Author Topic: Newly diagnosed in MA  (Read 12998 times)

Susan A

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Newly diagnosed in MA
« on: August 18, 2011, 07:49:39 am »
About a month ago my husband and I both lost hearing in our left ears - we both ended up at the ENT's office. He put us on prednisone, which fixed my husband's hearing, but not mine. Thinking about it, we realized that I've been losing my hearing for at least a year. The ENT did a bunch of blood tests and referred me for an MRI, telling me there was a less than 1% chance he was going to find something serious. Meanwhile, I did my research and figured out that I probably DID have an acoustic neuroma because I have a rare genetic condition (ring chromosome 22) that apparently predisposes me to acoustic neuromas. (Unfortunately, I didn't know about that predisposition until last week, AFTER I'd seen the ENT and he didn't know I had ring 22, tho it's so unusual he didn't know what I was talking about when I told him about it this morning anyway!)

I received a call from my ENT this morning to tell me that the MRI I had done on Tuesday showed an acoustic neuroma and an occipital meningioma. At this point I don't know the size of the neuroma. He is referring me to Dr Mason in Springfield, MA, but having already done some research here over the last couple of weeks, I want to see Dr McKenna at Mass Ear & Eye for a second opinion.

Feeling very thankful we have halfway decent health insurance!
2011 8 x 7 mm AN, & 20 x 22 mm M found, both on the left. Mosaic NF2 diagnosed. Some hearing loss
2014 hearing 30% on left, now using hearing aid (HA)
2015 Now have CROS HA - no longer hear enough for HA to be useful in AN ear
2016 Use an FM system on occasion at work to supplement HA

Lynn Mc

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Re: Newly diagnosed in MA
« Reply #1 on: August 18, 2011, 09:28:58 am »
Suesan,

Sorry to hear that you are joining our group.  AN's are not any fun.  There is definitely a lot of info here for you.  I went to Dr. McKenna and have total confidence in him (although I hear he is out of the office for a bit).  If in fact you do need treatment you will want to go to Boston, not Springfield.  Although Springfield was much closer for me I opted for Boston with no regrets.
Good luck on your journey. 
Translab 01/22/10.  12 x 11.7 x 8.2 mm.
Dr's McKenna/McCall at Mass Eye & Ear,
Dr. Barker at MGH. 
SSD - No other significant problems post surgery, just some minor inconveniences!  Yipee!!
BAHA implant 04/08/11 Dr. Merchant
BAHA Gotcha 07/25/11
"Life is Good"

Susan A

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Re: Newly diagnosed in MA
« Reply #2 on: August 18, 2011, 09:32:05 am »
Thanks Lynn - hmm, maybe that's why the 'Make an appointment' link on Dr McKenna's page is not working!
2011 8 x 7 mm AN, & 20 x 22 mm M found, both on the left. Mosaic NF2 diagnosed. Some hearing loss
2014 hearing 30% on left, now using hearing aid (HA)
2015 Now have CROS HA - no longer hear enough for HA to be useful in AN ear
2016 Use an FM system on occasion at work to supplement HA

Lynn Mc

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Re: Newly diagnosed in MA
« Reply #3 on: August 18, 2011, 09:34:40 am »
There is another Dr in that office.  Your best bet is to call down there,  1-617-724-8772.  where are you located in MA?
Translab 01/22/10.  12 x 11.7 x 8.2 mm.
Dr's McKenna/McCall at Mass Eye & Ear,
Dr. Barker at MGH. 
SSD - No other significant problems post surgery, just some minor inconveniences!  Yipee!!
BAHA implant 04/08/11 Dr. Merchant
BAHA Gotcha 07/25/11
"Life is Good"

Susan A

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Re: Newly diagnosed in MA
« Reply #4 on: August 18, 2011, 11:10:44 am »
I'm in the Pioneer Valley - north of Springfield.
I'm thinking maybe I should call the Cranial Base Center at MGH - I heard Dr Barker there works with Dr McKenna anyway. My PCP is away and I won't be able to talk to him until next Tuesday.
2011 8 x 7 mm AN, & 20 x 22 mm M found, both on the left. Mosaic NF2 diagnosed. Some hearing loss
2014 hearing 30% on left, now using hearing aid (HA)
2015 Now have CROS HA - no longer hear enough for HA to be useful in AN ear
2016 Use an FM system on occasion at work to supplement HA

lholl36233

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Re: Newly diagnosed in MA
« Reply #5 on: August 18, 2011, 05:14:09 pm »
Hi Susan,

I was diagnosed with an AN at UMASS in Worcester until, thanks to the good people on this forum, I found Dr. McKenna who told me it was a hemangioma.  He sent me to Dr. Jay Loeffler for proton radiation.  My hearing has improved and my hemangioma was stable at the one year MRI.

I believe you need to see Dr. McKenna to be referred to either Dr. Loeffler or Dr. Barker.  I'd call his office to schedule an October appointment.  ( I hear that is when he is back.)  He is worth the wait.

Laura
Proton Radiation for my hemangioma at MGH December 2009.  Hearing has improved.  Doing great!

Susan A

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Re: Newly diagnosed in MA
« Reply #6 on: August 18, 2011, 08:28:04 pm »
Thanks for the phone # Lynn :-)

Laura, my husband asked me tonight if there wasn't someone I could see in Worcester rather than traveling to Boston - I told him you recommended a trip to Boston!
2011 8 x 7 mm AN, & 20 x 22 mm M found, both on the left. Mosaic NF2 diagnosed. Some hearing loss
2014 hearing 30% on left, now using hearing aid (HA)
2015 Now have CROS HA - no longer hear enough for HA to be useful in AN ear
2016 Use an FM system on occasion at work to supplement HA

lholl36233

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Re: Newly diagnosed in MA
« Reply #7 on: August 19, 2011, 02:47:20 am »
I live next to Worcester so you can imagine it was not convenient to go to MGH every day for 6 weeks for proton radiation.  I have no regret.  I'd do it again.

I understand you are further away but you shouldn't waste your time in Worcester.  MGH is so much better equippped to handle this.  Let us know when your Dr. McKenna appointment is scheduled. 

 ;)
Proton Radiation for my hemangioma at MGH December 2009.  Hearing has improved.  Doing great!

ppearl214

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Re: Newly diagnosed in MA
« Reply #8 on: August 19, 2011, 03:50:56 am »
Hi

I thought Dr. McKenna or Dr. Barker were "out" on leave (ie: ill) or such right now. There are other posts here re: this and not sure which one... just FYI.

As one that was treated in Boston (yes, I live closer to town, not Pioneer Valley) but knowing we have a medical mecca so very near would not deter me from seeking out terrific treatment for my ailment.  All forms of AN treatments (ie: surgical, all forms of radiation, etc) are offered in Boston so honestly, for the area, I would not hesitate. I know of many that have traveled here.  My treatment was 5 days.  Some are 1-3.  It all depends.  just my 2 cents early on a friday morning....

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

krbonner

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Re: Newly diagnosed in MA
« Reply #9 on: August 22, 2011, 04:00:15 pm »
Hi, Susan!

As the lovely Phyl said, there are many doctors around Boston with significant AN experience. An AN is not, generally, an emergency situation so you have time to talk to different doctors, discuss various treatment options (including not treating immediately), and figure out what you want to do given your particular situation.

Honestly, I wouldn't call Dr. Barker directly. He's a neurosurgeon and will want to cut it out, and isn't that great at the interpresonal stuff (though an amazing surgeon). My experience was that McKenna was great at weighing all types of treatment options and helping you come to your own decision, which isn't always surgery. McKenna is making appointments for Oct if you call the office. And given what you've told us, I'd be very surprised if waiting until Oct would pose a medical issue. ANs are usually incredibly slow to grow.

There are also great doctors at Beth Israel, Tufts Medical Center, and probably elsewhere in Boston with great AN outcomes. I'm sure if you ask others will be happy to give recommendations to give you choices. Don't be afraid to make appts with several doctors and see what you think after talking to all of them. The treatment of ANs has a lot of variability and choices based on individual circumstances.

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

Susan A

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Re: Newly diagnosed in MA
« Reply #10 on: August 23, 2011, 08:34:36 am »
Thanks Katie! I had called Dr Barker's office directly before the weekend and the woman who answered said I needed to fax them a copy of the MRI report before they would even make the appointment. I didn't have it at that point, and I don't have easy access to a fax machine. I called Dr McKenna's office this morning and they went right ahead and made an appointment for me on September 26th and told me just to bring the CD and hearing test report with me on the day. (They said McKenna was originally due to return to work in October, but he's coming back in September.)

My ENT went ahead and made an appointment for me with Dr Mason in Springfield on Sep 20th, so I will be getting more than one opinion  :)

I also have an appointment with a local neurologist regarding the meningioma. I still have to schedule my mammogram and colonoscopy  . . . Thanks goodness for good health insurance and a job that has a decent allowance of 'sick' days!

Of course I wanted to look at the images on the CD, but it said PC only and I have a Mac. I found free software that works beautifully on the Mac - it's called OsiriX and works on Macs running 10.6 or newer (including Lion.)
2011 8 x 7 mm AN, & 20 x 22 mm M found, both on the left. Mosaic NF2 diagnosed. Some hearing loss
2014 hearing 30% on left, now using hearing aid (HA)
2015 Now have CROS HA - no longer hear enough for HA to be useful in AN ear
2016 Use an FM system on occasion at work to supplement HA

Crazycat

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Re: Newly diagnosed in MA
« Reply #11 on: August 23, 2011, 02:17:30 pm »
Yes,


  Dr. McKenna is coming back Sept. 14. I made appointment to see him for the 21st. They offered me the 14th, the same day of his return, but I thought it would be too soon. Looking forward to seeing him again.

PS...666 posts. Check it out! :o
« Last Edit: August 23, 2011, 02:20:25 pm by Crazycat »
5cm x 5cm left-side A.N. partially removed via Middle Fossa 9/21/2005 @ Mass General. 
Compounded by hydrocephalus. Shunt installed 8/10/2005.
Dr. Fred Barker - Neurosurgeon and Dr. Michael McKenna - Neurotologist.

Rivergirl

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Re: Newly diagnosed in MA
« Reply #12 on: August 25, 2011, 06:28:52 pm »
Dr McKenna is wonderful and so are the surgeon's at Mass General, I had Dr. Martusa and he had a great bedside manner so my experience was very good.  I would suggest seeing the Drs in Boston as they do these all the time and it is a specialized surgery as you will read in this forum go to someone with lots of experience.  Boston is a medical mecca, we are lucky to live so close.  There is also Hotels close by that offer discounts if you are coming into town to see the Dr. or having surgery.  Sorry you have joined our elite club but we are a wealth of information and when one of us seeks treatment we are very informed and that is a good feeling.
Diagnosed 6/2008
Right AN 2cmx8x9
Sub-Occipital at Mass General with Martusa and McKenna on 5/31/11
Right SSD, very little taste
I think I will make it!

Lynn Mc

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Re: Newly diagnosed in MA
« Reply #13 on: August 31, 2011, 05:29:30 am »
Hi  Susan,
Have not been on in a while.  Glad you were able to get an appointment with Dr. McKenna.  Really glad to hear he is coming back so soon!!!  He is a wonderful Doctor. 
You live relatively close to me.  I am in the Berkshires.  The travel to Boston is a pain but WELL worth it.  Lisa P is also near you, just outside Springfield.  She runs the support group in our area.
Good Luck on your journey....
Translab 01/22/10.  12 x 11.7 x 8.2 mm.
Dr's McKenna/McCall at Mass Eye & Ear,
Dr. Barker at MGH. 
SSD - No other significant problems post surgery, just some minor inconveniences!  Yipee!!
BAHA implant 04/08/11 Dr. Merchant
BAHA Gotcha 07/25/11
"Life is Good"

Helga

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Re: Newly diagnosed in MA
« Reply #14 on: September 07, 2011, 10:23:21 am »
Hi Susan, as a fellow Pioneer Valley-ite I welcome you! Haven't been on the site in ages, but my two year MRI is coming up next week and I guess I am feeling nostalgic. I had seen Dr. Mason at first, he made the diagnosis, and although I liked him and am sure he is a very fine doctor, I opted for one with more AN experience (Dr. Mason told me he had done 8 AN surgeries when I saw him January 2009, may have done more now). If you are leaning towards surgery, another appointment option I recommend is Dr. Carl Heilman at Tuft's. I found it very helpful to interview a few docs before I made my final decision.
Good luck with everything, there will be such a wonderful feeling of relieve once you make a final decision!
Helga