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Biomarker for Diffuse Scleroderma skin has been discovered!


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#1 LisaBulman

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Posted 02 February 2007 - 01:03 PM

Hi everyone,
I have been holding this weight on my shoulders for over a month now. My daugher has a a condition where she needs to have surgery. We finally made the decision to have it but but the doctor we have found that only deals with this type of condition is out of state and not participating with our health insurance. The surgery is scheduled for this month and we were anxiously awaiting to hear from our insurance company. We were told the surgery would cost over $100,000. The mail came today with a letter from our insurance company. I was shaking trying to open it. Well, after they reviewed her medical history and the info the dr sent, they approved her to have the surgery out of state!! I am so relieved! We know we will be responsible for a portion of the bill, but atleast the main, most expensive part will taken care of! WOOHOO Now I just have to figure out how to tell my little girl she is having it done......

Thanks for listening!

Hugs,
Lisa
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#2 Margaret

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Posted 02 February 2007 - 01:29 PM

Lisa ,

So happy for you and your family. It's good hearing something positive about insurance companies these days. Best wishes that your daughter has a speedy, uneventful recovery.
Take care, Everyone.
Margaret

#3 Heidi

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Posted 02 February 2007 - 01:29 PM

Hi Lisa,

That is AWESOME news!! I know this was a HUGE relief for you! I am so glad the insurance company has decided to cover her surgery. Please keep us posted on how the surgery goes.

Warm wishes,
Heidi

#4 Guest_Sherrill_*

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Posted 02 February 2007 - 01:44 PM

Hi Lisa,

I am VERY pleased to hear this news! What a relief for you!

As you say the difficult part now will be telling your daughter what is going to happen to her. Good luck with that also.

Please keep us informed on how everything goes.

Warm hugs,

#5 Shelley Ensz

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Posted 02 February 2007 - 02:40 PM

Lisa, I am tickled pink for you. What an enormous relief that must be!
Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#6 Sherion

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Posted 02 February 2007 - 03:38 PM

Lisa, How wonderful that an insurance company finally came through in a positive way. I hope the surgery goes well and that she has a speedy recovery.

Sherion

#7 nan

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Posted 02 February 2007 - 04:07 PM

Lisa,
That is wonderful news!!! I hope that all goes well for your precious child.
Nan

#8 emmie

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Posted 02 February 2007 - 05:10 PM

Lisa,

Thats the best kind of news when something positive comes about for our kids! I am so happy this financial hurdle is conquered. That is major.

Please keep us up to date on your daughter's progress. (They are both such cuties. I have 2 daughters--grown now--so I just "identify".) I wish her and the rest of you all the best.

xoxo emmie

#9 americanmike

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Posted 02 February 2007 - 06:46 PM

Hooray! I'm so happy for you, Lisa and your daughter. Nice to see some things go your way once in a while. And this is a big one!!

Hope all goes well with the surgery.

Michael in Florida

#10 jefa

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Posted 03 February 2007 - 12:41 AM

This is wonderful news, Lisa. It must be overwhelming at times to have to deal with your family's health issues. I hope all goes well and that the release of this burden gives you a little peace.

#11 LisaBulman

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Posted 03 February 2007 - 05:30 AM

Thank you!!

We were planning on fighting the insurance the company tooth and nail to get it approved or to have them pay at least the bulk of it. I guess they realized that if a local dr screwed up the surgery it would cost them a whole lot more in the long run. (she is having surgery on her spinal cord) The complications, risks and one wrong move, well, you can only imagine.

I'll keep you all posted.... thank you agian.

Hugs,
Lisa
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#12 Sweet

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Posted 04 February 2007 - 07:30 AM

Hi Lisa,

Wow, I am so happy for you!!!! I'm really really sorry you are having to deal with health issue for one of your children.....that's a toughy.

Hang in there.
Warm and gentle hugs,

Pamela
ISN Support Specialist
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#13 debonair susie

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Posted 05 February 2007 - 09:00 AM

Lisa,
I'm also glad for you... having this burden lifted has allowed you to breathe more comfortably again, huh?
The insurance companies can be pretty great, can't they?!

Hugs, Susie
Special Hugs,

Susie Kraft
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#14 janey

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Posted 07 February 2007 - 04:03 PM

Lisa,
I'm thrilled that the insurance company has approved the surgury and that your daughter is going to get the help she needs to live a healthy and painfree life. I know it was a very hard decision for you to make and it's not over. Our thoughts will certainly be with you.
Big Hugs,
Janey Willis
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#15 LisaBulman

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Posted 23 February 2007 - 07:08 AM

Hi Everyone,
I wanted to thank you all for your responses and support. We are back and the surgery was a huge success. Here is the short version....

Grace went into surgery Thursday, 2/15 at 12:15. She was not happy, but yet very brave. She was fine until they put the mask on her face and then she lost it. But that only lasted about 20 seconds and she was out. It was about a 5 hour surgery and the day seemed to go on forever. The dr came to talk us before we saw her in recovery. He said she did great and when they got in there they found exactly what they thought they would. The filum (the ligament at the end of the spinal cord) was thick, fatty and rough. It was about 4 times the size it normally should be and very tight. The nerves at the end (cauda equina) are supposed to be like a fish tail. They should move freely and equally. Graces nerves were plastered to the sides of the spinal canal with no movement at all. Lastly, there was no spinal fluid movement at all. Once they did the nerve mapping, they went in to cut the filum and it sprang up like a cut elastic. It is now two inches from where it was, the nerves are moving freely and there was immediate movement of the spinal fluid. Her recovery was speedy and she is up and moving around but slowly.

Thank you to my fellow volunteers for covering for me while I was gone! :)

Hugs,
Lisa
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#16 CFMBabs

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Posted 23 February 2007 - 07:17 AM

Your news has touched me. 1. I'm so very happy for you and your daughter 2. My own daughter has lower back problems and is presently undergoing tests to find exactly the cause. I'm not familliar with the problems your daughter has encountered but I realise that the whole episode must have been a huge worry for you and your family. What a relief to have gotten the whole thing over and for your daughter to have undergone such trauma and come out the other side, I'm sure with a smile.
My very best wishes to you and your family

Love
Barbs xxx

#17 LisaBulman

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Posted 23 February 2007 - 07:35 AM

Hi Barbs,
My daughter was diagnosed with tethered cord syndrome as well as Chiari Malformation. The tethered cord (which is her spinal cord) caused lower back pain, leg pain and fatigue, numbness in her feet and bladder issues. Hopefully all of this will be gone! She had been suffering for the past year and half. For a 6 year old, that seems like a lifetime! Please feel free to email me with any questions.

Hugs,
Lisa
Lisa Bulman
(Retired) ISN/SCTC List Coordinator
(Retired) ISN Sclero Forums Assistant Manager
(Retired) ISN Assistant News Guide
(Retired) ISN Fundraiser
International Scleroderma Network (ISN)

#18 Heidi

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Posted 23 February 2007 - 07:51 AM

Hi Lisa,

Thanks for sharing your update with us. That is truly wonderful news and brought tears to my eyes. I am sure you are feeling so relieved and I do hope the surgery gives Grace some lasting relief!

Warm wishes,
Heidi

#19 Shelley Ensz

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Posted 23 February 2007 - 08:55 AM

Hi Lisa,

I'm completely thrilled that Grace has had her surgery and come through with flying colors. It must be a tremendous relief for all of you!
Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#20 Margaret

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Posted 23 February 2007 - 10:27 AM

Lisa ,

That is such good news. Isn't modern medicine wonderful?!?!? I hope Garce continues to have a safe recovery.
Take care,
Margaret