Author Topic: Wondering if epc1970 is still around  (Read 3329 times)

mandy721

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Wondering if epc1970 is still around
« on: August 16, 2010, 06:06:15 pm »
Hi,
I was just thinking about Erin and wonder if she still frequents the boards.  I haven't been here much myself lately and very much want to get reconnected.
Miranda
Husband diagnosed 5/30/09 with 3.2cm right AN
Surgery at  Columbia Presbyterian 8/4/09
Platinum eye weight implant - 8/17/09
17 days in hospital and rehab
SSD, facial weakness, some tinnitus, headaches , balance and eye problems

leapyrtwins

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Re: Wondering if epc1970 is still around
« Reply #1 on: August 16, 2010, 08:49:10 pm »
Am not familiar with this user name.

Did you try to PM her?

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

mandy721

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Re: Wondering if epc1970 is still around
« Reply #2 on: August 16, 2010, 09:30:00 pm »
Jan,

She is now listed as a guest and there are no links for sending a pm or email. 

Miranda
Husband diagnosed 5/30/09 with 3.2cm right AN
Surgery at  Columbia Presbyterian 8/4/09
Platinum eye weight implant - 8/17/09
17 days in hospital and rehab
SSD, facial weakness, some tinnitus, headaches , balance and eye problems

mandy721

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Re: Wondering if epc1970 is still around
« Reply #3 on: August 17, 2010, 07:53:38 am »
I am happy :) to report that I connected with Erin.
Husband diagnosed 5/30/09 with 3.2cm right AN
Surgery at  Columbia Presbyterian 8/4/09
Platinum eye weight implant - 8/17/09
17 days in hospital and rehab
SSD, facial weakness, some tinnitus, headaches , balance and eye problems

Jim Scott

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Re: Wondering if epc1970 is still around
« Reply #4 on: August 17, 2010, 12:19:59 pm »
Mandy ~

I haven't connected with Erin since the AN brunch in Worcester, Massachusetts last October.  However, my wife, Tina, took Erin's e-mail address and they corresponded occasionally over the last year.  I believe Tina and Erin talked by telephone a few months ago.  Of course, Tina passed along Erin's news and gave her my regards.  As I recall, Erin was doing O.K. with no major issues at the time.  Like most of us, time has softened the edges of Erin's AN issues a bit and she is moving on in her life. Frankly, I'm always glad to see that happen, even if it means we 'lose' some regular posters.  Although I wish that no one was ever diagnosed with an acoustic neuroma, the reality is that there are always 'newbies' coming into the ANA discussion forums and as with all of life, things are always changing.  Still, I'm pleased to learn that you were able to connect with Erin and I assume she's doing well.

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: Wondering if epc1970 is still around
« Reply #5 on: August 17, 2010, 01:09:41 pm »
Mandy -

glad you were able to connect with Erin  ;D

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

Lizard

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Re: Wondering if epc1970 is still around
« Reply #6 on: August 18, 2010, 10:39:24 am »
Great, I hope Erin is doing well, I sat with her at the AN brunch in Worcester (as well as her Mom, Jim and his wife), have talked to her a couple times, but not for quite a while.  I hope her DEFCON 5 headaches have eased up a bit.
Liz
Left AN 2.5CM,retrosigmoid 11/2008, second surgery to repair CSF leak. 
Headaches began immediately.  Dr. Ducic occipital nerve resection, December 2011!!!!!

"When you come to the end of your rope, tie a knot and hang on"
-Franklin D. Roosevelt

epc1970

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Re: Wondering if epc1970 is still around
« Reply #7 on: August 19, 2010, 06:49:56 am »
Hi! I just want to report that yes...I am still around. I somehow managed to delete my user information (I am NOT computer savvy) As you can tell I have set up a new one.....I will get everything updated when I have a chance. It has been a very busy summer here in Maine and I am happy to report that I have connected with Miranda and we are going to meet up later today to chat in person. I'm looking forward to seeing her. Liz, I think (fingers crossed) that I have a solution to the lovely DEFCON 5 headaches. My headaches are more "mechanical" in nature  vs nerve related  in that nerve blocks and meds like Neurontin don't really help. I am going to see a Neuromusculoskelatal (big word!) specialist whose primary practice is treating post crainotomy patients for head and facial pain. My appt is not until the fall but I am hoping that this is the fix I have been searching for!

Erin


epc1970

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Re: Wondering if epc1970 is still around
« Reply #8 on: August 19, 2010, 07:47:34 am »
Oh....I meant to say that Jim (and dear Tina as well)  and Liz, I hope I will be seeing you guys at the next brunch!

Erin

Lizard

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Re: Wondering if epc1970 is still around
« Reply #9 on: August 19, 2010, 09:33:14 am »
Erin,
Great to hear from you and I wish you luck at the Neuromusculoskeletal Doc (yes big word indeed).  You have to let me know how this turns out!  I know we're planning on attending the next brunch, and it will be good to catch up.
Liz
Left AN 2.5CM,retrosigmoid 11/2008, second surgery to repair CSF leak. 
Headaches began immediately.  Dr. Ducic occipital nerve resection, December 2011!!!!!

"When you come to the end of your rope, tie a knot and hang on"
-Franklin D. Roosevelt

Jim Scott

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Re: Wondering if epc1970 is still around
« Reply #10 on: August 19, 2010, 01:11:14 pm »
Hi, Erin ~

Tina told me about your new approach to relieving your 'DEFCON 5 headaches (osteopath?) and of course, I hope and will pray that this route is successful  for you. 

We're look forward to seeing you again, in October, at the ANA brunch.

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.