Author Topic: Newly diagnosed in MA  (Read 12992 times)

Susan A

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Re: Newly diagnosed in MA
« Reply #15 on: September 07, 2011, 08:27:08 pm »
Thanks Helga for giving me another name to check out :) I'm so glad I found this board!
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

ppearl214

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Re: Newly diagnosed in MA
« Reply #16 on: September 08, 2011, 04:19:24 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
Helga, GREAT to hear from you! Been a long time! 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: Newly diagnosed in MA
« Reply #17 on: September 08, 2011, 12:52:21 pm »
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 ;)

Jim Scott

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Re: Newly diagnosed in MA
« Reply #18 on: September 08, 2011, 01:39:59 pm »
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     
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

leapyrtwins

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Re: Newly diagnosed in MA
« Reply #19 on: September 10, 2011, 07:04:35 am »
Helga -

I'm with Jim.  Never feel guilty about a great outcome.

Jan
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

Helga

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Re: Newly diagnosed in MA
« Reply #20 on: September 12, 2011, 07:13:55 am »
Thanks Jim and Jan, as always, your glasses are half full!
Helga

Susan A

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Re: Newly diagnosed in MA
« Reply #21 on: September 20, 2011, 06:34:59 pm »
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.
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

Susan A

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Re: Newly diagnosed in MA
« Reply #22 on: September 23, 2011, 06:58:36 pm »
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. 
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

Susan A

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Re: Newly diagnosed in MA
« Reply #23 on: October 01, 2011, 06:38:53 am »
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.
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

 


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