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Author Topic: Concern from a caregiver.................  (Read 28049 times)

sues1953

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Re: Concern from a caregiver.................
« Reply #15 on: February 01, 2010, 05:42:10 pm »
Wow what a great example of how much good this forum does.  Blessings go to all involved. 

Susan
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3.2 cm AN Right side diagnosed 12/4/09
Translab surgery May 2010 with Dr. Jack Kartush and Daniel Pieper at Michigan Ear Institute.
Successful surgery .5mm left on facial nerve.  Full facial movement. SSD, Tinnitis, tongue and lip numbness.  No headaches.  Back to living life.

Jackie

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Re: Concern from a caregiver.................
« Reply #16 on: February 01, 2010, 06:42:39 pm »
So very glad that you posted and we welcome you to our forum/family! Please visit us often and know that we all share concern for each other! Your daughters are wonderful caring girls and love you and have found the right place for you and any questions we may be able to help with. So don't be a stranger and please let us know your MRI results!!! blessings to you and family,

Jackie from Oregon
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9mm x 11mm Right Side AN mild Tinnitis, and 60% hearing loss
Diagnosed 02/04/2007
Nov.13th, diagnosed with 5mm Meningioma
9/24/08 diagnosed with Aneurysm
Wait and watch per ENT's advice and researching my options!!! What's next???

lori67

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Re: Concern from a caregiver.................
« Reply #17 on: February 01, 2010, 06:52:27 pm »
 Hi Mare and welcome!

It's good to hear from you.  You are definitely not alone!

You've obviously done a wonderful job raising your children.  They are truly concerned about you.  I'm glad to see you've decided to check out the forum for yourself.  There's lots of good information and lots of caring people.

I hope your MRI goes well.  Keep us posted!

Lori
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Right 3cm AN diagnosed 1/2007.  Translab resection 2/20/07 by Dr. David Kaylie and Dr. Karl Hampf at Baptist Hospital in Nashville.  R side deafness, facial nerve paralysis.  Tarsorraphy and tear duct cauterization 5/2007.  BAHA implant 11/8/07. 7-12 nerve jump 9/26/08.

moe

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Re: Concern from a caregiver.................
« Reply #18 on: February 01, 2010, 11:36:22 pm »
Hi Mare,
So happy to see you and your daughters working close together on this issue.
Know that we are here for you. It is just good to validate all those feelings and issues with people who understand.
Part of the AN "journey"
Keep us posted ok? :)
Maureen
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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

leapyrtwins

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Re: Concern from a caregiver.................
« Reply #19 on: February 01, 2010, 11:53:21 pm »
Mare -

I was going to say that you are definitely not alone, but Lori already beat me to it.  I guess great minds think alike  ;D

Glad you have an MRI scheduled and I'm hopeful it will be "clean".

Please keep us posted.

Best,

Jan
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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

mare4ever1

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Re: Concern from a caregiver.................
« Reply #20 on: February 02, 2010, 07:28:57 am »
thank you all for welcoming me into your "family". God has surely blessed me with 2 wonderful, caring daughters!! And not only has He lead them to this forum but through them he has led me here. I guess part of the reason why I've been "holding out" on getting the MRI, is because of cost. Our insurance has drastically changed with a large dedutable I'll never reach each year. I had been praying on what to do, and God answered me through my girls!!!! So, I'm just leaving the financial situation to Him. I will keep you all informed on the outcome of the MRI. I go this morning for lab work before having the MRI. God bless you all.

Mare
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3 1/2cm right AN; 9 hourTranslab, Sept.5, 2008. St. Vincent Hospital, Toledo, Ohio. Dr. Scott Dull and Dr. Aaron Benson. Physical Therapy for balance. Wear a hearing aid due to loss of hearing.

pjb

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Re: Concern from a caregiver.................
« Reply #21 on: February 02, 2010, 07:38:16 am »
Hoping all goes well for you with your tests and I know it is horrible with the insurance company costs that holds us back in getting the care we so urgently need.

My prayers are with you and your caring daughters,

Pat
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Diagnosed with a 1 cm. AN had Retrosigmoid
Approach surgery July of 2009, several problems after surgery.

mare4ever1

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Re: Concern from a caregiver.................
« Reply #22 on: February 25, 2010, 02:00:41 pm »
RESULTS OF MY M.R.I. CAME BACK SHOWING A RESDIUAL TUMOR. GUESS THEY DIDN'T GET IT ALL THE FIRST TIME. SO, NOW THE DR. IS GOING TO WATCH AND WAIT. IF MY HEARING GETS WORSE ( I WEAR A HEARING AID NOW) OR I LOOSE MY HEARING COMPLETELY, HE WILL REMOVE THE TUMOR. MY FAMILY WAS IN SHOCK. THEY THOUGHT THE M.R.I. WOULD HAVE COME BACK CLEAN. I FELT THE PRESSURE OF GIVING BAD NEWS TO THEM AGAIN!! I'M FINE WITH EVERYTHING. I HAVE PEACE OF HEART.
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3 1/2cm right AN; 9 hourTranslab, Sept.5, 2008. St. Vincent Hospital, Toledo, Ohio. Dr. Scott Dull and Dr. Aaron Benson. Physical Therapy for balance. Wear a hearing aid due to loss of hearing.

Jim Scott

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Re: Concern from a caregiver.................
« Reply #23 on: February 25, 2010, 02:14:03 pm »
Quote from: mare4ever1 on February 25, 2010, 02:00:41 pm
RESULTS OF MY M.R.I. CAME BACK SHOWING A RESDIUAL TUMOR. GUESS THEY DIDN'T GET IT ALL THE FIRST TIME. SO, NOW THE DR. IS GOING TO WATCH AND WAIT. IF MY HEARING GETS WORSE ( I WEAR A HEARING AID NOW) OR I LOSE MY HEARING COMPLETELY, HE WILL REMOVE THE TUMOR.  MY FAMILY WAS IN SHOCK. THEY THOUGHT THE M.R.I. WOULD HAVE COME BACK CLEAN. I FELT THE PRESSURE OF GIVING BAD NEWS TO THEM AGAIN!!  I'M FINE WITH EVERYTHING.  I HAVE PEACE OF HEART.

Mare ~

I'm very sorry to learn that the MRI indicated the tumor has begun to re-grow, but this is always a risk with AN surgery - or radiation.  I'm sure the news was a shock to your family but at least you've started down the right path by having the MRI and knowing the reality of the situation in time to address the re-growth, if that becomes necessary.  You'll be in the thoughts and prayers of many people and you are definitely not alone.  Your peaceful heart is well justified. 

Jim
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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.

Adrienne

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Re: Concern from a caregiver.................
« Reply #24 on: February 25, 2010, 02:20:32 pm »
I'm so sorry.  I'm glad you finally have answers, and that you were brave enough to search out what was going on.  I wish the outcome was better, but you will get through this too-and I'm thankful that you have a great family support system to help you.

(hugs)

Adrienne
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3.0 x 3.0 x 2.5 cm AN, left side.  Diagnosed Feb. 19th,2009
Retro Sig surgery with Dr. Akagami and Dr. Westerberg on May 26/09 at Vancouver General Hospital
SUCCESS! Completely removed tumor, preserved facial nerve, and retained a lot of hearing. Colour me HAPPY!

ppearl214

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Re: Concern from a caregiver.................
« Reply #25 on: February 25, 2010, 02:23:14 pm »
to mare and her loving family..... I've been following along in a quiet fashion (highly unusual for me!) but I wanted to watch how things went before I chimed in.  I am so sorry to hear that the docs may have left a small piece of the AN during your surgery, but I think you have caught on around here.... that regardless of what direction things may go from here on out, we are here to cheer you on.  

Peace of heart is perfect!  And as your sig line notes.... G_d only hands out what he (or she!) believes we can handle. I know you all can handle this.... cuz.... you have all of us to help along the way.  In my  mind... "strength in numbers" prevails... and you certainly have many "numbers" here cheering you on.

so, with that said, hang in there. I know the family will handle this as strong as mare...... and with us by your sides.

Phyl
« Last Edit: February 25, 2010, 03:54:31 pm by ppearl214 »
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"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

Sue

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Re: Concern from a caregiver.................
« Reply #26 on: February 25, 2010, 03:32:22 pm »
When you walk through a storm, keep your head up high and don't be afraid of the dark. 

No,  you'll never walk alone.

We've got your back, sweetie. :)

Sue in Vancouver USA
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Sue in Vancouver, USA
 2 cm Left side
Diagnosed 3/13/06 GK 4-18-06
Gamma Knife Center of Oregon
My Blog, where you can read my story.


http://suecollins-blog.blogspot.com/2010/02/hello.html


The only good tumor be a dead tumor. Which it's becoming. Necrosis!
Poet Lorry-ate of Goode

mare4ever1

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Re: Concern from a caregiver.................
« Reply #27 on: February 25, 2010, 04:14:11 pm »
THANK'S TO EVERYONE'S SUPPORT AND ENCOURAGEMENT. YOU ALL BROUGHT TEARS TO MY EYES :) MY DAUGHTER JUST CALLED TO SEE HOW I WAS. SHE CONFESSED SHE BROKE DOWN AFTER HAVING IT ALL SINK IN. I HAVEN'T CRIED YET. I KNOW I HAVE PEACE OF HEART, BUT I ALSO KNOW THE HUMAN SIDE OF ME,IT WILL GET THE BEST OF ME. IT'S NICE TO KNOW I HAVE TWO "FAMILIES" I CAN GET SUPPORT FROM. I ALSO DON'T FEEL ALONE AFTER I WAS READING IN THE EMOTIONAL TOPIC ROOM. THOUGHT I WAS CRAZY WITH THE WAY I'VE FELT SINCE SURGERY, TIRED, SHORT TEMPERED, ETC... I REALLY FELT A SIGH OF RELIEF KNOWING I'M NOT ALONE. THANK YOU AGAIN. MAY GOD BLESS EVERYONE OF YOU!!


MARE
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3 1/2cm right AN; 9 hourTranslab, Sept.5, 2008. St. Vincent Hospital, Toledo, Ohio. Dr. Scott Dull and Dr. Aaron Benson. Physical Therapy for balance. Wear a hearing aid due to loss of hearing.

ndk1979

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Re: Concern from a caregiver.................
« Reply #28 on: February 26, 2010, 04:10:09 pm »
Mom,
I'm so proud of you and how you are handling this news about the tumor being there again! I know I told you that the other day, but I wanted to share how I feel to everyone here as well! Mom is the strongest person I know. I don't think that if I were in her shoes I would have such a peace of heart like she does! I am trying to be strong like her, but I just don't want to see her go through all of this again. It's so great to know that she can "go through" this experience with all of these wonderful people here! It's so much more of a support that she may have gotten from us the first time she had surgery! I wish she would have known about this site and all of you strong-willed, beautiful people here! I'm just thankful that she can have that kind of support from you all now, when she needs it the most! Mom has always told us that God doesn't give you more than you can handle and that there is a reason for everything. I believe that this situation has made me a bit stronger (not as much as mom) and appreciate all of your support and concerns here! I feel like we don't have to go through this alone, like we did the first time! God bless all of you here, survivors and caregivers....your well wishes and advice are really something that is touching to all of us! And to Mom, I love you so much! I am so proud of you! We will get through this again...!
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Daughter of mare4ever1 who had an AN removed 9-5-08.

caringfmlymber28

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Re: Concern from a caregiver.................
« Reply #29 on: March 01, 2010, 05:49:30 pm »
Quote from: ndk1979 on February 26, 2010, 04:10:09 pm
Mom,
I'm so proud of you and how you are handling this news about the tumor being there again! I know I told you that the other day, but I wanted to share how I feel to everyone here as well! Mom is the strongest person I know. I don't think that if I were in her shoes I would have such a peace of heart like she does! I am trying to be strong like her, but I just don't want to see her go through all of this again. It's so great to know that she can "go through" this experience with all of these wonderful people here! It's so much more of a support that she may have gotten from us the first time she had surgery! I wish she would have known about this site and all of you strong-willed, beautiful people here! I'm just thankful that she can have that kind of support from you all now, when she needs it the most! Mom has always told us that God doesn't give you more than you can handle and that there is a reason for everything. I believe that this situation has made me a bit stronger (not as much as mom) and appreciate all of your support and concerns here! I feel like we don't have to go through this alone, like we did the first time! God bless all of you here, survivors and caregivers....your well wishes and advice are really something that is touching to all of us! And to Mom, I love you so much! I am so proud of you! We will get through this again...!

Ditto Sister!!  Love you Mom!!!
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