Author Topic: *Update* Surgery Scheduled Sept 6th  (Read 34547 times)

Windsong

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Re: *Update* Surgery Scheduled Sept 6th
« Reply #60 on: August 29, 2007, 10:20:47 am »
What surprised me in this  thread is that there even were comments questioning the veracity of the statement regarding two weeks. I didn't doubt or question that bit at all when i watched the video. For one I trusted that a doctor had said that. Where else could a comment like that come from, really?  For another I didn't even find it dramatic as I know that depending on the location, the displacement, the effect on the brainstem, above all the symptoms too, can all lead to a prognosis which can be shocking. I viewed the video as demonstrating many many things. From no diagnosis to getting one at a time when symptoms were escalating greatly. The focus as I saw this video was that from this  beginnng Renee  had the right treatment for her, came out with side effects, but then worked on healing and getting better.

I didn't expect a treatise on Ans at all as I saw this video more as an inspirational offering on how one person could overcome what had to be an astonishing and shocking thing personally. Let's not forget that ten years went by before this point. This wasn't meant to be a full length movie I figured but a clip that showed how one person overcame a serious situation and showed a beautiful person with bucketsful of spirit and good will.

It's  a "real' thing that some Ans ( and let's remember that all Ans are different) behave in ways that can't help but be dramatic.

Although the details are different, and if anyone is strong enough, you can go to Val's site. www.racoonhouse.com . If you click on the entry of Oct 13, 2004 you can read the symptoms that Val had  only two weeks before she passed away on Oct. 20 not two weeks later.  Yes this is dramatic.

The thing about Ans is that for the most part no one dies of course. But in certain situations when one looks at the total picture in some individuals the risks rachet up considerably. That's a reality.

Is this scary for some?  Sure it is. That's a  reality too. Is there enough out on the net to reassure most of us? Most assuredly there is.

Is an An benign? Oh yes (except for the small percentage of some which aren't). Are the effects of hearing that one has an An benign? Oh, well no. And are the side effects both pre-treatment and post-treatment benign? Well for some they are;  for others they are not.

The beauty is that most of us prevail, most of us get better, and some get better not only physically but also in many other areas of their being.

It's  fact that some things in life are scary. It's also true that one can overcome any fear.

Getting back to the two week statement. I have to trust that that was Renee's reality. The marvellous thing is she overcame it and has a new one which is most positive. And that is what the video presented.

All the best everyone and good healing too,
Windsong



ppearl214

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Re: *Update* Surgery Scheduled Sept 6th
« Reply #61 on: August 29, 2007, 11:17:04 am »
Renee, the good point is... regardless if 2 wks or more or less... you are here and here to share with us your AN journey. I'll take that as a good thing :)

Again, welcome.

Phyl



(FYI all....as important as it is to welcome Renee and what she has endured, this thread was originally noted regarding Sam/Adrian's journey.  Just a thought.. should we start a new thread for Renee to discuss her journey/video and get this one back on track re: Sam/Adrian?  Anyone want to start it, please do.... Sometimes, mixed threads occur and both are important topics of conversation (IMO).  thanks. Phyl)
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

Samantha n Adrian

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Re: *Update* Surgery Scheduled Sept 6th
« Reply #62 on: August 29, 2007, 11:48:57 am »
Hello everyone….Adrian here.  Wow….what a roller coaster ride again today.  I had to go to the medical center this morning and I spoke with my friend.  They were waiting on the report from the doctor I saw on Monday.  He was getting very frustrated because this entire case should have been approved by now and he didn’t have much control.  He truly is stuck in the middle.

I received a call at about 10:30am from my case manager.  She had spoken to TGH (Tampa General) and they said 70% of the cash price must be paid upfront.  I told the case manager that when I asked Dr. Bartels about that, he didn’t say anything, but wrote the very strong letter that I posted on Friday.  She said she would call TGH back and express that Dr. Bartels did not tell me anything regarding pre-payment.  She then called me back in less than a minute that my friend received a “very goodâ€? email and would share the particulars when he sorted through the information.

At about 12:30, I received a call from my friend who then conference called my case manager and both told me ……….MY CASE WAS APPROVED!!!  He read me an email from the insurance company authorizing the surgery.  With all of the emotions, especially of the past couple weeks, I broke down.  I couldn’t believe it….he said…..100% APPROVED!  So….that is a huge weight off my shoulders…..HUGE!  I can’t even call my parents right now as they are on an airplane from Europe.  They arrive here in Orlando at 10:50pm.  At least I’ll have some amazing news to share with them!


Renee….I’m very glad you wrote on my post.  Welcome to this amazing forum.  It has been an amazing source of support, comfort, and education for Sam and I.  She found your video and showed it to me.  It made me a little depressed that I may very well have some of the same post-op symptoms regarding facial paralysis.  Hearing what you were going through before surgery gives me hope.  I don’t have anywhere near your issues.  It also makes me very sad to hear what you were going through and also very impressed how far you’ve recovered through lots of will and hard work…..I commend you!  You are correct….no two AN’s are alike.  Videos on YouTube can be very skeptical….too much sensationalized BS on there.  Don’t be offended by the comments from people on this forum.  Everyone is truly amazing and extremely caring.  I’m glad you came on a posted your side of the story and hope you stay and keep giving advice to others.  I cannot tell you how much Sam and I appreciate this forum.  I know Sam will be sending you a personal message when she reads your posts.

Thank you everyone…..I will keep updating as my surgery progresses.  Your support and encouragement has been amazing!  Talk to you soon.

Adrian
Age 35/ 4cm AN right side, Transpetrosal aproach, 9/6/07
Dr. Loren Bartels - Otolaryngology & partner Dr. Christopher Danner
Dr. Harry van Loveren - Neurosurgeon & partner Dr. Levine
Dr. David Samuels - Anesthesiologist
Tampa General Hopital, Tampa FL
These guys re-assembled Humpty Dumpty!

ppearl214

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Re: *Update* Surgery Scheduled Sept 6th
« Reply #63 on: August 29, 2007, 11:51:57 am »
Adrian and Sam...

congratulatory Huggles!!!!!!!!!!!!!!  YAY!!!!! Red tape is done!!!!!! Onward to new wellness for you! Congrats on the great news!  Hang tough!

Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

linnilue

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Re: *Update* Surgery Scheduled Sept 6th
« Reply #64 on: August 29, 2007, 12:27:09 pm »
Dear Adrian,  I just got home from picking up my 1 year old grandson, who makes me laugh all the time (thank God for him) and when I read your post I first got chills and I too cried out of joy for you, Sam and then for your parents.  Their joy with this news will be overwhelming for all of you.  Congratulations, job well done.  Now onto the most important part of this story and then to a life filled with joy and happiness and this will be your past.  We are all here to support all of you in your recovery.  Bless you all, Holly 
Left AN dx. 11/05 Linac radiosurgery 01/06 Burlington, VT for a 9mm x 5mm tumor.  No necrosis yet (2 yrs. post-op).  Multiple post radiosurgery complications, some permanent.  Have radio-oncologist here.  Now see Dr. McKenna, Mass. Eye & Ear Instit., Boston for flollow-up care as my main An doctor.

Sue

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Re: *Update* Surgery Scheduled Sept 6th
« Reply #65 on: August 29, 2007, 12:31:54 pm »
Well, it's about time you guys had some good news!  Congrats to you and your advocates for beating the system and fighting the good fight.  Hopefully all you will have to worry about now is getting well.  That should be the easy part after all you've been through.  It's a crazy world, huh? 

Thinking of you in Vancouver USA 

Sue
Sue in Vancouver, USA
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Diagnosed 3/13/06 GK 4-18-06
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Windsong

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Re: *Update* Surgery Scheduled Sept 6th
« Reply #66 on: August 29, 2007, 12:39:25 pm »
 :)

What fabulous news you now have! ! ! I am so happy for you Adrian.  :)

This is the happiest of best  news to hear!

Your reunion with your parents now has a shining light on it and you can all have a more relaxed time now and feel good.

Warm wishes to you and Sam and your parents.

W.

Jim Scott

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Re: *Update* Surgery Scheduled Sept 6th
« Reply #67 on: August 29, 2007, 02:23:47 pm »
Adrian/Sam:

CONGRATULATIONS!  This is splendid news, of course, and makes things much easier for you both, I know.

I'll simply remind Adrian that we care about him and want only the best for him.  Sam knows we all admire her and are confident that she'll help Adrian get through this no matter what may happen, post-op.  Remember, some AN patients do just fine.  I'm one of them - and I sincerely hope Adrian will be another. 


The YouTube AN video issue has been throughly addressed and was effectively moved to a new thread for those who wish to comment further.  This thread 'belongs' to Adrian and Sam, especially now, with the fabulous news that Adrian has been approved for his surgery, where he wants it by the doctors he prefers.  I hope we can keep it that way. 

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.

Samantha n Adrian

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Re: *Update* Surgery Scheduled Sept 6th
« Reply #68 on: August 29, 2007, 03:32:05 pm »
YES!!!!  We are so happy and thrilled and overjoyed and ecstatic and relieved and many other emotions jumbled into one now that surgery has been approved. Like Adrian said HUGE load off of our shoulders now!  ;D

I just wanted to say it again THANK YOU! All of your love and support as well as prayers and loving thoughts have pulled us through and now we have proof that good can prevail and that will and determination payoff in the end.

The same will go for our surgery I have no doubt! It is truly amazing how thankful we now feel, like the surgery is just the side part of this all, and I think that is largely due to the fact that we both feel so comfortable with our team of doctors! :) That along with the fact that our blood, sweat, & tears (as well as our AN family) has pulled us through this so far we now feel like together we can overcome it all.

So again, thank you, THANK YOU.... truly deeply thank you. Even though we unfortunately may not respond to every single post or personal message, we DO read them and appreciate them and have immense love and respect for all of you. :)

We will still keep you posted on surgery day and post op successes!!  ;)

xox
Sam~
Age 35/ 4cm AN right side, Transpetrosal aproach, 9/6/07
Dr. Loren Bartels - Otolaryngology & partner Dr. Christopher Danner
Dr. Harry van Loveren - Neurosurgeon & partner Dr. Levine
Dr. David Samuels - Anesthesiologist
Tampa General Hopital, Tampa FL
These guys re-assembled Humpty Dumpty!

ppearl214

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Re: *Update* Surgery Scheduled Sept 6th
« Reply #69 on: August 29, 2007, 06:26:41 pm »
so folks... would you agree that Sam and Adrian are bouncing off the walls in joy just a wee bit?  Yep... I think so! ;) and rightfully so! :)  Looks like the walls can take it!

Sam/Adrian, now that one big monkey is off your back, lets get you all on the fast track to being a "postie" (post-treatment). Looking forward to seeing you on this "side" of your AN journey.

Again, congrats! :)

Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

sgerrard

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Re: *Update* Surgery Scheduled Sept 6th
« Reply #70 on: August 29, 2007, 08:45:00 pm »
Wow, what a great about face on the insurance question! It is wonderful that you are sharing such good news with us, we all get to enjoy it along with you.  8)

100% Approved. It sure has a nice ring to it, I must say. Congratulations, take a well deserved rest, you have done great.

All the best, Steve
8 mm left AN June 2007,  CK at Stanford Sept 2007.
Hearing lasted a while, but left side is deaf now.
Right side is weak too. Life is quiet.

Jeanlea

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Re: *Update* Surgery Scheduled Sept 6th
« Reply #71 on: August 29, 2007, 09:00:37 pm »
I have been reading your posts.  What a ride you've had!  I am so happy for you that your surgery will be 100% covered.  Now you can focus on your upcoming surgery and recovery.  We will share a surgery date.  The day of your surgery will be the two year anniversary of my surgery.  I will be sending you all my best wishes on your surgery day.

Jean
translab on 3.5+ cm tumor
September 6, 2005
Drs. Friedland and Meyer
Milwaukee, WI
left-side facial paralysis and numbness
TransEar for SSD

leapyrtwins

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Re: *Update* Surgery Scheduled Sept 6th
« Reply #72 on: August 29, 2007, 09:22:39 pm »
Adrian -

Congratulations!  100% coverage - what a victory - and a sweet ending to a big battle!  I'm so glad to see that your, and Sam's, hard work has paid off.  Take the next few days to relax before your procedure.  Like everyone else, I'll be anxiously awaiting news from Sam - and eventually you - on how your surgery goes.   

All the best,

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

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cookiesecond

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Re: *Update* Surgery Scheduled Sept 6th
« Reply #73 on: August 29, 2007, 10:56:14 pm »
Adrian and Sam,
Thank you so much for sharing this wonderful news. God is faithful to answer our prayers!!!!I am glad this hurdle is behind you and will join the others as we lift you in prayer for a successful surgery and great recovery.
Love and prayers,
Lynn

mema

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Re: *Update* Surgery Scheduled Sept 6th
« Reply #74 on: August 30, 2007, 10:59:13 am »
Adrian and Sam,                                                                                                                                                                     

So glad that the insurance issue is in the past.  My prayers will we with you on Sept 6th.  My hubbys yearly visit to his surgeon at Tampa General is Sept. 11th.  If your still there and up to it would you mind a visit from a fellow AN'er.                                             


                                                          mema
6mm x 8mm left AN FSR 26 treatments Nov.-Dec.2005
MD Anderson Orlando, Fl.