Painful Condition Mimics Migraines

Painful Condition Mimics Migraines

Hello Everyone!

There was a news story about Chiari here in Pennsylvania, I wanted to share with you all!


News Story

Also, today I have been with my wonderful husband for NINE YEARS! He has been such a wonderful support system going through all of my Chiari trials. He never left my side in the hospital. He even slept in one of those uncomfortable hospital chairs! I love him so much and I wouldn’t be here today to write this if he wouldn’t have supported me, loved me, and pushed me to never take no for an answer.


Love you Hubband!!



Ryan’s Voice for Chiari Patient Safety

Ryan’s Voice for Chiari Patient Safety

Hi all.

I came across a heart breaking post on Facebook today, and I wanted to share it with you. When people say, “You don’t look sick”  I hope they keep this young man and his family in their mind.
Ryan’s Voice

“First let me tell you a little about my son Ryan. He was a wonderful kid with many hopes and dreams for the future. At 19 years old he started having severe headaches. He had never had chiari symptoms or even been sick before. Healthy and active we assumed he was spending too much time in front of the computer and maybe that was the reason for the headaches.

Then on May 12th 2013 ( mothers day) he woke up with what he described as the worst headache of his life. Later that day he vomited and passed out on the bathroom floor. We rushed him to our local University hospital and they diagnosed him with Chiari 1 and hydrocephalus. We were so scared. I knew nothing about Chiari and was horrified. They performed a Laminectomy and placed a vp shunt to drain his spinal fluid.

12 hours after surgery he went into cardiac arrest and had to be vented. Then he developed clots in his shunt. He was in ICU for 3 weeks. Finally he was well enough to go home. We thought the worst was over but it was just the beginning of this nightmare. Once home he began vomiting every time he tried to eat. The doctors told us it was nothing. That we were just worrying too much. They gave him Phenegren but it didn’t work. He just continued to vomit and get weaker.

Then in June he had his first seizure. We took him to the hospital ER 7 times in 6 weeks. He started having seizures everyday but the doctors insisted they were not seizures! In fact they kept telling us there was nothing wrong with Ryan, and that the surgery had been successful. When Ryan’s appointment came around in July they told us they didn’t take his insurance! I soon realized they were trying to cover something up.

The neurosurgeon was young and inexperienced in Chiari. She just used my son for practice. Ryan continued to get worse and we continued to beg the doctor and hospital for help. They got very annoyed every time we brought Ryan into the ER. We were desperate for help because by July, my son could no longer walk without having a seizure. He was defecating on himself, he had lost 30+ pounds and he had episodes of Decordicate Posturing..a sign of brain stem damage.

On August 29th after the neurosurgeon refused to see him claiming an insurance problem, we took him back to the ER. He was finger tapping and gritting his teeth constantly. He was having several seizures a day and started reverting back to childhood. He didn’t want me away from his side and was calling me mommy instead of mom.

In extreme pain, my son lay in the ER with me and his dad by his side for 12 hours. I begged them to do an mri and they refused. They told us, ”your son has no brain damage, he is just depressed. We will no longer treat him from a neurological standpoint.”

My husband and I were mortified! We knew if we didn’t get him out of there they would commit him to the psych ward! Ryan told me, “Mom, I’m dying. They don’t believe me.”

My husband snapped and went home and tried to kill himself. He had a complete mental breakdown.

I took Ryan out of there and straight to another hospital.

That is where my son died.

It was too late. His brain stem had collapsed, crushing his spinal column and rendered him brain dead. I was by his side when it happened.

I do have a lawsuit against the doctors and hospital who destroyed our lives and murdered my son.”

Ryan’s Voice, Facebook.


My heart breaks for this family. They have a Go Fund Me page to help cover the expenses of their great and unexpected loss. I hope this family’s story is able to reach others who aren’t or don’t take Chiari seriously. Please check out his mom’s blog Life on the waiting list

Pennsylvania Senate Chiari Resolution

Pennsylvania Senate Chiari Resolution

Hello Everyone!

Last year, my husband worked closely with now retired Senator Brubaker to get a resolution passed in Pennsylvania to recognize September as Chiari Awareness Month. This year, Senator Aument and his staff have been kind enough to introduce our resolution into the Senate. Please take some time to visit Senator Aument’s Facebook page to thank him and his staff for the work they are doing to help us spread awareness.

Stay positive!



Here is the text of last years resolution.


No. 456 Session of 2014

SEPTEMBER 24, 2014

Designating the month of September 2014 as “Chiari Malformations Awareness Month” in Pennsylvania.

WHEREAS, Chiari malformations (CMs) are structural defects in
the cerebellum which affect nearly 500,000 Americans; and

WHEREAS, CMs cause the cerebellum to descend out of the skull
and herniate into the spinal column, putting pressure on both
the brain and spine and blocking the flow of cerebrospinal
fluid; and

WHEREAS, CMs can cause a wide range of symptoms, including
severe and persistent headaches, loss of motor functions,
extreme pain in the neck and shoulders, nerve damage, balance
problems, weakness and numbness in the hands and feet, sleep
apnea, trouble swallowing and other serious health problems; and

WHEREAS, There is no known cure for CMs, and many patients
must undergo extensive surgical procedures to ease the pressure
and slow the progression of symptoms; and

WHEREAS, The severity of symptoms can vary dramatically from
person to person, regardless of the amount of descent or
herniation of the cerebellum; and

WHEREAS, The disease is frequently misdiagnosed and
misunderstood and the cause and risk factors of the condition
are not fully understood; and

WHEREAS, Additional research, awareness and understanding of
this condition are vital to ensure the best possible outcome for
patients; therefore be it

RESOLVED, That the Senate designate the month of September
2014 as “Chiari Malformations Awareness Month” in Pennsylvania
and recognize the importance of understanding the impact of this


Fact sheets for Docs-on-the-go

Fact sheets for Docs-on-the-go

Hi all

This is a fact sheet endorsed by my surgeon, Dr. Paolo Bolognese. It is a great help if you want to print off and take to your next doctors appointment!

Fact sheets for Docs-on-the-go:

Chiari-1 Malformation©2005 SJ Rodgers, Educational Therapist, and Danny Whitehead, M.D.
Endorsed by Paolo Bolognese, M.D. Director of Chiari Neurosurgical Center at Neurological Surgery, P.C.

You know how to recognize multiple sclerosis (MS) – you probably have several cases in your busy practice.You also expect to add one or two new cases every year, because you know that 400,000 Americans have MS, and that another 200 are diagnosed every week:

1. MS is rare, but not uncommon, so it doesn’t surprise you.

2. Did you know that similar numbers apply to Chiari-1 Malformation? How many Chiarians have you identified in your practice? Most cases of Chiari are left undiagnosed, or worse, misdiagnosed as multiple sclerosis, migraine, fibromyalgia, or psychiatric disturbances, a common error that prevents physically ill Chiari patients from getting the kind of help they need and deserve.

Let’s take a closer look.

Chiari-1 Malformation is properly defined as a mesodermal anomaly, a deformity of the posterior cranial fossa boundaries, most notably the occipital bone, but also the tentorium, clivus, basion and opisthion.The deformity subtly compresses the cerebellum and often the occipital lobe, brainstem, and/or spinal cord, too. The cerebellar tonsils herniate into the foramen magnum and may occupy a small portion of the upper cervical spinal canal .

They are visible on mid-sagittal and slighty parasagittal MRIs . However, in some cases, the tonsils wrap around the brainstem or curl up like tiny snails; then their appearance is more subtle, but their effect is just as debilitating .The reason for symptom and sign manifestation – and an important key to the severity of a case – is the deformity’s effect on cerebrospinal fluid (CSF) dynamics.

When CSF flow is turbulent, reduced, or absent in one or more locations, adjacent brain tissue receives little nutritional support, cellular by product removal, or cushioning from the effects of mechanical or Valsalva maneuvers. Brain function in the affected areas is disturbed. Naturally, patients report debilitating effects that correspond to the malfunction of the affected brain parts.

Symptoms and signs can number into the dozens, can appear to exist in unrelated systems, and can wax and wane as influential factors change.

How can you identify your Chiarians? (Yes, you do have some.) The easiest way to identify Chiarians is by cataloging their complaints in categories corresponding to brain anatomy:

1. Listen for details indicating cerebellar, occipital lobe and brain stem malfunction, then add upper spinal cord symptoms, and the malfunction of midline structures such as the hypothalamus, amygdala, and pituitary gland.

You’ll see a pattern that is unique to the patient’s anatomy; it matches the territory of the malformation and reflects defects in the patterns of cerebrospinal fluid flow. Order MRI scans to verify your clinical observations.

MRI of the brain will show subtle structural defects in addition to any obvious tonsillar herniation. An MRI of the entire spine will rule out or confirm a syrinx; this fluid-filled cavity often accompanies Chiari and can be found anywhere in the spinal cord. A Cine MRI of the cranio-cervical junction will outline CSF flow dynamics. Watch for diminished or absent flow, especially in the retro cerebellar spaces, and from the fourth ventricle between the brainstem and cerebellum. Hydrocephalus is not necessary for the diagnosis of Chiari.
Keep in mind that subtle deformities within the posterior fossa, with or without frank herniation, can be more problematic in their effect on brain function than a large but simple ectopia that happens to leave room for normal fluid flow. This explains why short, thick cerebellar tonsils that barely plug the foramen magnum can cause a serious impediment, while a longer herniation that is thin or peg-shaped sometimes can cause few problems.

Ok, so you realize you have a few Chiarians. Now what? Take good care of them. Typically they have been suffering for a long time, with no name for their assailant. Explain Chiari to your patients, and reassure them that they are not psychologically ill, that their compressed brain tissue and altered fluid dynamics do have measurable effects on their physical function. Encourage them to learn more .

Work as a team to decide which of several courses you’ll follow:

In cases with mild symptoms, encourage your patients to keep you informed of any changes, follow good health habits, and avoid physical activities that promote whiplash, such as trampolines, roller coasters, and contact sports.

In cases with moderate symptoms, also consider trying a biochemical treatment such as Diamoxto reduce fluid production if indicated, or suggest a mechanical treatment such as cervical traction to increase space in the cranio-cervical junction.

In cases with moderate to severe symptoms, do all of the above and encourage your patients to consult with a neurosurgeon who is very experienced with Chiari cases. Surgery for this debilitating malformation is a delicate art form; it requires a resculpting of the retrocerebellar spaces to create the missing cisterna magna and to redirect cerebrospinal fluid and establish proper flow dynamics in multiple planes.

Two more points to consider:
1: Instruct your patients to report immediately any of the red-flag warning signs of severe brainstem compression: breathing difficulties, swallowing/choking problems, wild heart rate fluctuations, and/or drop attacks.  When they call you, take action. Brainstem compression from Chiari can develop at a variable pace, and it has been known to KILL.

2: Familiarize yourself with the subtleties of this rare-but-common disease.

Check out the following internet resources for accurate, up-to-date information:

Chiari Institute

conquer chiari



National MS Society

“Approximately 400,000 Americans acknowledge having MS, and every week about 200 people are diagnosed. Worldwide, MS may affect 2.5 million individuals. “Until recent years, CM1 was regarded as a rare condition. With the increased availability of magnetic resonance imaging, the number of reported cases has risen sharply. Current estimates range from 200,000 to 2 million Americans with the condition. Genetic studies spearheaded by Dr. Milhorat support a hereditary tendency with a transmissibility rate of 12 percent. Women are affected three times more often than men. Approximately 3,500 Chiari operations are performed each year in the United States. ”

http://www/. conquerchiari. org/FAQ. htm

“Estimates for the number of people with true Chiari range as high as 500,000 in the United States .A more conservative estimate of 300,000 would mean that 1 in 1,000 people have Chiari, or 0.1% of the population. ”

Milhorat TH, Chou MW, Trinidad EM, Kula RW, Mandell M, Wolpert C, Speer, MC. Neurosurgery.1999May;44(5):1005-17. Chiari I malformation redefined: clinical and radiographic findings for 364 symptomatic patients.

ML, Nimjee SM, Floyd J, Bulsara KR, George TM Neurosurgery.2005 Apr; 56(4):716-21 “Correlation of cerebrospinal fluid flow dynamics and headache in Chiari I malformation.“Regardless of the degree of tonsillarectopia, occipital headaches were strongly associated with hindbrain CSF flow abnormalities.”

Quigley MF, Iskandar B, Quigley ME, Nicosia M, Haughton V. Radiology. 2004 Jul;232(1):229-36.Epub2004 May 20. “Cerebrospinal fluid flow in foramen magnum: temporal and spatial patterns at MR imaging in volunteers and in patients with Chiari I malformation.“CSF flow in symptomatic patients with Chiari I malformation , unlike that in volunteer subjects, is characterized by flow jets, regions with a preponderance of flow in one direction,and synchronous bidirectional flow.”

Chiari Institute “The majority of patients complain of severe headache and neck pain .Other common symptoms are dizziness, vertigo, disequilibrium, visual disturbances, ringing in the ears, difficulty swallowing, palpitations, sleep apnea, muscle weakness, impaired fine motor skills, chronic fatigue and painful tingling of the hands and feet .Because of this complex symptomatology, patients with CM1 are frequently misdiagnosed. ”

ASAP “Headaches are often accentuated by coughing, sneezing or straining. Patients may complain of dizziness, vertigo, disequilibrium, and muscle weakness or balance problems. Often fine motor skills and hand coordination will be affected. Vision problems can also occur. Some patients experience blurred or double vision, difficulty in tracking objects or a hypersensitivity to bright lights. Physical examination may reveal nystagmus (involuntary eye movements).Other symptoms include tinnitus (buzzing or ringing in the ear),hearing loss or vocal cord paralysis .Patients may have difficulty swallowing, frequent gagging and choking and, in some cases, sleep apnea may be present .”

ASAP “The most frequent symptom groupings include: headache,pain at base of skull/upper neck, progressive scoliosis (curvature of the spine); cerebellar dysfunction (difficulty with balance, coordination, dysequilbrium, low muscle tone); compression of the lower brainstem to cause alteration of voice, frequent respiratory tract infections, coughing when swallowing foods and fluids, compression of the spinal cord or distention due to accumulating fluid (hydromyelia); suspended alteration of sensation (e.g., arms are effected but legs not); central cord disturbance (injury to central part of spinal cord with resultant weakness greater in arms than legs); spasticity (abnormally high muscle tone or tightness, especially with movement of the muscle). Combinations of these syndromes occur commonly.”

Milhorat TH, Chou MW, Trinidad EM, Kula RW, Mandell M, Wolpert C, Speer, MC. Neurosurgery.1999May;44(5):1005-17. Chiari I malformation redefined: clinical and radiographic findings for 364 symptomatic patients.

Nicole Gaudette’s Chiari Story

Nicole Gaudette’s Chiari Story

Nicole G. Post surgery

Hello all!

I would like to introduce our first featured Chiari story. It comes from a lovely lady named Nicole Gaudette. She has been kind enough to allow me to share her story with all of you in hopes that it can help someone else on their Chiari Journey.

As always, stay positive!

*Update on Nichole. She recently underwent decompression surgery in Mass. on September 11, 2015. She is recovering at home.

Hi my name is Nicole Gaudette. I am 44 years old and the proud mother of 3. In September 2011, I was diagnosed with Chiari. I had never heard of this condition until I had an MRI.

I first started having my migraines when I was 16. I fell at home from a dizzy spell. I tried to get up but couldn’t because my legs hurt and were numb. I was rushed to the hospital and was given a Myelography. (That is when a spinal catheter is used to put dye into the spine and a special X-ray is taken. Spinal fluid was also drawn.)

During the procedure, something went wrong. From that point on I continued to have migraines. I had several MRIs after that to find the cause of the migraines while I continued to suffer.

Over the years I continued to have migraines. My doctor would give me Demerol shots for the pain and then prescribe me Imitrex shots for the migraines. The shots made my head burn, but it was the only relief that even touched my migraines. My life was never the same.

In 1997 I had my daughter then my son in 1999. My pregnancy previous to these was via C-section. Delivery was tough. I had awful head pressure with both, but I thought it was just my usual migraines.

The summer of 1999 my family and I went to an amusement park. While there, I was on a ride where the walls spin, floor drops and you are stuck to the wall from the force of gravity. I became very ill. I couldn’t breath, my head hurt beyond words, and I thought I was going to die.

When I got off of the ride, my legs felt wobbly, I was weak all over. From this point things went down hill. I began to have migraines and pressure headaches more often. My legs, arms would go numb for no reason.

In 2009 I became a self-catheter patient due to urine retention. I also have problems with bowel movements. December 21, 2012 I had a single level c5/c6 fusion. After my diagnosis in September 2011, many doctors said Chiari was no big deal, and that it could not be the cause of all my problems.

Because of Chiari, I have lost some hearing in my left ear, my vision is blurry, I’m weak all over, and tired all the time. I have tried to work a regular job, but due to my condition, I haven’t been able to work since June 2011. I was approved for Social Security Disability after 4 years of fighting. Social Security doesn’t recognize Chiari Malformation as one of its “Disabling Diseases”.

In June 2015, I was finally given the go ahead to have decompression surgery. September 10, 2015 is the big day. Almost exactly 4 years after being diagnosed with Chiari Malformation.

I hope sharing my story will be able to help others struggling with Chiari and remind them to keep fighting, and don’t take “no” for an answer.

Keep Fighting,


Thank you for sharing Nichole!