REGARDING TANYA’S BRAIN SURGERY:

July 30, 2010 After looking at numerous MRI's and weighing the potential good or bad outcomes, Tanya’s Surgeon (Dr. Daniel Kelly) and colleagues agreed that surgery is simply too risky. Therefore, there will be no surgery. Tanya has been referred to an Endocrinologist in San Francisco and will be going to meet up with him very soon. The family is of course disheartened by this news, but hope lies in the fact that perhaps further treatments (radiation for example) will make enough of a difference for surgery to take place sometime in the future. Your prayers are greatly appreciated.

Acromegaly Hub Page

You can also help us to spread the word about Acromegaly and other pituitary diseases by "voting up" our HubPage article

More Good News!

I spoke with Tanya's Mom (Karen) last night and although Tanya's IGF-1 levels are ever in fluctuation, her current numbers are 754 (a reference rate is 64-344).  Even though it's a roller-coaster ride with Tanya's levels, Karen believes that the Somatuline Depot is playing a strong role in lowering Tanya's IGF-1.

News13 and AMR Video

Click on the headline of this post if you don't see the video, as it appears there's a "Blogger" technical difficulty.

American Medical Response/Medic West to the Rescue!

We're so thrilled that we heard from Michael Gorman (on behalf of his wonderful employees!) the General Manager of American Medical Response, in our request for transporting Tanya both safely and comfortably to and from her upcoming brain surgery!

Here's what Michael had to say:

"Hello Tanya! I hope this email finds you well.  I am the general manager for American Medical Response and Medic West Ambulance here in Southern Nevada.  We are the men and women who respond to the nearly six hundred 911 calls per day in Clark County (including Las Vegas and North Las Vegas). My employees saw your story today on Channel 13 news and the calls came pouring into my office asking if there was a way for us to lend our assistance to you.  I am happy to say that I back their sentiment 100% and would like to know if we can set up a time to talk about the resources we have that can get you to your doctor’s appointment in California.  You will see my cell phone listed below – that is the fastest and most direct way to get a hold of me (or email). I look forward to speaking with you soon! My Best, Michael J Gorman"

"We at AMR and MedicWest were moved when we learned about Tanya’s story.  We immediately decided that we could provide Tanya with ambulance transportation to California where she will receive the medical care she needs.  We are honored to help her with this step during such a difficult journey, and wish her and her family our best.”
~Tony Greenway, EMT-P and Manager of Medic West Admin 

Michael, Tony and all the fine men and women at American Medical Response and Medic West...WE THANK YOU!

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Additional thanks of appreciation go out to all the wonderful emails we got with offers of help, both transportation-wise and monetary!!!
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In addition, News13 in Las Vegas is coming over to the house tonight to do a follow-up story on this entire wonderful chapter of the journey.  CLICK HERE to see the video

Getting Tanya To Her Sugery...The Word Spreads!

ABCNEWS/Health

Woman With Gigantism Too Big To Get to Hospital for Surgery

At 6-feet 11-inches and 372 Pounds, Tanya Angus Can't Fit in Car or Van Anymore

By SUSAN DONALDSON JAMES

July 14, 2010 --
Tanya Angus, a beautiful 21-year-old who rode horses, danced and had a boyfriend, one day noticed changes in her 5-foot-8-inch frame: Her shoes didn't quite fit, her jeans were too tight and her hands got bigger.
"She was perfectly normal, but by age 22 she had grown three inches," said her mother, Karen Strutynski of Las Vegas, Nevada. "Nobody knew what was going on."
Angus, who lived in Michigan and was a supervisor at a Walmart, began to worry when even her face and head got larger. Her bosses also noticed -- and fired her. And her boyfriend left when his parents began to ask, "Is she a man?'"
Tanya decided to return home in 2002. When her sister picked her up at the airport, she "freaked out," because she didn't recognize Tanya.
The doctor took one look and diagnosed acromegaly, also known as gigantism, caused by a tumor in her brain that is pushing on her pituitary gland, causing it to produce an excess of growth hormone.
Today, at 31, Angus is 6-feet 11-inches tall and has ballooned from 135 to 372 pounds.
"I don't know how to explain how it is, being a giant," Tanya told ABC's affiliate KTNV. "I put my shoes on in the morning, I'm like, 'Ugh, gosh they're growing again. I'm growing again.'"
According to her family, Tanya is the only known documented case in the world in which surgery and medications cannot control her growth.
She has had three surgeries: one 13-hour operation nearly killed her, and another caused a stroke that took away most of her hearing.
Nearly crushed by her weight, Tanya is scheduled to go to undergo surgery at Saint John's Health Center at John Wayne Cancer Institute in Santa Monica, Calif., sometime this month.
But she is so big that her loved ones have no idea how they will get her there.
"She's outgrown three vehicles already," said Strutynski, 54, a medic who works three part-time jobs.
"If I could stick her on a regular airplane it would be no problem, a couple hundred dollars and she goes, but she doesn't fit," she said.
Sometimes Tanya can squeeze in to the passenger seat of their minivan, but since she has the legs of a seven-foot-tall person, it's too painful to make the five-hour trip to California.
"The alternative is for her to lay in the floor of the mini-van almost the entire way," said her mother. "That's something she's dreading almost as much as the surgery. "
"That scares me more than anything," Tanya said. "It's hard enough to think about what you're going to go through and then think about how much pain you're going to be in even getting there."
Strutynski is hoping someone will donate a modified vehicle or find a way to get Tanya to California on board a private plane.

Acromegaly Affects Organs, Too

"The tumor has been growing from the time Tanya hit puberty," said Karen Strutynski. "Her back is collapsing due to the overgrowth. As she grows her bones weaken and they break down. She is so big, her spine looks like a boomerang."
"When she grows, everything in her body grows -- her lungs, kidneys, bladder," she said. "Her body is literally having a hard time and she is so uncomfortable."
In more than 98 percent of the cases, acromegaly is caused by a benign tumor of the pituitary gland that secretes excessive growth hormone, according to the Pituitary Network Association.
Acromegaly is not that rare, and most tumors are undiscovered and under-treated because doctors are not educated in either diagnosis or treatment, according to the PNA.
The University of Maryland Medical Center reports six cases in every 100,000, but many cases go undiagnosed or under-treated because doctors are not educated enough about the disease.
Two celebrities with the syndrome are Andre the Giant, the French wrestler who died in 1993, and Richard Kiel, who starred in several James Bond films in the 1970s as "Jaws."
If acromegaly is not diagnosed and treated, it can lead to serious damage to vital organs, such as the kidneys, liver, thyroid gland, spleen, pancreas, and parathyroid glands.
Symptoms generally develop slowly over years. Left untreated, it results in altered facial appearance and enlargement of the hands and feet.
In Tanya's case, the medications and prior surgeries have failed to stop the growth.
Her shoes -- 15-1/2 at the moment -- have to be custom-fit and her ring size has jumped from 6-1/2 to 20. Like others with same condition, she has headaches, tiredness and sleep apnea. She wears an oxygen mask at night.
The tumor has also caused arthritis and diabetes insipidus, which makes it hard for her body to maintain hydration.
Though she was once able to walk, her knees can no longer hold her weight, so she is mostly confined to a reclining wheelchair. Lying flat on her back is not only painful, but dangerous because it puts too much pressure on her fragile organs.

Tanya Angus Has High Spirits, Despite Pain

Tanya is on multiple drugs, including a thick-Vaseline like medicine that her mother injects monthly. Much of the medication is for her excruciating pain.
The family has health insurance, but they have already spent $200,000 of their own money on her care. The medicines alone cost $45,000 a month.
"My husband is running out of CDs," said Strutynski. "We bought a 22-foot motor home to travel east, and bought it on a loan and there wasn't enough for a downpayment, so he traded in his Corvette."
Everything in her home is custom made, from her reclining wheelchair to the enormous bed with a specially-padded mattress.
As a former horseback rider and swimmer, Tanya finds being weightless in the backyard pool therapeutic, although it takes two people to get her in the water.
But her spirits are extraordinary, according to her soon-to-be-godmother Tina Valle, who rented an apartment to Tanya and her sister and now runs Tanya's website.
"Karen and Allen [Strutynski] came and wanted a lease for their daughter and told me she had gigantism," said Valle, 53, who lives in New Mexico.
"I thought OK, I have seen that in books, but when I saw Tanya came in ? wow ? she is big, she is really big," she said. "And she weighed a lot more at the time. But her personality came through so fast and her size dissipated and I fell in love with her right away."
"She is the kindest, sweetest, most loving girl," said Valle. "When people meet her they want to give her everything and want to do anything for her."
Already, several people have responded to Tanya's plea for help, offering ideas and donations to get her to California for surgery.
"We're thinking, if only we could get a private jet that would be perfect," said Valle. "Whatever comes our way, we are open to it."
Tanya's tumor is tangled around her carotid artery, which makes surgery complicated. But if she makes it through, Tanya will undergo another one to reinforce her spine.
Her mother said she is "hopeful" for success in stopping the growth.

"Two years ago, they told me she was terminal and I asked, 'Where is her date stamp?'" said Strutynski. "She's a fighter and she knows mom is here and will fight with her."

Copyright © 2010 ABC News Internet Ventures

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New TV News Story...

"Surgery to stop Gigantism is too painful to get to"



Thank you News13 for actually listening to your viewer's and at the same time, helping us to help Tanya!


News13 in Las Vegas, NV.

Thank You, Jon Smith...

This is so very cool...

A man in Edwinstowe, England named Jon Smith wrote to Tanya at the time we posted her need for the Crayola Crayon keyboard.

When I told Jon that donation request had been filled, he surprised Tanya with something very special and handmade by him for her...Record Jewelry (some of you may know it as 'vinyl')!

What's really sweet is that the records Jon used are two of Tanya's fav's: Aerosmith and the song "Hero" by Mariah Carey.

If people know anything about the real Tanya Angus, they know that she LOVES jewelry...

Way To Go, Jon!!!

Robert Knutzen of PNA is Retiring...

'In 1990, shortly after being diagnosed with the pituitary disorder Acromegaly, Robert saw an enormous need for an organization to help pituitary patients, so he created the non-profit, Pituitary Network Association. Since that time, he has worked as an advocate on behalf of pituitary patients. He has garnered the support and respect of top medical professionals who recognize the importance of raising pituitary awareness. This coalition between the medical and patient communities has achieved a remarkable level of success in educational endeavors.'

But wait, there's more! Robert is starting an exciting new chapter in his life! Please visit www.TanyaAngus.com homepage for the rest of the story as well as a Press Kit!

A Message from Karen...

"I just have to tell you all something that you might already know from one of the News3 media clips…I have this 'thing' about angels.

When we met Tina 5-6 years ago, it was truly a blessing. Tanya and I were talking recently about how Tina would kind of take Tanya under her wing. I so appreciated it, because it was important for Tanya to keep her independence as her disease progressed.

As Tina is in our life now, we prepare for another brain surgery. With Tanya’s health fluctuating, Tina plays an important role and is considered by us to be Family (she’ll soon be Tanya’s God-Mother). She cares for Tanya’s well-being by doing what she does with the website (such as screening email content, designing/maintaining and ever updating the website and blog); as well as contacting people and helping us sort out what needs to be done.

All of this helps me to be able to spend more time with my girls and gives me more time to work with the doctors regarding my daughter’s health issues. We could not survive without all the help Tina is assisting us with. Tina is an angel to our family.

Love and Blessings, Karen"

July 01, 2010

VIDEO: Tanya's Rings ~ Aired May 13, 2009

This is the original breaking news story regarding our much loved Tanya. I contacted News3 and heard back from the Special Projects Producer, Eric Wiener. Eric was nice enough to send me this clip. Thanks Eric, Collette Wieland and News3!

From Tanya's Rings ~ News3 May 13, 2009