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sallyc

Help Please! Looking for backup

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Hi Guys,

 

I'm up to my eyeballs on my appeal document which is almost ready to go.

 

One thing I thought I'd throw it to the mix is the fact that my adrenals were twice the normal size. I know others have had large adrenals, and I know that not all Cushies have enlarged adrenals, but I can't find any real hard evidence.

 

I found one study that showed that 70% were enlarged through a CT scan, but nothing about pathology.

 

Any help would be terrific.

 

Thanks & I promise to get to my PMs soon, I'm crazy busy.

 

Sally

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Hey Sally!

 

What are you looking for exactly? What would you like the article to say? That large adrenals is damaging, or something specific about the pathology? I have access to some medical databases so I might be able to help.

 

Maybe that large adrenals = likely Cushings?

 

Help me help you :) Hehe

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I do not know this person or have any connection, he just seems like a guy who would answer a question for you. I have gotten some good info from this site.

This guy is a pathologist, here is some info from his site

 

click here

 

It looks like you can e-mail him, maybe you could tell him what you are looking for. It looks like he appreciates donations to a childrens fund.

 

"The Pathology Guy"

Ed Friedlander MD

1750 Independence Boulevard

Kansas City, MO 64106

816-283-2202 (Gwen Dodd)

Fax 816-283-2251

This is my personal site,

unconnected to any employer!

 

E-Mail to: scalpel_blade@yahoo.com

 

 

If you're a private individual who's enjoyed this site, and want to say, "Thank you, Ed!", then what I'd like best is a contribution to the Episcopalian home for abandoned, neglected, and abused kids in Nevada:

 

St. Jude's Ranch for Children

PO Box 60100

Boulder City, NV 89006--0100

 

I've spent time there and they are good. Write "Thanks Ed" on your check

 

Good luck,

Teresa

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Thanks everyone!

 

I apologize for the quick note and the assumption that people knew my history! Here is the short version of what's going on.

 

I had Cushing's before and had surgery in Los Angeles in 2003. I live in Canada, so I paid for the surgery myself, and then appealed against my government run healthcare system to recover the costs. I did not expect to win, but I was so sick that I felt I didn't have a choice in the matter. I ended up winning my appeal (YAY!) and had my costs reimbursed.

 

Fast forward 5.5 years and I've finally been re-diagnosed with a recurrence. I fully expect to have surgery here in Canada, but I am refused treatment here, again. I ended up going to the States again, having a BLA and am now in the process of appealling again.

 

I have a ton of very good backup and arguments, but thought I would do well sealing the deal with my pathology showing my adrenals were 2x normal and backing it up with documented evidence that this is often seen in people who have been dealing with Cushing's. There's not a ton out there, but I will now check out all of these links.

 

Thank you so much, it will be a long time before I hear anything, but you all will be some of the first to know how it goes.

 

Hugs,

 

Sally

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Hey Sally!

 

I don't have any articles to direct you to, but I just wanted to say good luck with your appeal and I hope you are still feeling well after BLA!!

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