What Will You Pay For Obamacare? Depends On Where You Live.... Katy Hall khall@huffingtonpost.com, Jan Diehm jan.diehm@huffingtonpost.com Posted: 09/25/13 EDTse

The cost of enrollment in the health care exchanges that open Oct. 1 will depend on a person's age, family size, tobacco use, income — and geographic location, with significant variation among cities and states. The average nationwide price of basic coverage was $249 a month, not including tax credits that could reduce the cost for many Americans, according to a report the Obama administration released Wednesday.

Why is the cheapest "bronze" plan just $144 in Minnesota and $425 on average in Wyoming? Prices hinge on many factors, including how much health care services cost in the region. Premiums on the health insurance exchanges also depend in part on how many insurers are competing in the local market.

Story continues below map

Infographic by Jan Diehm for The Huffington Post.

“The more choices you have, the lower the premiums,” a senior administration official told ThinkProgress. “States with few insurance companies who didn’t get a lot of new competitors this coming year, still have higher premiums.”

These prices may not reflect what consumers will actually pay, as more than half of the uninsured will be eligible for federal subsidies that would reduce the cost of coverage to less than $100 per month.

Because most Americans already have coverage through their employers or government programs, only a small slice of the population is likely to enroll in the health care exchanges. 

Tomorrow...

Thanks I fucking love science for the image!

If you are Uninsured or Under Insured Relief is just 4 day Away! Hang in there!

My story in Sligo SDA Newsletter

This is my story as it appeared in Sligo SDA Newsletter...


http://sligochurch.org/dawns-testimony/?utm_source=September+26%2C+eWeekend&utm_campaign=New+e-Weekend&utm_medium=email

Dr. Carmen Harra, Author, Clinical Psychologist and Relationship Expert ....The 7 Things You Must Do Today..... Posted: 09/25/2013 8:23 am Huffington Post

The majority of us have learned to see life as a routine -- we've stopped thinking about what we should do and instead only think about what we need to do. But living consciously is a choice and tiny deviations from our daily grind will help us make choices that we can be proud of. Several simple actions can shift our state of mind to cultivate a sense of tranquility about our life circumstances and an understanding about the world around us that goes beyond an everyday level.

Perform these seven deeds today to strengthen your energy, advance your wisdom and elevate your awareness:

Show patience. Our patience is tested in small ways each day. It may be morning traffic, a long line at checkout, or a particularly slow person walking in front of us. Pass your challenges of patience with a bit of compassion and a large calming breath. Remember that everything can wait but nothing is worth you taking a wrongful action that can never be taken back.

Thank yourself. We thank each other all the time -- for holding doors, minor favors and common services. But when is the last time you thanked yourself? Stand in front of a mirror and smile at your reflection. Express self-gratitude in a few simple words. Thank yourself for your lifetime of hard work, your generous nature and your drive to succeed. You of all people deserve the recognition.

Tell three people you love them. How good does it feel to hear the words "I love you?" We simply don't tell our dear ones that we love them often enough. Instead, we take our time with others for granted until we no longer have them in our lives. Call three people you care about today and tell them just how much you love them. Consider calling someone you don't speak to on a daily basis, too, and expressing to them your heartfelt affection. Spreading love is contagious, and the more you share it the more you will receive it.

Take time for serenity. Our hectic schedules don't allow for much "me" time. We run around taking care of business, chores and others so that we often forget to take care of ourselves. Take 30 minutes out of your day (today and every day) simply to bond with yourself in your favorite way. Bask in the beauty of your own company. Take a walk, write down your thoughts or meditate quietly. Do whatever helps you discover your deepest layers.

Put yourself in someone else's shoes. Rarely do we understand how others feel. Instead we are quick to judge, blame, and become angry in the heat of disagreement. We don't realize how easily we would resolve our issues with others if we simply put ourselves in their shoes for just a moment. The next time you don't see eye to eye with someone or a person irritates you, halt your emotions and ask yourself, "Do I know what this person has been through today?" Pleasantly surprise others by showing compassion instead of intolerance.

Detach from your past. Granted, detaching from negative experiences in our past is easier said than done. But it is something we must all learn to do in order to progress. The easiest way to detach is to forgive, both ourselves and others, for prior mistakes. When you find yourself thinking about a hurtful memory, remind yourself that it has passed and never needs to reoccur. Force the harmful thought out of your mind and imagine a positive opposite happening in the near future.

List your ambitions. Never underestimate the power of a list. Writing down a thought or intention is your first step towards bringing it to life; it has now become a tangible object on the paper. Creating a list of what you'd like to accomplish will not only spur momentum within you, it will prioritize your needs and desires within your mind. This will help you understand where you need to start, what you will need to do, and how to proceed towards your goal. Compile an agenda of the top ten things you'd like to achieve in the next year, being honest and realistic to your specific wishes. Fold your list and carry it with you wherever you go. When faced with a significant decision, glance over your list to ensure that your actions are in accordance with your ambitions.

Our choice of actions carries us through life day by day. But when we don't expand our actions to include conscious decisions, we limit our capacity and well-being. The true power and purpose of our potential becomes evident when we interrupt our routine and introduce small reminders of grace into everyday life.

To doing only great things,
Dr. Carmen Harra

Brain Myths Believed By Most In U.S., Poll Shows

By Rachael Rettner, Senior Writer 

Published: 09/25/2013 09:31 AM EDT on LiveScience

Nearly two-thirds of Americans mistakenly believe that humans use only 10 percent of their brains, according to a new poll on brain health.

The poll, which surveyed more than 2,000 Americans, found that 65 percent of respondents agreed with the statement "People only use 10 percent of their brains on a daily basis."

In reality, that statement is a myth. Brain imaging technology shows that people use their entire brains. Although not all parts of the brain are active at the same time (just like people don't use all their muscles at once), throughout the day, all the parts of the brain will be used.

Americans also have other misperceptions about the brain and brain diseases, according to the new poll, which was conducted by Harris Interactive on behalf of The Michael J. Fox Foundation, a nonprofit organization that funds research on Parkinson's disease. [10 Things You Didn't Know About the Brain]

For instance, those surveyed said on average they thought 36 percent of Americans would develop a brain disease in their lifetimes, but the actual number is closer to 60 percent.

And 71 percent of those surveyed agreed with the statement "Men and women are at equal risk of developing brain disease." But studies show the risk of developing certain brain diseases varies by sex. For instance, men are slightly more likely to develop Parkinson's disease, while women are more likely to develop multiple sclerosis.

Only about half of survey participants knew that loss of the sense of smell is a sign of a brain disease. A loss of smell has been linked with all brain diseases, and more than 95 percent of patients with Parkinson's disease have lost some of their sense of smell by the time they are diagnosed, the Michael J. Fox Foundation says.

One of the goals the foundation had in conducting the survey was to gauge how involved Americans feel in the search for disease cures. Just 31 percent said they thought they could personally help to find a cure.

However, "there are many ways patients and their loved ones can help accelerate the search for cures," Deborah W. Brooks, co-founder and executive vice chairman of The Michael J. Fox Foundation, said in a statement.These include"participating in clinical (human) research studies, providing a one-off blood or saliva sample for genetic testing, or even just completing a survey," Brooks said.

The Gift of Listening...

Hydrocephalus, Symptoms and Diagnostic Tests, Treatment

Hydrocephalus (hī′drō-sef′ă-lŭs) is an abnormal accumulation of cerebrospinal fluid (CSF) within cavities of the brain called ventricles.

Diagnosis of Hydrocephalus

If you think that you or someone you care about may have hydrocephalus, we recommend you learn about the symptoms and diagnostic tests for this condition. We also encourage you to trust your instincts. If you notice changes or have an intuitive feeling that something is not right with the person you are concerned about, act on that feeling and seek medical attention.

Only a medical doctor can make a diagnosis of hydrocephalus. The information here is intended to help you understand and navigate through the process of seeking medical advice. In children, it is often a pediatrician who first suspects hydrocephalus. A pediatric neurosurgeon will typically make the final diagnosis. In adults, hydrocephalus is often diagnosed by a neurologist working with a neurosurgeon.

If you have already received a diagnosis, the information below will help you make sense of theclassifications and causes of hydrocephalus.

Symptoms and Diagnostic Tests

Symptoms of untreated hydrocephalus are variable. During pregnancy, routine ultrasound can detect enlarged ventricles (spaces) within the baby’s brain. In children the symptoms tend to be related to high pressure and may include nausea, vomiting, headache and vision problems. In young and middle aged adults symptoms run the gamut of those seen in children and in older adults and most often include dizziness and vision problems. In older adults with NPH the symptoms are more likely to be loss of function in three main areas: walking, thinking and bladder control.

Infants and Children	Young & Middle Aged Adults	Older Adults (NPH)
Abnormal Head Enlargement	Difficulty Walking	Difficulty Walking
Tense, Bulging Fontanel	Cognitive Challenges	Cognitive Challenges
Prominent Scalp Veins	Urinary Urgency or Incontinence	Urinary Urgency or Incontinence
Skull bones may feel separated	Chronic Headaches
Vomiting, Sleepiness, Irritability
Headache, Nausea, Vomiting, Vision
Downward Deviation of Eyes

The most common initial diagnostic test to determine hydrocephalus at any age is an image of the brain (CT Scan or MRI) to identify the enlarged ventricles (spaces) within the brain that are typical of hydrocephalus. More tests are often performed in adults. The following links take you to detailed information about the signs, symptoms and diagnostic tests for hydrocephalus in various age groups.

Treatment of Hydrocephalus

While there is no known cure, there are two forms of surgical treatment currently used to manage hydrocephalus. In the last 50 years, there have been incremental advancements in the diagnosis and treatment of hydrocephalus, however, long term health outcomes for individuals with hydrocephalus remain unpredictable. Often repeated neurosurgical operations are necessary to treat hydrocephalus. And it is important to recognize when treatment is failing and to stay current with doctors and developments even when things are going well. Learn more about treatment complications and what to be alert for.

Shunt Systems

The most common treatment for hydrocephalus—and the most common procedure performed by pediatric neurosurgeons in the United States—is surgical implantation of a device called a shunt. A flexible tube and valve system, a shunt drains cerebrospinal fluid from the brain to another part of the body.

Shunt Operation Statistics

• About 40,000 shunt-related operations are performed every year in the US for hydrocephalus—that averages out to one every 13 minutes and over 100 every day.
• Shunt operations for hydrocephalus cost over $1 billion a year in the US.
• 50% of shunted individuals require a revising operation within two years.

Endoscopic Third Ventriculostomy (ETV)

A second treatment option is a surgical procedure called endoscopic third ventriculostomy (ETV). An endoscope is used to puncture a membrane in the floor of the third ventricle creating a pathway for CSF flow within the cavities in the brain. ETV is an important alternative to shunting for obstructive hydrocephalus and may be useful in other cases as well.

Unlike many other operations in which the risks are highest during the surgical procedure, most problems associated with shunting occur weeks or even years afterward. Shunt obstruction and malfunction occur in approximately one third of children in the first year after a shunt-related operation and studies have shown that ETVs can close up after time. We cannot overstate the importance of learning the signs and symptoms of treatment failure. Staying in close contact with neurosurgeons if you have a shunt or an ETV is critical.

Throat Spasm Relief...

My throat spasms have subsided and I am soooo HAPPY!  I was already going to see my primary care Doctor next week for my annual physical, so she will check out my throat then.   I will see her earlier if the spasms start up again.

Believe...

Obamacare Premiums Report Shows Low Prices For Uninsured With Wide Variation by Jeffrey Young jeffrey.young@huffingtonpost.com

The average price for basic health coverage purchased on health insurance exchanges created by President Barack Obama's health care reform law will be $249 a month, not counting subsidies, in 48 states reviewed by the Department of Health and Human Services, according to a government report published Wednesday.

The health insurance exchanges, marketplaces for uninsured people and consumers who don't get health benefits from their employers, are scheduled to launch on Oct. 1for an enrollment period that runs through the end of March for 2014 coverage. This latest analysis of what the health insurance plans will cost comes just six days before people will be able to find out what they'll actually pay.

"For millions of Americans, these new options will finally make health insurance work within their budget," Health and Human Services Secretary Kathleen Sebelius said during a conference call with reporters Tuesday. Reporters were provided access to the report prior to its publication.

The figures released by the Department of Health and Human Services represent averages and prices will vary widely by geographic location as well as family size, age, tobacco use and income. Even the average price of a so-called bronze plan, designed to cover 60 percent of medical expenses not counting monthly premiums, masks big variation. The average price of the cheapest bronze plan in Minnesota is $144 while in Wyoming, comparable coverage costs $425 on average, not including subsides.

For people who currently are uninsured and who qualify for financial assistance or enrollment in Medicaid, the federal-state health program for the poor, the average prices look to be low: 56 percent of uninsured will be able to get coverage for less than $100 a month per person, Gary Cohen, director of the Center for Consumer Information and Insurance Oversight, said during the conference call.

The report cited examples of families and individuals who could qualify for subsidized coverage that would greatly reduce its cost, and Cohen said some low-income people will even be able to obtain a bronze plan with no monthly premium because of the subsidies.

A 27-year-old in Dallas who earns $25,000 a year will be able to purchase a bronze plan for $74 a month, including federal tax credits to discount the price. A family of four in Dallas with a $50,000 household income could choose a bronze plan for as little as $26 a month, including the subsidies. A family of four earning $50,000 a year purchasing the least expensive bronze plan would pay $36 a month in Charlotte, N.C., $32 a month in St. Louis and $24 a month in Ft. Lauderdale, Fla., including subsidies.

Premiums for the cheapest silver plan on 36 state-based health insurance exchanges the federal government is at least partially managing are 16 percent lower than originally projected by the Congressional Budget Office, Cohen said.

Prices for some people who already buy their own insurance will rise above today's level, however, largely because the health care reform law doesn't allow insurance companies to exclude people with pre-existing conditions, guarantees a minimum benefits package, doesn't allow women to be charged more than men, and limits how much more older people must pay. The current market favors healthier people, but is more challenging for older and sicker people, who often can't find coverage.

Less than 4 percent of people who currently have health insurance are only covered by insurance they buy directly, as opposed to getting it through work or from a government program like Medicare. While some of these people will qualify for financial assistance, some will see higher sticker prices for coverage.

The Obama administration and the states cooperating with implementation of the health law, and some independent analysts, maintain that's why prices on today's individual market for health insurance can't accurately be compared with the cost of plans sold on the exchanges.

"There have been a lot of products on the market where people thought they had health insurance, but then they found out it didn't cover hospital visits, for example," Cohen said. Improved benefits and consumer protections in exchange plans make them more valuable, he said.

"People will have high-quality coverage that will cover essential health benefits, that will be there when they need it, and the rates they will have to pay for those plans are reasonable and good rates, particularly after the application of tax credits, when they are extremely reasonable," Cohen said.

The health care law provides tax credits on a sliding scale based on income. People earning from the federal poverty level, which is $11,490 for a single person this year, to four times that amount, or $45,960, may be eligible for financial assistance. The value of the tax credit is tied to the second-cheapest silver plan where a person lives. People who earn up to 250 percent of poverty can get extra help covering their out-of-pocket expenses. In about half the states, Medicaid benefits will be available to anyone who makes up to 133 percent of poverty, which is $15,282.

Health insurance sold on the exchanges is categorized by metal levels from bronze to silver to gold to platinum, denoting how generous their coverage is. Lower-end plans generally will have lower monthly premiums, but higher out-of-pocket costs, while higher end plans will have higher premiums and less out-of-pocket spending. People younger than 30 or who can't afford insurance even with subsidies can opt for high-deductible catastrophic plans that aren't eligible for tax credits. Nearly all legal U.S. residents are required to obtain health coverage or face a tax penalty under the law's individual mandate.

Farah Mohamed contributed to this report

My Throat Spasms

So I still have the spasm on my neck and throat from yesterday.  While my neck spasm is the norm the throat spasm is very, very new.    I just spoke with my neurosurgeon and they suggested that I go in to see my primary care doctor tomorrow then an Ear, Nose and Throat doctor (ENT) and possible imagining.
They can't even guess why this is happening.  Another night to get through....life does happen.

While not being negative but realistic I had prepared myself that just about anything can crop up with my illness.  The realities are still sobering and stressful though.

Meditation, breathing and getting out to enjoy the beautiful day helped today.

Just In Time...How To Stop Agonizing Over The Little Things (Because They're Inevitable)

Your back aches, your coffee's luke warm, or you fall behind schedule.

There are myriad things that can and will go wrong every single day of your life. (And hey -- there's also plenty that goes right, so keep track of that, too.)

Many of us allow one sour moment to spoil what would have otherwise been a perfectly sweet day. But it doesn't have to be this way. There are simple -- really simple -- ways to keep your stress in check and stop agonizing over the inevitable.

"We're living in a society where we think the answers have to be really complicated," says Kathy Gruver, Ph.D., author of "Conquer Your Stress With Mind/Body Techniques." "We tend to complicate our own lives, but things can be ridiculously simple -- and still work." The next time there's a bump in the road, remember a few of the mental tricks below to help yourself smoothly redirect back on course.

Just. Stop. Thinking. About. It.
Certain pain, like an aching back, feels impossible to ignore. But agonizing over what hurts won't help you to feel any better. Instead, you're just suffering twice (once in your head, once in your back). "You have the choice to think about something else," says Gruver, which is a somewhat shockingly simple truth. Just. Stop.

Focus on the breath.
"Breathing is so cool because it happens automatically and it's something we can control," Gruver says. Breath concentration works anywhere and it gives you something positive to focus on. Gruver suggests thinking "I am," on your inhale and "at peace" on your exhale. This technique it powerful: It overrides negative thoughts and redirects your focus. "It's hard to stop thinking things, but it's easy to replace those thoughts with something else."

Don't beat yourself up if stress-inducing thoughts creep their way in (what will I make for dinner?). It's normal and natural for this to happen, but judging yourself for it sort of defeats the purpose of the practice. Gruver says to dismiss these thoughts without judging yourself for having them, and carry on.

Visualize something that doesn't make you anxious.
"Visualization gives you control and can help decrease your pain." Visualize anything from your favorite vacation spot when you're feeling on edge to your body actually healing itself when you're experiencing physical pain. "The more real you can make it, the more it's going to work." The doctor herself visualizes a "little construction worker" moving around her body, working to mend and heal her whenever she feels achy or sick.

Use cues to remind you to be mindful.
"Mindfulness isn’t about setting time aside and sitting on the pillow for meditation," says the practitioner. "Mindfulness is about making your everyday activity a meditation." There are times when the practice of being mindful seems to slip our minds, and we get caught up in the heat of the moment. In these cases, it can be helpful to use "mindful cues" to bring us back to center. Whether it's an alarm on your phone, an app that reminds you to breathe or even the laugh of your colleague that you choose to associate with being present, setting these little reminders will prevent the chaos of the day from becoming too much to bear.

Rely on a someone you trust.
When you want to start making changes, ask a confidant to be a gentle reminder. If you want to stop complaining about your boss, mention it to someone you're close to. He's more likely to catch -- and stop -- you in the act. It's a system that'll keep you in check when you react to a stressful situation rather than respond to it.

From; Hoffington Post GPS For the Soul

Syringomyelia (sear-IN-go-my-EEL-ya)

Syringomyelia, often referred to as SM, is a chronic disorder involving the spinal cord. The 

condition occurs when cerebrospinal fluid (normally found outside of the spinal cord and
brain) 

enters the interior of the spinal cord, forming a cavity known as a syrinx.

This syrinx often expands and elongates over time, destroying the center of the spinal cord. 

As the nerve fibers inside the spinal cord are damaged, a wide variety of symptoms
can occur, depending upon the size and location of the syrinx.

There are two major types of SM. In most cases it is related to a congenital malformation 

involving the hindbrain (cerebellum) called aChiari I malformation. This malformation occurs 

during fetal development and is characterized by downward displacement of the lower part

of the brain (cerebellar tonsils) beneath the foramen magnum, into the cervical spinal canal. 

This displacement blocks the normal flow of cerebrospinal fluid. When normal flow is 

obstructed, a syrinx can form in the spinal cord. Not all patients with Chiari malformations 

will develop a syrinx, however.

SM can also occur as a complication of trauma, meningitis, tumor, arachnoiditis, or a

tethered spinal cord. In these cases the syrinx forms in the section of the spinal cord 

damaged by these conditions. As more people are surviving spinal cord injuries, more 

cases of post-traumatic SM are being diagnosed as the syrinx can form years after the
trauma.

Symptoms

Symptoms develop slowly over time, but can come on suddenly after a fall or minor
trauma. 

Sensation may be affected first. Some common symptoms include:

• Loss of sensitivity to hot and cold
• Numbness and tingling
• Bowel and bladder function may be affected
• Scoliosis
• Pain
• Muscle weakness
• Spasticity
• Paralysis (in severe cases, quadriplegia)

Scoliosis may be the only symptom in children. Often people with scoliosis undergo spinal 

MR imaging because of an atypical left-sided thoracic curve.

Many individuals suffer from chronic pain and some will develop neuropathic pain syndromes. 

This type of pain is difficult to treat. A large percentage of people have headaches which 

can be severe.

Treatment

The first step after diagnosis is finding a neurosurgeon who is experienced in the treatment 

f SM. Finding a specialist is highly recommended. Surgery is the only viable treatment for SM, 

but not all patients will advance to the stage where surgery is needed. Evaluation of the 

condition is often difficult because SM can remain stationary for long periods of time, and in 

some cases progress rapidly.

Treatment is aimed at restoring the normal flow of spinal fluid. In persons with Chiari and SM,

 a procedure known as a posterior fossa decompression may be recommended. This

 procedure allows the cerebellar tonsils to move into a normal position, restoring the

 normal flow. After this procedure the syrinx will often reduce or resolve on its own. This 

can take months and may never completely collapse the syrinx. Some patients may require

 repeat surgeries. The most important consideration in deciding to undergo surgery is the

 severity of symptoms and overall quality of life issues.

In syrinxes associated with other causes, the surgical treatment is also aimed at restoring 

normal physiology and flow of spinal fluid. This might involve a bony spinal decompression,

 removing a tumor or scar tissue. In cases of tethered spinal cord, a surgical procedure is 

used to release the tension on the cord, allowing it to return to its normal position.

In rare cases, a shunting procedure may be necessary.  This involves inserting a tiny tube

into the syrinx which drains to a cavity outside of the spinal column. Shunting procedures are

associated with certain risks and shunts frequently become clogged or dislodged. Repeated 

surgeries may be necessary.

One Crazy Evening

It's one of those crazy evenings, my throat suddenly started to spasm.  I have had spasms on my neck, shoulder, arms, legs quite often but can't recall having it on my throat.
Usually I would be scared out of my wits but although  I was a bit apprehensive I decided to stay calm.  I drank tea and took muscle relaxant but nothing helped.  So here I am at midnight, a bit scared to go to sleep and yet very tired. 

My life since 2008 has been a roller coaster.  I try not to think what will happen to me from one minute to the next.  Literally things can change that fast!
I find that the more stress I have the worse my symptoms and new ones just appear.  Staying stress free is easier said than done. Can't control other people and the crazy ideas that they toss at you unexpectedly.   

I find that my BEST days even with lots of pain are the ones that are stress free.

So it's morning and I survived ( I thought the spasms would cut off my breathing while I slept and I would die).    I still have ongoing spasm on my neck and throat and writing this helps to distract me from the discomfort.  It is a super weird feeling. 
I am going to call my neurologist later this morning to see what my next step should be.

In the meantime I have decided to try more deep breathing and meditation to help cope with my stress and my illness.  
Stay tuned...

Chiari Malformation

The Chiari malformation is an abnormality in the lower part of the brain called the cerebellum.
There are several different forms. The most common type is the Chiari I malformation (CM)
which this article addresses. Less commonly, it may be known as Arnold-Chiari
malformation,
 tonsillar herniation or tonsillar ectopia. Most cases of Chiari are congenital, meaning they are
 present from birth.

In normal anatomy, the cerebellar tonsils are located just above this line called the
foramen magnum. But in an individual with Chiari, the tonsils hang below the line (herniate)
into the spinal canal. The degree to which the tonsils extend can vary tremendously.

Symptoms

The most common symptom of Chiari malformation is a headache, which begins at the
back of the head (neck) and radiates upward. The pain is often made worse or can be
brought on by coughing, sneezing or straining. These activities are known as valsalva
maneuvers.

Visual problems such as nystagmus (involuntary eye movements), double or blurred vision
may occur. Balance difficulties, vertigo and dizziness also may be present. Some people
may have cranial nerve compression. This can result in apnea (cessation of breathing),
gagging, swallowing difficulties, facial numbness or syncope (temporary loss of
consciousness).

Patients may have muscle weakness, particularly in the upper extremities, coordination
problems, and gait abnormalities. Imaging of the spine may reveal a fluid collection
inside of the spinal cord, known as a syrinx. Some individuals may have hydrocephalus,
a buildup of fluid in the ventricles of the brain.

Treatment

The first step after diagnosis is to consult with a neurosurgeon who has experience
treating and managing this disorder. Be aware that you may need to travel and you
may wish to consult with more than one specialist.

If symptoms are mild and not progressing, your doctor may recommend conservative
management. Supportive care such as headache and pain management, physical
therapy or a reduction in activities can help manage symptoms.

An operation may be recommended. This is referred to as a posterior fossa decompression.
The surgeon makes more room in the back of the head by removing small pieces of the skull
bones. This reduces compression of the brain stem and allows the tonsils to move
back into their natural position. The specific surgical techniques will vary among
surgeons; no consensus yet exists on the best variation on this surgical procedure.

Is This Condition Hereditary?

Researchers investigated the genetic implications of the Chiari malformation with or
without syringomyelia. A genetic prevalence has been identified in some families.
Researchers continue to search for the gene(s) that are responsible for producing the
Chiari malformation.

MRI scanning is recommended for family members who have signs or symptoms of the
disorder.

Affordable Health Insurance starting next Tuesday, October 1, 2013..... Pre-Existing Conditions are covered too!

How many people have Chiari 1

In an article posted on Neurology Now it says that an article published in the New England Journal of Medicine in 2007 reported that an estimated 3 million people in the US have Chiari. I would say there must be a lot of people going undiagnosed.

Anyone can get Hydrocephalus...spread the word, promote awareness

Stem Cells Created In Living Mouse, Suggesting New Possibilities In Regenerative Medicine

By Kate Kelland

LONDON (Reuters) - Scientists have succeeded in generating new stem cells in living mice and say their success opens up possibilities for the regeneration of damaged tissue in people with conditions ranging from heart failure to spinal cord injury.

The researchers used the same "recipe" of growth-boosting ingredients normally used for making stem cells in a petri dish, but introduced them instead into living laboratory mice and found they were able to create so-called reprogrammed induced pluripotent stem cells (iPS cells).

"This opens up new possibilities in regenerative medicine," said Manuel Serrano, who led the study at the Spanish National Cancer Research Centre in Madrid.

Stem cell experts who were not directly involved in the study said its success was exciting, but noted that the technique as it stands could not be used in humans since the reprogrammed cells also lead to tumors forming in the mice.

"Clearly nobody wishes to do this for therapeutic purposes because this leads to the formation of tumors called teratomas," said Ilaria Bellantuono, a reader in Stem Cell and Skeletal Ageing at Britain's University of Sheffield.

But she added that Serrano's work was a "a proof of concept" that opened up the opportunity to investigate ways to partially reprogram cells in the body up to a certain stage.

"In principle, these partially dedifferentiated cells could then be induced to differentiate to the cell type of choice inducing regeneration in vivo without the need of transplantation," she said.

Stem cells are the body's master cells and are able to differentiate into all other types of cells. Scientists say that by helping to regenerate tissue, they could offer new ways of treating diseases for which there are currently no treatments - including heart disease, Parkinson's and stroke.

There are two main types of stem cells - embryonic stem cells, harvested from embryos, and adult or iPS cells, cells taken from skin or blood and reprogrammed back into stem cells.

Serrano, who spoke to reporters in a briefing ahead of his study's publication in the journal Nature on Wednesday, said one of his most striking findings was that the iPS cells generated in the living mice seem to be more similar to embryonic stem cells than to iPS cells created in petri dishes.

Specifically, he said, the iPS cells reprogrammed in living mice showed the potential to differentiate into more cell types than standard iPS cells or embryonic stem cells - suggesting that reprogramming cells in a living mammal produces cells with greater potential, or what scientists call more plasticity.

Chris Mason, a professor of regenerative medicine at University College London, said he had no doubt that being able to reprogram cells in the body to different cell types would be useful in producing future therapies capable of transforming patients' lives, but said there were many more years of research ahead before that would be possible.

"The cells that will be useful will not be the pluripotent stem cells (iPS cells), but their more specialized ('adult') offspring," he said.

"This.. is an interesting proof of concept of the first step in the process, but it still needs these iPS cells to be safely converted to useful 'adult' cell types in the body."

He said the major challenge in this potential approach to treating patients in the future would be tightly controlling every step of the process to make sure it delivered benefits while also avoiding complications.

(Reporting by Kate Kelland, editing by Ralph Boulton)

Background to My Journey...

Background
I have been putting off writing this background post for several months, until I read a post from a 31 year old on the Chiari Facebook support group who said he was told by doctors he had 10 to 14 year left. THAT was very sobering to me…I never thought of asking because I didn't want to know, yet I knew the rest of my time was limited. If I wanted to tell my story then I could not put it off any longer…it’s hard, it’s painful but I simply can’t put it off any longer.


I worked at a not-for-profit in NYC for over 20 years. I was very successful and increased an annual budget of under $500,000 to over $20,000,000.


I met Steve in the summer of 2002 and we were married in the fall of 2004. I became a step-mom to a wonderful, good nature six year old boy. In 2006 I was pregnant with our first child and 4 months into the pregnancy I had a miscarriage.


I can’t say for sure when I started having weird, unexplained symptoms but after a second miscarriage (at 5 months) in January 2008 I noticed that I had difficulty lifting my right arm above my head. I would feel deathly ill but couldn't pinpoint why. I saw chiropractors and finally a physical therapist (PT). I saw the PT for a few months without any success. I also had 'mind boggling' pain on my right shoulder and my neck.
My PT even did acupuncture and it didn't help one bit. She finally sat me down and said the pain and weakness does not add-up in relation to my age and she penned a note to my doctor to request that he order an MRI of my brain; Which he did.


My doctor refused to tell me the findings of the MRI over the phone in August of 2008. When I went in to see the doctor she had a print-out from Google for me and commenced to explain Chiari Malformation.
It was great to finally know what was wrong with me but it was terrifying to enter this unknown. I really could not believe this was actually happening to me!!!
My doctor recommended a neurosurgeon in NYC and we went to see him. He told me my options as he saw them. I would need at least two brain surgeries.


Most people go through their entire lives without major symptoms...but I wasn't one of those people. Chiari is hard to diagnose because symptoms mimic regular day to day illnesses such as headache, migraine, allergies.


Most of my immediate family live in Maryland and my sister suggested that I call and send my MRI report to the world famous Johns Hopkins Hospital in Baltimore, Maryland. Hopkins told me they do not normally respond before 3 - 6 weeks. I sent the report on a Friday and by Monday I got a call that I should come in to see them asap. I thought …oh no!! I must be dying??!!


Based on the MRI report the doctors couldn't believe I was still standing and moving around!
Needless to say I went through tons of tests and evaluation. I was told that I was one of the worse case they had seen. I had lost 80% of the nerve function in my right arm and 50% in the left.


Surgery was scheduled for September 23, 2008. In one year I had to deal with a miscarriage and a brain surgery. The decompression surgery would last about 7 -8 hours and I would be woken during the surgery. Luckily I don't remember it! My doctor was Dr. Judy Huang and she was the best! I had total confidence in her and believe me that helps a lot.


A day or two before my surgery I had news that a huge contract I worked on for my agency was approved and that means I would now head the largest agency of it’s kind in NYC! That was awesome news! But I still thought why couldn't this have happened when I was well??!! Why am I sick NOW!!!


During my ore-op MRI the technician told me that they thought the machine had broken because they had never seen so much fluid on the brain/spine before mine. That was “comforting” to hear only days before surgery.

I tried to keep a positive attitude but it was increasingly hard. My husband is very supportive, but no one could quite still the fear I had.
The night before surgery, I barely slept and was up at 4 or 5 am for the trip to the hospital.


When I woke up in ICU the first thing I thought was: “I made it!”
The next night I watched with my husband the first Presidential debate with Obama and McCain from my hospital bed. I love politics and had even thought I would run for elected office someday.
The Presidential election and SNL coverage of it was a great source of distraction as I recovered during the fall of 2008.



I had to stay close to the hospital for up to 6 - 8 weeks just in case there were complications.
At home I had to be taken to and from the bathroom and I couldn't find comfort in a bed and slept in a reclining chair. I had to be helped in the shower and with everything I did.
My husband kept up with my meds at night, my brother took care of my breakfast. To give my husband a few hours break in the day we had a nurse. She helped me with personal care, showers, meals etc.
Less than a week after surgery I was sent to have PT. Mainly so that today I have some mobility on my neck. Back then I thought it was “cruel and unusual punishment”


One day I thought I was strong and could do more so I went to the park with my husband and we walked a bit. I remember hearing a brook and the sound of the water was so calming, I wanted to see it. My husband cautioned me that I had to remember that I had to walk back too…I was determined and pressed on…On the way back I was so exhausted and sleepy I barely remember getting back and into bed. I slept for over 4 hours!!


I went back to work briefly in December 2008 – Board meeting and meetings for the newly won contract which was slated to begin February 2009.
I officially went back to work in January 2009. I was still very weak, but it was a good distraction – I was in the office several times per month and attended all meeting and worked from home other times.


I had to go in to Hopkins every 3 months for MRI and soon it was time to discuss my next surgery – To relieve the pressure on my brain caused by excessive fluids OR to fix the discs on my spine. The spine doctor at Hopkins called me and told me that he didn't think the pain I was still experiencing on my neck and shoulder was due to the spinal issues but that he believed I should consult with neurosurgeon Dr. Daniele Rigamonti about the fluid on my brain - Hydrocephalus.


Dr Rigamonti wanted to discuss my case with others at Hopkins to determine the best method for me – opening the ventricles OR the dreaded shunt). After what seems like an eternity (about 3 -4 weeks) the doctor called to say that he had decided on opening the ventricles. Surgery was set for August 6, 2009 ( less than a year after my first surgery).


Although I had every confidence in Dr Rigamonti I was not confident that I was strong enough to survive another brain surgery and that worried me a lot!


After 3+ hours of surgery I was awake in ICU and I actually felt good. It took me a while to realize that the horrible 24x7 pain I had in my neck wasn't there….then I was afraid to acknowledge it to anyone for fear that it would come back.


Today, I still have intense pain 24x7 on my back, shoulders, right side of my body and new pain on my left side (2012), the neck pain only comes on periodically and that is a huge relief!
I cope better today because most of the nuisances are more familiar to me. I still become frustrated when my mind says “I can” but my body doesn't cooperate.


A few weeks ago my husband and I went to the cemetery with flowers and we were able to talk about how old the girls would be and what they would be like. I am able to now talk about them without getting too emotional.

So, follow me on this Journey of mine...

The Shunt

The Battle..

...Be Kind...

Added by: Hydrocephalus Association