Author Topic: transitioning from W&W to surgery.....  (Read 3185 times)

alabamajane

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transitioning from W&W to surgery.....
« on: August 26, 2011, 08:50:32 am »
Well,, it is time... I had a consult Tues. with new Dr. and received more info on my situation than I have in 3 yrs of W&W with local Dr... amazing.. just shows more than one opinion is crucial! He showed me tumor on MRI and measured it,, coming up with 2.8CM and local Dr had said it was 1Cm .. what a difference.. but he did show how it can be measured differently by different people..  it extends into IAC but mostly located in CPA with compression on brain stem. .. my symptoms have greatly worsened in this past year so I knew it was time to move forward.... still VERY scary... this Dr opinion was parallel with Dr Slattery from HEI so I feel comfortable with conclusions.. for personal reasons,, I just don't feel able to travel to Cal. so will have it at UAB .....

I am waiting now for call with surgery date.. sometime in late Sept. he said..this wait is almost as bad as the w&w time wondering if I was doing the right thing waiting.. you just never know.. but symptoms were not so bad up until this last year.. it had grown on this last MRI from 2 cm to 2.8 so I guess that is why symptoms have worsened..

I know others on here have and are going through the same feelings, and it is comforting to be able to vent on here to people who know and have been there... a friend accompanied me to this appt. and I believe she was really enlightened to what this tumor can do,, and really opened her eyes when she viewed the MRI on the screen!
Sorry for the rambling,, just have to talk I guess.. will post when I find out surgery date,,, till then I must find something to occupy my mind,, headaches are almost intolerable.. just want to keep my head still.. taking naps most days as just exhausted...
thanks for info from this forum,, it is most helpful to hear others journeys.. we have a support group meeting tomorrow and hope to find comfort and answer questions tomorrow...
translab Oct 27, 2011
facial nerve graft Oct 31,2011, eyelid weight removed Oct 2013, eye closes well

BAHA surgery Oct. 2014, activated Dec. 26

Jim Scott

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Re: transitioning from W&W to surgery.....
« Reply #1 on: August 26, 2011, 01:40:24 pm »
Hi, Jane ~

I'm sorry to learn that your AN is growing and surgery is in your immediate future.  It can be scary (was for me) but as you know from these forums, hundreds, thousands, really, have gone through AN surgery and done quite well.  I'm one of those people.  There are risks but they are not huge and frankly, the risks are unavoidable.   That your symptoms (headaches) are negatively affecting your quality of life makes the upcoming surgery probably a bit less daunting for you because you'll likely get relief from the headaches, post-op.  I trust you'll receive some answers and support at the group meeting tomorrow (Saturday) and you know you're in our thoughts and prayers. 

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.

RichB57

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Re: transitioning from W&W to surgery.....
« Reply #2 on: August 26, 2011, 03:32:13 pm »
Hi Jane,

It's very scary while you're waiting.  I'm four months post op and still have a ways to go in my recovery and understand the need to vent.  People that haven't gone through something like this just don't seem to understand sometimes.  Hang in there.  I'll keep you in my prayers.

Rich
Diagnosed 12/1/2010, 12.3 mm x 15.2 mm x 15.2 mm, retrosigmoid removal by Drs. Barker & Lee at MGH on April 20, 2011. Lost blood supply to auditory nerve, so SSD. Facial paralysis.

alabamajane

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Re: transitioning from W&W to surgery.....
« Reply #3 on: August 27, 2011, 08:19:36 am »
thanks for your replies and good wishes.. a kind word is always welcome and comforting. Look forward to support group meeting today.. waiting is so hard..just not knowing the outcome..
translab Oct 27, 2011
facial nerve graft Oct 31,2011, eyelid weight removed Oct 2013, eye closes well

BAHA surgery Oct. 2014, activated Dec. 26

sarahinPA

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Re: transitioning from W&W to surgery.....
« Reply #4 on: August 27, 2011, 10:55:33 am »
Good Luck Jane,

I was in your shoes only a few short weeks ago. I am not 4 weeks post op and although I have some minor soreness around the incision and am learning to deal with the Single Sided Deafness, which for me hasnt been too difficult; I am feeling pretty great and I do feel that a Weight has been lifted from me, Knowing that my recovery is going well and that I am once again feeling myself is amazing!
I will be thinking about you and wish you the best of luck in everything!
2.3cm Diagnosed 12/19/08
Gamma Knife @ UPMC Pittsburgh 1/12/09
.2mm Regrowth 6/2011
Translab 7/29/11 @ UPMC
     temporary paralysis of throat-feeding tube 8 days; SSD; facial numbness; blood clot & pnemonia developed; 11 days hospital stay.

 


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