Dizzy? Headaches? Insomnia? Ringing in Ears? Could be Dysautonomia

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http://www.msnbc.com/news/345977.asp

Someone to watch over me

With hope running out, a woman battling a mysterious illness reaches out —

online

28-year-old Detloff, at home on her computer.

NBC News

Dec. 14 — Maybe you’re ordering holiday gifts online this year or getting

e-mail greetings instead of cards. In more ways than we can even comprehend,

the Internet is changing our lives. But this story puts the phrase ‘life

changing’ in a context that’s easy to understand. The woman you’re about to

meet suffered from a debilitating condition that doctors could do little to

ease. Her desperation seemed to leave her with two options — prayer and the

World Wide Web. Correspondent Sara reports.

A BIRMINGHAM optometrist suffers from a mysterious illness — could a

stranger hundreds of miles away hold the answer she’d been searching for?

Would an Internet encounter give a woman a second chance at life? Or would

it merely offer false hope?

It’s October 1999, and 28-year-old Detloff is trying to build a

successful optometry practice. has plenty of appointments, there’s

just one problem — it’s getting harder and harder to work. She can’t stand

up for more than ten minutes at a time without the risk of fainting.

“I take breaks whenever I have a chance, in between seeing patients,” says

.

Once active and healthy, is now so light-headed that it’s difficult to

drive. A red light or stop sign provides the moment she needs to let the

blood flow back to her head.

Lauri Hogle, left, and Detloff

During the last two years, has also been suffering from excruciating

headaches, insomnia, and ringing in her ears. She even teaches her Bible

class lying down. ’s symptoms were so unusual that her doctors were

utterly baffled.

“It’s suffering that’s not just from pain,” she says. “You can go nights

without sleeping.”

A merry-go-round of doctors, who ordered a dizzying array of tests from

routine blood work to sophisticated MRI brain scans. But all they could tell

was that she had dysautonomia — a problem regulating her blood

pressure. was taking 25 pills a day, just to function. Some doctors

suggested the real problem might be all in her head.

“I was sent to a psychiatrist because no one really knew what was going

on,” says . “All the tests came back negative. And it’s really hard to

find hope when someone’s telling you there is absolutely nothing wrong with

you, you are just depressed.”

says she couldn’t endure it if it weren’t for her faith and her

devoted husband, Pete. “I didn’t consciously plot out any kind of suicide

attempt,” she says. “I was just really praying either for strength or that

God would take me home, one of the two.”

LOOKING FOR ANSWERS

Frustrated that those in the medical community didn’t seem to have the

answers, turned to the Internet to do her own research. “The first

thing that popped up was the National Dysautonomia Research Foundation

discussion forum,” she says.

says she found people who had symptoms similar to hers. “It was full

of information,” she says.

Did it give her hope? “That gave me more renewed hope,” she says, “and I

just felt that this was really a road that God was leading me down.”

Was it possible that after seeing so many experts, one of these

cyber-strangers might help solve the mystery of her illness?

But while knew that some on the Internet offered sound advice, others

were spreading rumors of miracle cures and wonder drugs. Still, she found

herself riveted by the postings of one woman in particular.

As they began to correspond, this woman, someone she’d never met, seemed to

know her symptoms inside out and seemed to understand, in a way no one else

did. Was it hope or hype? wanted to believe.

“It was so very hopeful and encouraging because it would offer new hope,”

says .

LOGGING ON FOR HOPE

Could it be possible that her new e-mail friend somehow knew

something all the experts didn’t? After all, the friend was recommending a

neurosurgeon none of ’s other doctors had ever mentioned. He worked at

the prestigious s Hopkins Hospital in Baltimore, hundreds of miles away

from her Birmingham home.

Desperate to get better, headed north for a consultation and

who was there to greet her, but the woman she’d only known through e-mail —

Lauri Hogle.

“You are such a strength to me, such an encouragement.”

Neurosurgeon Dr. Jon Weingart exames at s Hopkins Hospital in

Baltimore.

has come with big dreams. But to see if they’ll come true,

first it’s time for a familiar drill. must provide details of her two

year ordeal to yet another person in a white coat. But this doctor seems to

offer hope — neurosurgeon Dr. Jon Weingart tells her dizziness,

fatigue and headaches may be a an abnormality in her brain, but he’ll have

to take a look at her MRI scan to know for sure.

In the brain, at the base of the cerebellum is this tonsil-shaped

brain tissue. In rare cases, that tissue is pushed down so that it crowds a

crucial opening at the base of the skull, where the brain meets the spinal

cord, much like a cork in a bottle. This can block the flow of spinal fluid,

causing neurological problems. This unusual abnormality is called a “Chiari

One Malformation” or Chiari, for short.

Chiaris are rare, only occurring in about one of every 6000 people.

While doctors have known about them for years, with the increasing

availability of MRI brain scans, many more are being diagnosed. Still, the

condition is unusual enough that sometimes a doctor won’t think to check for

one or may not spot the Chiari on a brain scan.

“The whole problem with a Chiari malformation is that the skull is

not large enough for the brain,” says Dr. Weingart.

So you’ve got a brain that’s too big? “That’s what I always tell

people,” says Dr. Weingart. “The truth is that they just have too small a

skull.”

Dr. Weingart says it appears ’s cerebellar tonsils may indeed be

blocking her flow of spinal fluid.

It’s not an extreme case. So was a Chiari really causing all of

’s problems or was it something else entirely? Dr. Weingart needed more

information to make an evaluation. The next step was a physical exam.

Dr. Weingart asks to stand, to check her balance. When Dr.

Weingart asks her to close her eyes and balance, stumbles.

Dr. Weingart says ’s balance problems are indeed evidence of a

Chiari.

“I think that her symptoms, especially her headache, her balance

problem, it is very reasonable for her to consider surgery,” says Dr.

Weingart.

And finally the news she’s been waiting for — Dr. Weingart tells

he will perform the surgery two days later.

INTO SURGERY

“I know it sounds funny for someone who is about to have a serious

surgery,” says , “but I am very excited.”

But how does surgery correct such a problem? Dr. Weingart says

removing a small portion of ’s skull will create more room, thus

relieving some of the pressure on her brain and allowing spinal fluid to

flow more freely. He says it’s a little like remodeling.

“When you have a small family room and you want to make it bigger and

you have your living room next to it,” says Dr. Weingart, “so you knock the

wall out of the living room and suddenly you have a big open room.”

Still, this isn’t a house. It’s ’s brain and the risks are

rare — but real. Spinal fluid could leak, and cause a dangerous brain

infection, “meningitis.” There’s also the risk of excess bleeding, and a

remote chance of injury to the brain. And the recovery could be slow and

painful.

Is scared? “No,” she says, “I’m not scared. I’m scared of

little things like needles but not big things like…”

Like having the back of her head opened up?

“Right,” says . “It’s amazing to me right now just knowing that

this is about to happen, that I am at such peace.”

After two years of suffering, has finally found the answer? Or

is she seizing on a false hope, taking an unnecessary risk, brain surgery,

when there are those who question if it will do anything at all?

After two years of suffering, Detloff hopes that today will

mark the beginning of her recovery. Just a few last-minute conversations

with her neurosurgeon, Dr. Weingart before it’s time for the major

operation.

seems remarkably calm for a woman who’s about to undergo brain

surgery. Her sister, father, and husband, Pete, are all hoping this surgery

will restore ’s energy so she can once again hike, swim, and enjoy

life.

Is it scary to be hopeful because you must also know this may not

work?

“I think anybody who has a disease like this should never give up

hope,” says Pete.

But Pete knows full well that while this is not a dangerous

procedure — there are risks — and even if the surgery goes well, there’s

always the chance her symptoms won’t disappear. Still, Dr. Weingart is

optimistic. What kind of results has he had in terms of when he’s done the

surgery?

“In patients who have symptoms like fatigue, if they stand up they

get dizzy and want to pass out,” says Dr. Weingart. “Their headache, their

neck pain, goes away with the surgery.”

To contact the people in the story

• Detloff is reachable through e-mail at jsdhope@...

• Lauri Hogle is reachable through her Web site

• Dr. Jon Weingart

s Hopkins Hospital

720 Rutland Avenue

Baltimore, MD 21205

• Dr. Carmel

Chairman, Dept. of Neurological Surgery

New Jersey Medical Center

90 Bergen St.

Suite 7300

Newark,NJ 07103

Perhaps no one knows that better than Lauri Hogle, ’s e-mail

friend whose remarkable story is what brought to Baltimore in the

first place.

Lauri says she, too, had been living with a seemingly incurable

illness with symptoms very similar to ’s.

“It was just very frightening,” says Lauri. “I can’t describe it, it

was just like your hands go numb and you can’t feel anything.”

Back in 1991, when she was just 25-years-old, Lauri’s life as a

pianist, choir director, wife and mother, changed almost overnight.

“The fatigue was overwhelming,” says Lauri, “and I just felt like I

had the flu all the time.”

Like , Lauri would pass out if she stood for too long. It was

difficult to care for her young children unless she could sit or lie down.

Lauri’s husband says doctors were unable to pinpoint what was

wrong. “We heard everything from lupus to multiple sclerosis to rheumatoid

arthritis to cancer, lyme disease,” says . “All these thing we heard.”

Doctors told Lauri she could have a syndrome like chronic fatigue or

fibromialgia, but those were just labels for her symptoms. Like , she,

too, was diagnosed with that blood-pressure disorder, dysautonomia.

“There were many moments when I would scream in my heart, why?” says

Lauri. “What is going on?”

And just as had turned to the Internet in a desperate quest for

information, so had Lauri before her, contacting anyone who might know what

was wrong with her.

“I didn’t know how I was going to go on,” says Lauri. “But I did. I

would pray for strength. God, just give me strength for this hour.”

Time was slipping by, seven long years without answers, as Lauri

missed milestones, little and big, in her daughters lives.

“I saw other moms riding bikes and stuff,” says her eldest daughter

. “I was wishing that my mom would be like that.”

What was she scared of? “I was scared that she was going to die,

because she told me that she might die if she doesn’t get help soon,” says

.

At what stage did she think, “I’m going to die?”

“Last spring, I watched many, many organ systems in my body

deteriorating,” says Lauri. “I was on so much medication and there were no

answers.”

Lauri asked church leaders to pray for her.

Just as learned of a potential cure through that e-mail from

Lauri, Lauri also found answers from a stranger online.

A SHARED EXPERIENCE

What happened is the kind of story it seems you would only hear on

the Internet. After suffering a bout of tonsillitis, Lauri logged on to her

computer, looking for solace and support. She had more than 200 messages —

too many to read — but one was impossible to ignore. Ironically, it

mentioned tonsils. And while it turned out to have nothing to do with her

sore throat, it would provide the clue she’d sought for seven long years.

“This woman had written a message saying that her daughter was having

surgery at s Hopkins on an area of the brain called the cerebellar

tonsils and she had the same symptoms I did,” says Lauri. “My heart just

flipped.”

That simple e-mail led Lauri to neurosurgeon Dr. Weingart — the same

doctor she would later recommend to .

“When I saw her, she was lying on the examining table and couldn’t

really sit up,” says Dr. Weingart. “She complained of headaches which were

constant.”

He soon discovered she had a Chiari, and Lauri became Dr. Weingart’s

first adult patient with these symptoms to have Chiari surgery. The results

were nothing short of extraordinary.

“To be quite honest, I was flabbergasted with her response,” Dr.

Weingart. “I still find it amazing.”

Lauri Hogle is now completely healthy — a remarkable transformation.

But will what worked for her, help people like Detloff?

Dr. Carmel, chairman of neurosurgery at the New Jersey Medical

School, is concerned. “Would you have your head opened on a possibility?”

asks Dr. Carmel. “Wouldn’t you want some proof? Don’t you want a proven

therapy?”

While he’s never met or Lauri, he’s a firm believer in Chiari

surgery — but only for the narrow group of people whom he says clearly need

it.

He warns that those suffering from mysterious syndromes are often

desperate, and worries they may be willing to undergo brain surgery on

little more than a hope.

“Most of them have tried two or three or four or 10 therapies and all

failed,” says Dr. Carmel, “and so they are looking for something magic to

take away their pain.”

But is that the case for ? Will surgery really make her

fainting, dizziness and fatigue disappear? Four hours after her operation

began, Dr. Weingart emerges.

Dr. Weingart says everything went fine. No problem. She is headed

over to the intensive care unit.

That was six weeks ago. But Dr. Weingart says the healing process

takes time. He says that it could be three months to a year before he’ll

know the extent of ’s recovery.

“My hearing has improved,” says . “The pain is gone from my

ears. Headaches are almost completely gone. I still have some problems

staying up during the day, staying out of bed, and that’s because of my

blood pressure regulation.”

For now, says she’s tired and weak, but ever hopeful and dreams

that one day, she’ll feel as good as the stranger she met on the

Internet—the woman who’s recovery is her inspiration — Lauri Hogle.

Looking for more information?

These Web sites can help

• American Syringomyelia Alliance Project (ASAP)

P.O.Box 1586

Longview, TX 75606

903-236-7079 or 800-ASAP-282

http://www.chiari.com/

• World Arnold Chiari Malformation Association

31 Newtown Woods Road

Newtown Square, PA 19073

610-353-4737

http://www.pressenter.com/~wacma/

• National Dysautonomia Research Foundation

P.O. Box 21153

Eagan, MN 55121

651-267-0525

http://www.ndrf.org/

• National Institute of Neurological Disorders and Stroke: An institute of

NIH

800-352-9424 or 301-496-5751

http://www.ninds.nih.gov/

• MEDLINE: A general information Web site run by the National Institutes of

Health

http://www.nlm.nih.gov/MEDLINEPLUS/

• Chronic Fatigue Syndrome and Fibromyalgia Information Exchange Forum

http://www.co-cure.org/chiari.htm

• Oregon Fibromyalgia Foundation

http://www.myalgia.com/

• General information on Chiaris