Author Topic: This Week 5/16/10 in the AN World  (Read 3918 times)

Rich56

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This Week 5/16/10 in the AN World
« on: May 16, 2010, 03:32:40 pm »
Here is an encouraging update from Rita (chrissmom) regarding her son Chris (Dfcman).  In 2006 Chris had surgery to remove a 5.3 x 5.0 cm AN.  His last MRI showed no growth.  Chris has since, graduated from college with a Bachelor of Science Degree in Business Administration and Marketing with a perfect 4.0 grade point average.  Congratulations Chris!  Thanks for showing us that even with an AN, great things can be accomplished.  Good luck to you for a bright future.  Thank you and congratulations Rita for updating us.

On Wednesday 5/5/10 (a.m.) had translab, and went home that Saturday.  We’re glad everything went well, and we wish you a speedy recovery.

Last week:

Jacqui (kiwi) had a successful 4 hour surgery to stop a CSF leak.  Jacqui we’re glad you can finally put this all behind you, and just concentrate on rest and recovery.

Jan (leapyrtwins) we’re happy that your 5/12 experience in the T.O.G. went well.  We’re glad you were able to relax enough to open your eyes during the process for the first time.  Going by what I’ve read, I gather it can be unnerving.  Please keep us posted when you get the results.

Scarlett’s (SML) 1 year follow-up appointment with Dr. Barker went great.  He said that everything looked good, that there were no signs of any growth, and I’ll see you next year.  This is fantastic news.  Onward and upward :-*

Congratulations on a successful surgeries, being a big girl in the T.O.G., and unremarkable MRI results!

Nikki (opp2) we are sorry that after reviewing the 5/12 MRI results yourself, that you believe there may be some growth.  You’ve said that you are “tired of waiting”.  Though we’d rather say that we hope the Dr. says you are wrong, it is certainly understandable that you are sick of being in limbo.  Wherever the news takes you, your Forumites are here for you.

This is a big week:

Tuesday 5/18 Tracy (Tracy Lynn) is having translab surgery.
Nancy (nanramone) will be having GK treatment.
Phyl (ppearl214) goes for a 4 year CK follow-up.
Francisco (Frank951) is having retrosigmoid surgery.

Wednesday 5/19 Kim (knakag01) will have translab surgery.

Thursday 5/20 Sue (sues1953) will also be having translab surgery.

Tracy, Nancy, Francisco, Kim, and Sue you will all be in our thoughts and prayers this week for successful and uncomplicated surgeries, and treatment.  As you’ve read in the update on Chris (Dfcman) above, life does go on after surgery.  We’ll be looking for your updates.

Phyl (ppearl214) we hope you have a great follow-up at Beth Israel, and that they have fantastic news for you.  Please keep us posted.  By the way, your new forum photo with Ian looks terrific :o :o

To those on the recovery road, keep up the good fight.  The rocky road will soon have a nice smooth top coat 8)

Have a great week everyone,

Rich & Scarlett
« Last Edit: May 16, 2010, 03:36:21 pm by Rich56 »
SML (Scarlett's) other half, she had - 1.5 cm x 2.5 cm Cystic AN - Right side
Retrosigmoid on 3/18/09 at MGH in Boston, MA. Dr. Barker & Dr. Lee of MGH/MEEI
no facial issues, SSD right side, balance issues to work on.
The AN Calendar is here: http://www.my.calendars.net/AN_Treatments

CHD63

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Re: This Week 5/16/10 in the AN World
« Reply #1 on: May 16, 2010, 03:45:57 pm »
Whew!  This will be a busy prayer week ..... many surgeries and follow-ups.

As usual, thanks Rich for the great job of summarizing all of these very important events for us.

Thoughts and prayers for all.

Clarice
Right MVD for trigeminal neuralgia, 1994, Pittsburgh, PA
Left retrosigmoid 2.6 cm AN removal, February, 2008, Duke U
Tumor regrew to 1.3 cm in February, 2011
Translab AN removal, May, 2011 at HEI, Friedman & Schwartz
Oticon Ponto Pro abutment implant at same time; processor added August, 2011

opp2

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Re: This Week 5/16/10 in the AN World
« Reply #2 on: May 16, 2010, 07:20:34 pm »
Thank you Rich. I received a call from my family doctor on Saturday, wanting me to come and see the doctor for follow up. First time since the first MRI (so no call from the doc for MRI 2 and 3) I'll stop in and see her, I have sent the disc to BC for Dr Akagami to review, but it appears to be stuck in cyberspace. I keep trying to track it but it shows still sitting at the post office in Vaughan where I posted it from on Thursday. I called there today and the staff member I spoke to hung up on my when I asked her if she could just go and look to see if it happened to get missed. (I'll follow up with her supervisor, pretty frustrating).

Anyway, I'm not as distressed as it may seem, more resigned to waiting until July for surgery. I'm sure I can hold out, but it is mentally draining.

Thankfully I have my family and we are having fun in the warm weather and in the pool. It's not all gloom and doom.
Diagn Apr 14 2009 with 2.5 cm lt AN. - numbness in the face and sudden onset headaches accompanied by balance issues. Consults with Drs in S Ontario, California (House) and Vancouver. Picked Dr. Akagami in BC.
Retrosigmoid July 6, 2010, 3.0cm by then. SSD left, no other significant side effects.

leapyrtwins

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Re: This Week 5/16/10 in the AN World
« Reply #3 on: May 17, 2010, 07:17:00 am »
Looks like another very busy week in the world of ANs.

Good luck to everyone having surgery, GK, and appts.

As for myself, haven't heard from the doc yet - which is just adding to my confidence.  I figure no news is good news and that he has much more important things to do than to call me about a clean MRI.  Either that or he's on vacation  :D  Sure hope it's the former and not the latter.

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

Debbi

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Re: This Week 5/16/10 in the AN World
« Reply #4 on: May 17, 2010, 08:40:04 am »
Wow - did someone declare this National Acoustic Neuroma Treatment week?  Very busy week.

Good wishes and lots of prayers to everyone this week.  Looking forward to updates...

Debbi
Debbi - diagnosed March 4, 2008 
2.4 cm Right Side AN
Translab April 30, 2008 at NYU with Drs. Golfinos and Roland
SSD Right ear, Mild synkinesis and facial nerve damage
BAHA "installed" Feb 2011 by Dr. Cosetti @ NYU

http://debsanadventure.blogspot.com

Lizard

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Re: This Week 5/16/10 in the AN World
« Reply #5 on: May 17, 2010, 10:40:44 am »
Busy week, thanks again for keeping us updated  ;D
Good luck to all!
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

Denise S

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Re: This Week 5/16/10 in the AN World
« Reply #6 on: May 18, 2010, 08:50:09 pm »
Wow - did someone declare this National Acoustic Neuroma Treatment week?  Very busy week.

Good wishes and lots of prayers to everyone this week.  Looking forward to updates...

Debbi

Ya know Deb it is supposed to be Brain Tumor awareness month, so maybe there is something with that   :D

Glad I checked your posts most weeks because I noticed not much of these were one the calendar I usually go to......THANKS for the 'weekly' posting.

Best wishes to you all!!!!! 
        Denise (in Michigan)
       
W&W 2 yrs. (due to watching other brain tumor: it's stable)
Left AN:  1.2 cm (kept growing during 2 yr.)MIDDLE FOSSA  11/9/09;  Michigan Ear Institute Dr. Zappia & Pieper
SSD, mild tinnitus, delayed onset of facial paralysis lasting 3-4 weeks, no tears AN side
BAHA surgery 10/2/12 Dr Daniels G.R.,MI

leapyrtwins

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Re: This Week 5/16/10 in the AN World
« Reply #7 on: May 19, 2010, 05:38:19 am »
May is also better hearing and speech month.
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

moe

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Re: This Week 5/16/10 in the AN World
« Reply #8 on: May 20, 2010, 10:56:37 am »
May is also better hearing and speech month.

Hah go figure. Not with AN surgery, it's not!
Lots of translabs this week, I'm partial to that!
I posted pre/post pics from my surgery last week, if anyone is interested. Started a new thread.
I'm now officially chipmunk cheek Moe!

Thanks Rich for the updates. Oh and my bday is 22 May so that is important too, though I didn't put it on the calendar!
Maureen
06/06-Translab 3x2.5 vascular L AN- MAMC,Tacoma WA
Facial nerve cut,reanastomosed.Tarsorrhaphy
11/06. Gold weight,tarsorrhaphy reversed
01/08- nerve transposition-(12/7) UW Hospital, Seattle
5/13/10 Gracilis flap surgery UW for smile restoration :)
11/10/10 BAHA 2/23/11 brow lift/canthoplasty

iluuvpups

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Re: This Week 5/16/10 in the AN World
« Reply #9 on: May 20, 2010, 03:07:56 pm »
Hi.  I'm posting for SueS.  She had her translab today.  All is well!  No facial paralysis.  She's already smiling!!
Original 1.75cm left-side AN diagnosed Feb 2010
Translab surgery May 27, 2010 with Drs. Kartush and Pieper of MEI
SSD on left side, some facial weakness, tear duct doesn't work
Found I actually had a facial neuroma during translab
Remaining 6mm facial neuroma - watch and wait

Rich56

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Re: This Week 5/16/10 in the AN World
« Reply #10 on: May 20, 2010, 05:32:27 pm »
Hi everyone, and thank you for the kind words.

Nikki, It really can make you mad the way some offices operate, or should I say DON’T operate.  Enjoying the weather and hanging out by the pool sounds pretty good.
 
Jan, I agree with the “no news is good news” concept.  Usually they get in touch with you pretty quick if something is going on.  We’ll be wait’n :)

Maureen, Happy Birthday to you on Saturday hope you have a great day, and to your son back on the 18th.  We went to your other thread, and you look good.  Hope you feel better every day.

Thanks Carol Ann (iluuvpups) for Sue’s update.  Great news.

Rich
SML (Scarlett's) other half, she had - 1.5 cm x 2.5 cm Cystic AN - Right side
Retrosigmoid on 3/18/09 at MGH in Boston, MA. Dr. Barker & Dr. Lee of MGH/MEEI
no facial issues, SSD right side, balance issues to work on.
The AN Calendar is here: http://www.my.calendars.net/AN_Treatments

moe

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Re: This Week 5/16/10 in the AN World
« Reply #11 on: May 20, 2010, 07:11:12 pm »
Yea, Sue S is out of surgery and smiling.
What a relief!
Maureen
06/06-Translab 3x2.5 vascular L AN- MAMC,Tacoma WA
Facial nerve cut,reanastomosed.Tarsorrhaphy
11/06. Gold weight,tarsorrhaphy reversed
01/08- nerve transposition-(12/7) UW Hospital, Seattle
5/13/10 Gracilis flap surgery UW for smile restoration :)
11/10/10 BAHA 2/23/11 brow lift/canthoplasty