ANA Discussion Forum
Pre-Treatment Options => Pre-Treatment Options => Topic started by: Susan A on August 18, 2011, 07:49:39 am
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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!
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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.
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Thanks Lynn - hmm, maybe that's why the 'Make an appointment' link on Dr McKenna's page is not working!
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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?
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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.
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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
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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!
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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.
;)
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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
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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
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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.)
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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
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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.
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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....
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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
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Thanks Helga for giving me another name to check out :) I'm so glad I found this board!
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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
Helga, GREAT to hear from you! Been a long time! Phyl
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I know, what a slacker! I guess I needed some distance, maybe I even felt a little guilty because my recovery went so well (besides that pesky SSD, oh well) while others had such a difficult time. But maybe I can help someone just a little, the way way you all helped me .
See you around, Helga ;)
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I guess I needed some distance, maybe I even felt a little guilty because my recovery went so well (besides that pesky SSD, oh well) while others had such a difficult time. But maybe I can help someone just a little, the way way you all helped me .
Helga ~
Never feel guilty about having a positive AN surgery experience. I try to use my positive experience as an encouragement to newly diagnosed AN patients that are often frightened and think the acoustic neuroma diagnosis (and surgery) is the end of the world. Yes, some AN patients have complications and struggle with problems but they usually surmount them, one way or another. I don't envy those folks but I deeply admire their courage in the face of adversity. These are some of the reasons many of us (not just the moderators) stick around. It's mainly to help others with information, advice, understanding and support. I hope you'll regularly join us as we continue to serve our members in the best way we know how.
Jim
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Helga -
I'm with Jim. Never feel guilty about a great outcome.
Jan
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Thanks Jim and Jan, as always, your glasses are half full!
Helga
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I saw Dr Mason today. I liked him a lot - and one of the things I liked best was that he was very upfront that I may possibly have NF2. He wanted a spinal MRI done (to look for other meningiomas) and wants to refer me to the NF2 clinic at MGH as they have the experience with NF2 and he doesn't. (He said he's referred one patient every 3 or 4 years for NF2!) He said if it were not for the suspicion that I may have NF2, he'd have me wait and watch, with another brain MRI in 6 months. He didn't particularly like the MRI that I had done at my local hospital though - said the slices weren't as thin as he would have liked!
He also said that he thinks I could benefit from a hearing aid, so I'm going to have an evaluation for that in October. My HMO won't cover even $0.01 of the cost of a hearing aid though :(
My appointment with Dr McKenna is next week - it'll be interesting to hear what he says! He's listed as being "closely affiliated" with the NF2 clinic so that means I don't have to make yet another appointment :)
So far, I've been very happy with the doctors I've seen in relation to this. They've all taken me seriously, they've all been good about admitting the limits of their knowledge.
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Aarggh - my appt with McKenna was changed from 1:30 p.m. next Monday to 9:30 a.m. because he's going to be in surgery. I made the changes in childcare arrangements I needed - and got home from work today to find a message on my machine saying the appointment is now canceled because he will be in surgery in the morning. I'm hoping it doesn't take another 6 weeks to get an appointment with him!
OTOH, Dr Mason ordered spinal MRIs for me (to help rule out NF2) and there was also a message from his office saying those have already been scheduled - for this weekend.
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And then my rescheduled appointment with McKenna was canceled >:( Helen asked if I was really set on seeing him . . . So now I have an appointment with Dr De Venecia instead.
The good news this week was that my spinal MRIs came back clear, so hopefully no NF2.