Author Topic: Donnalynn's Husband - Please Pray  (Read 78858 times)

free2be

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Re: Donnalynn's Husband - Please Pray
« Reply #120 on: September 16, 2010, 06:35:27 pm »
Donnalynn,

We are all still praying for Jim and you daily. Wondering how it's going though, it's been a while...relatively.

Connie
Diagnosed Nov. 2008 Right AN 7 mm x 9 mm
Incremental MRIs enhancing mass
June 2010 1.4 cm x 0.9 cm extension into the CP angle
Pre-CK Stanford measurements 1.6 X 1.1 cm
9/29/10 - 10/1/10 CK completed with Dr Steven Chang and Soltys, Stanford.
6-month thru three year (8/13) follow ups MRI: stable

saralynn143

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Re: Donnalynn's Husband - Please Pray
« Reply #121 on: September 16, 2010, 08:11:59 pm »
Donnalynn, I am so sorry about the difficulty you are having getting appointments for Jim. I pray that there will be a miracle and Jim will get an earlier appointment.

Bless the Lord, O my soul, and do not forget all his benefits—who forgives all your sins and heals all your diseases, who redeems your life from the pit and crowns you with love and compassion, who satisfies your desires with good things so that your youth is renewed like the eagle's. (Psalm 103:2-5)

Keeping you all in my thoughts and prayers,
Sara
MVD for hemifacial spasm 6/2/08
left side facial paresis
 12/100 facial function - 7/29/08
 46 - 11/25/08
 53 - 05/12/09
left side SSD approx. 4 weeks
 low-frequency hearing loss; 85% speech recognition 7/28/08
1.8 gram thin profile platinum eyelid weight 8/12/08
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Larry

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Re: Donnalynn's Husband - Please Pray
« Reply #122 on: September 16, 2010, 08:18:38 pm »
Donnalynn

Sorry but i have been absent from the forum for a while.

My heart and prayers go to you, Jim and your family.

I'll send ya a PM


hugs laz
2.0cm AN removed Nov 2002.
Dr Chang St Vincents, Sydney
Australia. Regrowth discovered
Nov 2005. Watch and wait until 2010 when I had radiotherapy. 20% shrinkage and no change since - You beauty
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CHD63

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Re: Donnalynn's Husband - Please Pray
« Reply #123 on: September 16, 2010, 08:27:24 pm »
Oh Donnalynn .....

How I wish a hug and a kiss would make it all better ..... like when we were little children.  All I can really say is take deep breaths and try to refocus on the positives of how much Jim loves you and Vanessa and he is going to fight this thing with all he has.

You had previously mentioned trying to get Jim to some place in the States for treatment.  Is he just too sick and/or fragile to risk the travel?  I'm sure the financial aspect of it must be huge.  I do not know how the Canadian insurance system works but hopefully you can get some coverage going out of the system.

Many, many, many thoughts, love, and prayers coming!

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

jerseygirl

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Re: Donnalynn's Husband - Please Pray
« Reply #124 on: September 16, 2010, 08:41:09 pm »
Donnalynn,

I was crying when reading your posts. I wish I could alleviate your suffering! Hang in there... I hope our support gives you strength to go on.

             Eve
Right side AN (6x3x3 cm) removed in 1988 by Drs. Benjamin & Cohen at NYU (16 hrs); nerves involved III - XII.
Regrowth at the brainstem 2.5 cm removed by Dr.Shahinian in 4 hrs at SBI (hopefully, this time forever); nerves involved IV - X with VIII missing. No facial or swallowing issues.

Kaybo

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Re: Donnalynn's Husband - Please Pray
« Reply #125 on: September 16, 2010, 09:12:34 pm »
Oh Donnalynn~
I just don't know what to say...know that you can vent all you want to us...I will be praying...I wish I was one of those people that had all those calming and wonderful words to make you feel better, but I just don't!  God knows what you are feeling, let Him carry you along...

Peace in the eye of the storm,
Translab 12/95@Houston Methodist(Baylor College of Medicine)for "HUGE" tumor-no size specified
25 yrs then-14 hour surgery-stroke
12/7 Graft 1/97
Gold Weight x 5
SSD
Facial Paralysis-R(no movement or feelings in face,mouth,eye)
T3-3/08
Great life!

moe

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Re: Donnalynn's Husband - Please Pray
« Reply #126 on: September 16, 2010, 09:52:37 pm »
Donnalynn,
I hope and pray tomorrow is a better day. Vent, scream all you want-we are here for you, and praying non stop :-* :-* :-*
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

Jill Marie

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Re: Donnalynn's Husband - Please Pray
« Reply #127 on: September 16, 2010, 10:51:20 pm »
Donnalynn,

I suggest, NO make that, I INSIST that you go to the office tomorrow instead of calling.  If you have already called by the time you have read this and they have moved Jim's petscan up to next week or at the very latest the last week of September then disregard the following:  Now that you have cried in the produce section and have vented here it's time to take all that anger over what has been done to Jim with the lack of proper health care and all the strength you have in you because of how much you love him and head to the office that should be helping to find out what the doctors need to do next for him.

Years ago my husband hurt his back at work, I wasn't working because my boys weren't in school yet, they denied my husband L & I Insurance income because they said he didn't get hurt at work.  We had no income, my husband couldn't even get out of bed.  I took my 2 boys to the welfare office to ask for help tell the doctor and his company could settle things.  They said they could get me an appointment in 1 month, I told them it would be to late, they said I could wait there and if someone had a free minute they would help me.  By the end of the day no one had helped me so I stood on a chair and told them I wouldn't leave tell someone talked to me.  I spoke with a nice young man, got a months worth of food stamps and left.  Two weeks later they gave my husband his L & I payments. 

You need to go to that office with any documents you have to show how urgent this is and insist that they do the petscan next week and let them know that you aren't leaving tell you get that appointment.  It's a lot easier to tell someone NO over the phone then in person.  You have the strength to do this because of how much you love Jim & you know that even though all of us aren't physically there with you we are behind you all the way.  You can do it Donnalynn!  Will be thinking about you tomorrow, Jill
Facial Nerve Neuroma removed 6/15/92 by Dr. Charles Mangham, Seattle Ear Clinic. Deaf/left ear, left eye doesn't water.

ppearl214

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Re: Donnalynn's Husband - Please Pray
« Reply #128 on: September 17, 2010, 04:07:49 am »
D

You bring J and you and V to Boston, I make the call and get you a PET next week. Nuff said.  :-*  :-*  :-*

Oy, hunney.... I don't know what to say.  As you know, we reflect on the next 24 hours and in this time of reflection, know that it is ok to vent, to know that you can rely on us to be here for you.  Know that we do all in our hearts and souls to send those vibes your way to help the cause. For ALL you do for SO many, what we do seems miniscule in comparison..... but as you know, we don't "compare". We do what we can to help the cause... and know that the bloke and I are sending our wishes your way, in the hopes that the goodness you all soooooo much deserve comes quickly.

You know what I'm trying to say. Hang in there.
xoxooxoxoxoxoxox to you, my dear J and my very very dear V

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

leapyrtwins

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Re: Donnalynn's Husband - Please Pray
« Reply #129 on: September 17, 2010, 05:24:36 am »
Donnalynn -

I'm with Jill Marie.  Don't take no for an answer and dealing with people face to face does make a difference.  In addition, no one will want you "camped out" in their offices making "noise" and disturbing the other people there.  It will flat out look bad for them.  Do what you have to do to get the results you need.

Good luck and prayers,

Jan

PS - I knew Jill Marie was tough from the exercise posts, but I had no idea how tough she really is.  You go, Jill Marie  ;D
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

Cheryl R

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Re: Donnalynn's Husband - Please Pray
« Reply #130 on: September 17, 2010, 06:30:36 am »
Donnalynn, I can't even imagine how one with such serious issues can be put off like Jim has been.     Mayo Clinic in Rochester Minnesota would be a good place to go also.      If my Univ of Iowa can't take care of someone around here, then Mayo is where people go.    People from all over the world go there.      I have read in the past how sometimes sick people have been flown to a facility free with help from certain groups who do that.       Anyone here know of any who go to Canada?        I wish I knew more that would work for you.                There have been a lot of tears in the US for you and a hug to you all.               Cheryl R
Right mid fossa 11-01-01
  left tumor found 5-03,so have NF2
  trans lab for right facial nerve tumor
  with nerve graft 3-23-06
   CSF leak revision surgery 4-07-06
   left mid fossa 4-17-08
   near deaf on left before surgery
   with hearing much improved .
    Univ of Iowa for all care

msmaggie

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Re: Donnalynn's Husband - Please Pray
« Reply #131 on: September 17, 2010, 06:46:40 am »
I agree!  Years ago my late FIL was in such pain and no one seemed to know why or what to do.  My MIL drove him to the Mayo Clinic in Rochester and they literally camped out there until he was seen. Didn't take long. The squeaky wheel DOES get the grease, if only to make it go away!  Jim deserves all that grease and more.

Priscilla
Diagnosed  left AN 8/07/08, 1.9 CM
Surgery 12/10/08 at Methodist Hospital w/Vrabec and Trask for what turned out to be a cpa meningioma.

Debbi

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Re: Donnalynn's Husband - Please Pray
« Reply #132 on: September 17, 2010, 08:09:03 am »
Oh, Donnalynn!  I have been off the Forum for awhile and just now saw your post.  I am so, so sorry for all that you are going through.  I know that others who have experience dealing with the Canadian health care system can give you far better advice than I.  So, I will just say that you and your wonderful husband are in my thoughts and prayers. 

huge hugs,
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

cindyj

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Re: Donnalynn's Husband - Please Pray
« Reply #133 on: September 17, 2010, 12:14:39 pm »
Still here for and with you...

Hugs, but wish we could do more,

cindy
rt side 1.5 cm - Translab on 11/07/08 Dr. Friedman & Dr. Schwartz of House Ear Institute,
feeling great!

"Life consists not in holding good cards, but in playing well those you do hold."  Josh Billings

Jim Scott

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Re: Donnalynn's Husband - Please Pray
« Reply #134 on: September 17, 2010, 12:31:12 pm »
Donnalynn ~

Although, as much as I wish I could, I can't be in Alberta to assist you and I won't burden you with a lot of words because you and your Jim need more than that, now.  What I can do, and what I know many others are doing right this minute, is to pray for you and Jim and for this terrible situation to be resolved, quickly.  That can do far more than any words of comfort I might be able to come up with.  You are not alone, Donnalynn.  This will pass. 

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.