Author Topic: Anyone out there in Massachusetts?  (Read 8256 times)

Helga

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Anyone out there in Massachusetts?
« on: January 26, 2009, 04:38:57 pm »
Hi, just diagnosed with this unilateral vestibular Schwannoma, size 2.2 cm a couple weeks ago. I have minimal hearing loss and no other symptoms. Still weighing my options, but radiation, and especially Cyberknife, look pretty good. I live in Western MA and would love to talk to someone, or at least hear from people who had their procedures done in MA.
Thank you for your time!

Kaybo

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Re: Anyone out there in Massachusetts?
« Reply #1 on: January 26, 2009, 05:28:04 pm »
Hi!
I am not from Maryland nor do I live in Maryland now, but my mom's name is Marilyn (& today is her 70th b-day) - does that count for anything??
Seriously, I just wanted to welcome you - I know someone will come along that can help you out more!!

K   ;D
Translab 12/95@Houston Methodist(Baylor College of Medicine)for "HUGE" tumor-no size specified
25 yrs then-14 hour surgery-stroke
12/7 Graft 1/97
Gold Weight x 5
SSD
Facial Paralysis-R(no movement or feelings in face,mouth,eye)
T3-3/08
Great life!

ppearl214

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Re: Anyone out there in Massachusetts?
« Reply #2 on: January 26, 2009, 08:24:05 pm »
Hi and welcome. There are many of us in Mass and many from W. MA that participate on this board.  I am one of 2 that are active on this forum that was treated at Beth Israel in Boston with Cyberknife.  Another is colorlady, who was treated there last year.

As for other AN treatments, many here (too many to name.... far too many) have had treatment in Boston at MGH/MEEI (radio and surgical treatments).  I am sure they will turn up here to participate.  You can also do a "Search" option on the Forum home page to seek out specifics for Boston (and NE) treatment options.

Again, welcome.... glad to help if I can.

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

Helga

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Re: Anyone out there in Massachusetts?
« Reply #3 on: January 27, 2009, 02:28:05 pm »
Thanks for replying, and no, it's MA for Massachuchesetts, not Maryland.

Today I met with a radiologist at Baystate Medical Center in Springfield, MA, who uses the Linac BrainLab system. I guess I am just apprehensive going to Springfield vs. Boston, somehow I have this idea that bigger is better. Is that the wrong approach? I guess what matters is who is on the team, and how many AN procedures they have done, yes? How many "second opinions" do people get in general - or is there no "general"?

ppearl214

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Re: Anyone out there in Massachusetts?
« Reply #4 on: January 27, 2009, 04:07:11 pm »
well, I'd do MD again.. great soft shell crab sandwiches! :)

Ok, try this... I found an older thread started by tsl (a very very dear lady  :-* ) who started this thread when she began her research:

http://anausa.org/forum/index.php?topic=2869.0

In this thread, there is notation of Baystate Medical and their team.. and many other responses. I do know that tsl had her treatment last year at MGH (Proton Radiation) and as of last check, she's doing fine.

so, this may be a good starting point/read.... Just a thought.

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

LisaP

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Re: Anyone out there in Massachusetts?
« Reply #5 on: January 27, 2009, 06:19:01 pm »
Hi,

I'm from Western Mass, Chicopee to be exact.  Where are you from?

Anyways, I was dx with a small AN back in March of 07.  I met with an ENT, Dr. Petcu from Holyoke who sent me to Boston to the Mass Eye and Ear in Cambridge.  He told me to go only to Boston because that is where the experience is.  He also told me that at BSMC there are not any doctors experienced enough that can handle this delicate tumor because of location.  As he put it "you need to see someone who can take care of this problem with his eyes closed, someone who has done this surgery (if that is the option that you are seeking), 100 million times.  So I am due to go again to Boston for my third MRI on Feb 4th.  I am currently on the watch and wait. 

My advice to you is don't make a quick decision, read all that you can on this forum.  I have and still get confused but know that someday I will have to make a decision that could change my life.  My life has already changed back in March.  Hope to hear from you soon!!

LisaP ;D
LisaP
AN at 12mm by 7mm by 7mm,  shown no growth as of September 26, 2013, 5.5 years into this journey.  Next MRI 2015. Doctors: Mason and McKenna.  Continue to W&W

Seal

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Re: Anyone out there in Massachusetts?
« Reply #6 on: January 28, 2009, 08:34:55 am »
Hi,

Welcome and join the group.   I was also diagnosed this month and am going throught the same process.    Depending on where you live in Western Mass, you also may want to consider shooting down Rte. 91 to New Haven.    I'm meeting with these two following doctors in New Haven as well as getting other input from MEEI and elsewhere.    Here are the links:

http://www.ct-neurosurg.com/ourdoctors.htm
Dr. Goodrich

http://www.entmedicalsurgical.com/john_kveton.html
Dr. Kveton

They may actually be closer and easier to you than running into Boston.    Good luck, and you've found the right place to get plenty of info.

Steve
Diagnosed 1/14/09 - 2.4cm AN right side --- about 70% cycstic
Retrosigmoid wiih McKenna & Barker - total removal successful on April 13th. 
Issues: balance, facial & mouth numbness, hearing loss right side
Results:   numbness gone, balance is good, SSD right side. Great results.

krbonner

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Re: Anyone out there in Massachusetts?
« Reply #7 on: January 28, 2009, 10:54:22 am »
Welcome!

As Phyl noted, there are many of us here from New England/Boston area. 

This is one of the rare conditions where, personally, I think consulting with several doctors is a worthwhile exercise.  There is an art to treating ANs an you need to find someone who you are comfortable with.

There are a several excellent options for radiosurgery in the Boston area, but I had surgery so can't really speak well to those.  For surgery, one of the primary doctors seems to be Dr. Michael McKenna at Massachusetts Eye and Ear Infirmary (he partners with some top-rate neurosurgeons at Mass General if surgery is needed).  I've lost count of the number of people I've met who see him.  He has many hundreds of active AN patients just in watch-and-wait mode.  (It's odd to think there are doctors out there for whom seeing another AN is a boring, everyday occurrence!)  I saw Dr. McKenna - and still see him for occasional post-op follow up appts - and have been thrilled with my care and outcome.

Good luck with your research.  It can be overwhelming, I remember.  The best thing you can do is gather all the information you can handle and then make a decision that works for you and your situation.  Every one of us is different and has different circumstances, though we can certainly do a lot to help each other.

Keep asking questions!

Katie
diagnosed June 2005
2.3cmx1.6cmx1.4cm left AN
translab Sept 13, 2006; Drs. McKenna and Barker in MA (MEEI/MGH)

Helga

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Re: Anyone out there in Massachusetts?
« Reply #8 on: January 28, 2009, 01:29:08 pm »
Hello, LisaP from Chicopee,
I live in Ware. I saw Dr. Mason as my ENT, then Dr. Oh, surgery, and Dr. Yunes, radiation, all at BSMC. Although all of them had no problems with me searching out second opinions, they did not encourage me quite the way Dr. Petcu did.
I feel that the size of my tumor gives me a little time, but not that much. And as everyone writes - it is confusing and there are no perfect options. At this time I will try to make an appointment with Dr. McKenna and go from there.
Dr. Oh does the translab surgery and he told me hearing loss would be 100% (and I still have good hearing). Dr. Yunes told me he had no one with facial paralysis/paresis in his 1 and 1/2 years of working with the proton machine. But - they just do about 8 procedures a year, and from reading, it seems that is not quite enough for experience. However, at MGH or Beth Israel - how many docs do how many procedures? I was thinking, just because they do a hundred or more a year at the facility, does the indvidual doc do that many?
Anyway, this site is incredible and everybody is just unbelievable helpful. I would greatly like to meet some of you if you are still meeting in April in Worcester, circumstances permitting.
Helga

Helga

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Re: Anyone out there in Massachusetts?
« Reply #9 on: January 28, 2009, 01:38:14 pm »
Welcome!

As Phyl noted, there are many of us here from New England/Boston area. 

This is one of the rare conditions where, personally, I think consulting with several doctors is a worthwhile exercise.  There is an art to treating ANs an you need to find someone who you are comfortable with.

There are a several excellent options for radiosurgery in the Boston area, but I had surgery so can't really speak well to those.  For surgery, one of the primary doctors seems to be Dr. Michael McKenna at Massachusetts Eye and Ear Infirmary (he partners with some top-rate neurosurgeons at Mass General if surgery is needed).  I've lost count of the number of people I've met who see him.  He has many hundreds of active AN patients just in watch-and-wait mode.  (It's odd to think there are doctors out there for whom seeing another AN is a boring, everyday occurrence!)  I saw Dr. McKenna - and still see him for occasional post-op follow up appts - and have been thrilled with my care and outcome.

Good luck with your research.  It can be overwhelming, I remember.  The best thing you can do is gather all the information you can handle and then make a decision that works for you and your situation.  Every one of us is different and has different circumstances, though we can certainly do a lot to help each other.

Keep asking questions!

Katie
Thank you, Katie. I am not sure if this is the correct way to respond. If it is not, would someone please clue me in? Helga

Helga

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Re: Anyone out there in Massachusetts?
« Reply #10 on: January 28, 2009, 01:39:53 pm »
Hi,

Welcome and join the group.   I was also diagnosed this month and am going throught the same process.    Depending on where you live in Western Mass, you also may want to consider shooting down Rte. 91 to New Haven.    I'm meeting with these two following doctors in New Haven as well as getting other input from MEEI and elsewhere.    Here are the links:

http://www.ct-neurosurg.com/ourdoctors.htm
Dr. Goodrich

http://www.entmedicalsurgical.com/john_kveton.html
Dr. Kveton

They may actually be closer and easier to you than running into Boston.    Good luck, and you've found the right place to get plenty of info.

Steve
Thank you so much for this information, this will be on my list after Boston. Helga

sgerrard

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Re: Anyone out there in Massachusetts?
« Reply #11 on: January 28, 2009, 11:11:59 pm »
Thank you, Katie. I am not sure if this is the correct way to respond. If it is not, would someone please clue me in? Helga

You're doing fine. :) 

If you don't want to quote someone, you can click Reply instead of Quote, and just make another post. If you do quote, you can delete part of it, or leave it all, depending on what you want. It's your choice.

Steve
8 mm left AN June 2007,  CK at Stanford Sept 2007.
Hearing lasted a while, but left side is deaf now.
Right side is weak too. Life is quiet.

Helga

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Re: Anyone out there in Massachusetts?
« Reply #12 on: January 29, 2009, 06:02:13 am »

If you don't want to quote someone, you can click Reply instead of Quote, and just make another post. If you do quote, you can delete part of it, or leave it all, depending on what you want. It's your choice.

Aha! That helps a lot!!! Thanks, Steve,
Helga
« Last Edit: January 29, 2009, 10:04:46 am by sgerrard »

krbonner

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Re: Anyone out there in Massachusetts?
« Reply #13 on: January 29, 2009, 09:56:51 am »
Quote
However, at MGH or Beth Israel - how many docs do how many procedures? I was thinking, just because they do a hundred or more a year at the facility, does the indvidual doc do that many?

I don't know about other doctors, but I was told that my surgeons (Drs. McKenna and Barker) were doing 1-2 surgeries a week when I was there 2 1/2 years ago.

Katie
diagnosed June 2005
2.3cmx1.6cmx1.4cm left AN
translab Sept 13, 2006; Drs. McKenna and Barker in MA (MEEI/MGH)

tsl

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Re: Anyone out there in Massachusetts?
« Reply #14 on: January 29, 2009, 10:15:44 am »
Hi Helga,
I'm from Western Mass. too.  I also met with Dr. Mason initially and discussed radiation with Dr. Yunes.  I'm going to send you a private message.

This is a wonderful site.  When I was first diagnosed, Katie suggested I go to "the brunch" in Worcester and that it would help.  I was feeling so down that I didn't go.  I couldn't see how it would help me.  That was a mistake on my part.  Since then I've been to several brunches.  Was it helpful?  Yes!  Was it supportive?  Yes!  Did I enjoy myself?  Yes!  I learned a lot from folks.  Everyone was very friendly and kind.

-Theresa (tsl)
« Last Edit: January 29, 2009, 02:26:51 pm by tsl »
AN diagnosed Dec 2006
Approx. size 9 x 6  x 4 mm
Proton Beam radiosurgery wtih Dr. Jay Loeffler (radiation oncologist) and Dr. Paul Chapman (neurosurgeon) at Mass. General on Nov.2, 2007

 


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