Author Topic: ANY INFO ON DR. POE/DR. GOPEN IN BOSTON????  (Read 5404 times)

TMARIE

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ANY INFO ON DR. POE/DR. GOPEN IN BOSTON????
« on: May 21, 2007, 07:03:09 am »
Hi Everyone,

My name is Tina and this is my first post.  The love of my life (43 years young) was diagnosed two weeks ago with an 8mm x 7mm AN.  He had been having hearing problems for a few years and works as a welder at the shipyard in NH.  The clinic there advised him after a yearly hearing test to have an MRI done for that ear.  Needless to say we were speechless when we got the results and left with a lot of questions..(after we came out of our fog). 

I want to say that while I delved into finding out anything I could on this diagnosis (we knew nothing), I came across this forum.  I have been printing out tons of pages from different topic from here for the last week.  David is not a computer person (unless it has to do with John Deere or farming..:) and I read it to him when I can get him to sit down for a little while at night.  What a difference in everything concerned has this made for both of us!  David is the worst kind of worry wort there is (he says he inherited it from his Dad).  That coupled with going through a very natural cycle of emotions, which all of you are well aware of, was litterally eating him alive.

When we got the diagnosis, the doctor also had made an appt for us to see Dr. Poe & Dr. Gopen on June 18th in Boston.  He made it before we had even found out the results of the MRI.  I would really like to hear any comments or anything anyone knows of concerning these two Dr's.  Dr. Gopen is the one who we will be dealing with from what I was told.   We also got a call saying that our appt was bumped up to June 1st due to the Dr being in surgery on the 18th.


Again, I wanted to let you all know how much you have helped both of us already and we are very greatful.  Thank you.

David is leaning torward microsurgery.  He knows that it is in his head and he wants it out and done. 

I just want him to be healthy and be able to do what he does now.  He is a very hard working man.   He is a welding supv @ 60 hrs a week.  We have goats and pigs, chickens, geese, ducks a barn cat, an old lady cat, three yellow labs and a 4 mo old pug.  He gets up at 3:30 every morning to do the dishes (he likes to), take the dogs for an "L, M, N, O...", feeds the animals and brings me coffee in bed, before we go to work.  (We work at the same place) When he gets home we take care of the animals, vacumn (every day, we have 4 dogs!!!!), he mows in the good weather @ 20 acres, and heats the house with his wood master, which means he is out cutting down trees on our land and clearing lots for the next year.  He never stops!!!!  And he is very  happy like that.  I am hear to get any information that I can to make his road and ours together easiest that it possibly can be through this.  As well as take what I need (emotionally) from all of the wonderful postings.

I appreciate any help  you  can give us.

Thanks again,
Tina Marie & David John

krbonner

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Re: ANY INFO ON DR. POE/DR. GOPEN IN BOSTON????
« Reply #1 on: May 21, 2007, 08:02:12 am »
Welcome, Tina.  I'm so sorry that you and your husband have to join our exclusive club, but you'll fnd a wealth of information here.

Fortunately, the Boston area has a lot of experienced doctors who are used to dealing with ANs.  These growths are rare enough that one of the keys to successful treatment is to find someone who has a lot of experience with them.  For many people, that can involved traveling across the country.  Personally, I was happy to be treated in Boston and have had a great outcome.

While I don't have personal experience with Dr. Poe, I have met several people who have seen him and have been very happy with him.  I am not personally familiar with Dr. Gopen. 

Many of us in the Boston area have been treated by Dr. Michael McKenna at Mass Eye and Ear Infirmary.  He is a neuro-ENT and will discuss all methods of treatment (watch-and-wait, radiation, microsurgery), including the pros/cons for each individual.  With Dr. McKenna's support, I orginally elected to watch-and-wait (my two kids were 3 year and 4 months at the time and I couldn't face treatment right then!).  Unfortunately, my AN grew rapidly so I moved forward with surgery after a year, performed by Dr. McKenna and Dr. Barker (neurosurgeon at Mass General, affiliated with MEEI).  I'm now 8 months post-op with no long-term side effects other than being deaf of my AN side (a known outcoe going into surgery).  Needless to say, I'm very happy with my choice of doctors!   :D

There are other options in the Boston area.  If you want to consider radiation, there are great, experienced doctors at Beth Israel (Cyber Knife), Dr. Noren in Providence RI (Gamma Knife), and at MEEI/MGH.  And I'm sure I'm missing out on some other experienced doctors in the area!  I certainly respect your husband's need to have the bugger out (there are many who feel like that!), but I also think it's worth finding out about the pros and cons of all treatment options. 

Your husband's AN is small, so you do have time to fully research all your options (which it sounds like you're doing).  My suggestion would be to meet with several doctors if you can to find the doctor and treatment approach you feel most comfortable with. 

Please let us know what else we can do to help.

Katie
« Last Edit: May 21, 2007, 08:07:45 am by krbonner »
diagnosed June 2005
2.3cmx1.6cmx1.4cm left AN
translab Sept 13, 2006; Drs. McKenna and Barker in MA (MEEI/MGH)

ppearl214

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Re: ANY INFO ON DR. POE/DR. GOPEN IN BOSTON????
« Reply #2 on: May 21, 2007, 09:01:06 am »
Hi Tina and welcome... glad to see you all here... Katie (  :-* ) did a great job of sharing info with you.  Many of us in the area that are more than happy to help.  As Katie noted, you all have lots of time to research and glad to see the forums are helping.

As one pug owner to another (see pic below).... welcome..... and know where here to help.
Phyl


"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

TMARIE

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Re: ANY INFO ON DR. POE/DR. GOPEN IN BOSTON????
« Reply #3 on: May 21, 2007, 11:35:44 am »
Thank you both for replying to me.  We are going to our appt on the 1st, and depending on how it goes, we will definetly get a second opinion until David is compfortable with his decision.   He has gotton to a point where he is still very nervous and scared, but he is feeling much more positive after reading postings from this forum.  I am very greatful to have this support as I know he is. 

Thank you Katie, very much.

And Phyl, we cannot believe that she/he??? is a pug!!! Looks like a girl to me??  How much does your pug weigh?  She looks adorable!

Thank you both,
D & T

jcinma

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Re: ANY INFO ON DR. POE/DR. GOPEN IN BOSTON????
« Reply #4 on: May 21, 2007, 03:11:30 pm »
Dear Tina Marie,
I can not say enough about Dr. Poe.  He is a wonderful surgeon and he will give you all the time you need to get all your questions answered.  I strongly recommend him as well as Dr. McKenna.  I believe that they are the two ENTs to go to for surgery in the greater Boston area.  I too am not familiar with Dr. Gopen.  Katie's advise was right on-you have options because David John's tumor is considered small and you have time.
Wishing you and David John the very best possible outcome-
Jane

Phyl-
You and Beanie look mahhvelous!!
1cm AN removed (lost hearing) 11/96
3cm reccurrence debulked to preserve facial function 2/05
FSR 4/05
Mass General Hosp. Boston MA

TMARIE

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Re: ANY INFO ON DR. POE/DR. GOPEN IN BOSTON????
« Reply #5 on: May 22, 2007, 10:18:23 am »
Jane,

Thank you for posting!  When I told David he just looked at me and gave me two thumbs up.  When you see someone you love go through something you cannot control or fix for them (mother of three..:), it means so much to help give them hope and feel safe.  Thank you so much for helping me, help him.  We are very anxious to meet with someone that we know will be able to help us move forward and it is a good feeling to have some positive feedback on this doctor.

If you don't mind my asking, what size tumor and what procedure did you go with?  Is there diffent surgical procedures that they use or is it only one when you choose surgery?  I know they can go behind the ear or through the canal??????????

Again, thank you for your words and for posting.  It means a lot to us.

D & T

ppearl214

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Re: ANY INFO ON DR. POE/DR. GOPEN IN BOSTON????
« Reply #6 on: May 22, 2007, 05:35:51 pm »
thanks dahlink Jane.. .you wook mahhvelous too! :)  Tina, yep, she's a she, 10 yrs old and rules the house... oh, well :)
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

Bigbear

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Re: ANY INFO ON DR. POE/DR. GOPEN IN BOSTON????
« Reply #7 on: May 22, 2007, 06:59:18 pm »
Yes, I know Dr. Quinton Gopen, he read my high-resolution MRIs and has been extremely good about helping me get appointments with specialists (Black @ B&W, Barker @ MGH, and Mckenna) 

I like Quinton a lot - he is quite knowledgable, very straightforward, and he ALWAYS answers emails sent to him.

TMARIE

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Re: ANY INFO ON DR. POE/DR. GOPEN IN BOSTON????
« Reply #8 on: May 23, 2007, 07:24:36 am »
Morning Bigbear,

That is good to hear.  David will like that.  He is a very straight shooter himself, it gets him in trouble often ;) I am hearing the name Mckenna an awful lot.  A lot of good things.  That is cool.  Thank you very much!

To all: I have a question that may sound stupid to everyone.  We have seen his ENT here in NH, on June 1st we go to Boston to meet with Poe/Gopen.  If he decides to go with the microsurgery & feels compfortable with these doctors, are there other tests or doctors he will need to see?  What can we expect after that meeting? 

Phyl: She is adorable.  So much love to give in that breed.  She's going to help Daddy get better.... ;)

Thanks so much!  D & T