appts go.
Katie
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Okay, not what I expected. Went to Boston and met with Dr. McKenna and Dr. Barker. From all that I've researched and from those I've spoken to my thinking was more towards the translab approach. I was thrown a curve ball as Dr. Barker is going for the retrosigmoid approach. I didn't walk away truly understanding why he preferred this approach. Also, it was explained that results regarding both procedures pretty much have similar outcomes regarding headaches, csf leak, and facial nerve issues.
Dr. McKenna and Dr. McCall went into greater detail. It was explained the tumor is very involved with both the mushroom and stem part of the brain and it was felt the retro approach would give better view of the brain stem and the translab would hinder the view as it is located behind the tumor. I did like that all agreed to do a partial if the facial nerve is too involved as the tumor is fairly large (3.5cm).
I'd love to hear feedback regarding my concern. I'm not sure if my concern is due to hearing more negative about retro vs translab or was I more prepared to hear the word translab? Maybe this is what has me confused, anxious, etc. It was made clear Dr. Barker is one of the best. I want to go into this feeling no regrets and understand the doctors are there to work towards getting the best possible outcome.
Thanks all for any help!
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Wasky -
at times there do seem to be negative things on the Forum about the retrosigmoid approach, but let me reassure you that everyone is different and has a different AN journey.
I had retrosigmoid and had no CSF leak, experience no headaches, only had slight facial nerve damage for a day or two post op, and except for SSD, have had no permanent negative effects from my AN surgery.
I don't really consider the SSD to be a negative effect. I'm grateful that my docs removed my entire tumor and once I got my BAHA, things for the most part, are back to normal in my life.
This is just my experience, but I wouldn't let the doctors' preference for retrosigmoid over translab concern you too much.
Best,
Jan
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As you well know, everyone's particular situation and AN is different. If the surgeons are saying that retrosig is what they'd recommend for you in your particular situation for your particular AN, my personal inclination (if I were in a similar situation) would be to trust that judgment. McKenna and Barker have done hundreds and hundreds of AN surgeries. I find it reassuring that they really do evaluate each person individually and want to do what they feel is best on a case-by-case basis.
But only you can decide if you're comfortable with their ideas. If you would feel better after getting another opinion, you should definitely do that.
Good luck!
Katie
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Wasky, I was basically in the same boat as you. My AN was 3.5 X 3.4 X 3.5 cm. I was convinced that I should have translab surgery since my hearing was mostly gone on the AN side anyway and I wanted to avoid any facial nerve problems. However, my surgeons felt that because of the position of my AN (pressing brainstem) that the retrosigmoid approach gave them the best angle and they were confident that this was the best approach in my case. My doctors had a lot of experience in successful AN surgeries, so I put my trust in them and it worked out great for me. They left a very small sheath of the AN on my facial nerve so as not to do too much damage. It worked as I now have total function on the AN side of my face. I also do not have any problem with headaches as has been mentioned by some that do.
Your doctors come highly recommended...I personally would put my trust in them. However, if you are not comfortable, you certainly have the right to seek another opinion. Good luck and keep us posted.
Patrick
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I know this is a tough decision to make and these Dr's are top notch, but if you're not comfortable please go get another opinion. Send the MRI's to HEI, they will give you an opinion over the phone.
You should feel comfortable with your decision, so until you do keep on searching and get the answers you need. Again, many of us agree that this was the toughest part...once you get that "gut" feeling you will know what's best for you in your individual circumstances.
Hang in there,
Liz
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I'd like to thank you all for your input. I am now awaiting a date for the surgery...with Dr. McKenna and Dr. Barker. To Texsooner, our situations do sound similar with tumor placement and I thank you for your input. Its nice to hear its okay to think towards one procedure and then understand it might not be the best choice after all. Having faith in the doctors is also what is helping. Thanks again all!!
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wasky, you are in terrific hands at MGH/MEEI with Barker/McKenna as your team! Please keep us updated and we'll be following along!
Phyl
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You'll be in great hands. Please let us know when you're scheduled!
One note - if you're dealing with Milli at Dr. Barker's office (she's his admin/office manager - at least she was a few years ago), you need to be persistent to get anything from her. It usually took me several phone calls to get the forms I needed from her, answers to questions, etc. Never had those issues with McKenna's administrative team, and the nurses in McKenna's office were amazingly responsive when I had questions post-op.
Katie
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Thanks for the heads up (krbonner) regarding Dr. Barker's office. I was wondering why I hadn't been called this week regarding appointments. I'll be calling them first thing Tuesday morning. I want to get the date set and feel like I'm moving forward with this. Will keep you informed.
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wasky,
Good luck and keep us posted, I too see Dr. McKenna, let us know when the big day is. What made you steer away from Western Mass? Just curious. I am from Western Mass and am seeking treatment in Boston only because my ENT sent me there.
LisaP ;D
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Barker/McKenna/McCall grad here, heading down for belated one year follow-up on Wednesday.
Definitely want them to have the best view.
I think Mili "retired", so no worries there, but be persistent and flexible. I doubt they'd bump your surgery date due the size of your tumor, but it can happen. Be proactive, follow-up on bureaucratic matters, but most important of all . . .
TAKE MUFFINS into surgery. (Read my story NancyMc's Spa Day: Lipo and a Face Lift or something like that from March/April '09).
Good luck.
Nancy