evergreenmom
04-07-2010, 12:23 AM
I came across this yesterday...thought it was a pretty thorough discussion of possible symptoms for anyone interested in Chiari malformation/ hindbrain herniation/ tonsillar ectopia.
We have been lucky so far that Xander has a diagnosis so we can monitor him as he grows. It is very important to know that you have a chiari and to keep an eye on it as neural problems can occur if it goes unchecked. So far he seems to be without symptom as many young children are. I spent some time reading a support forum of chiari sufferers and it seems many of them never knew they had a chiari until they were 30 or 40 and suddenly started having symptoms- some of them pretty life altering. For now all I can do is educate myself and others regarding this disturbing possible secondary diagnosis of cranio and hope Xander never does have any issues with his 5mm herniation.
Chiari Research Info for doctors
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A study published in the March, 2004 issue of the Journal of the American Academy of Nurse Practitioners has verified what Chiari patients have known for years; namely, that while some symptoms are common to many Chiari sufferers, the malformation also causes an array of symptoms which can vary widely from person to person. Indeed, one of the more common email questions this publication receives is asking whether X, Y, and Z symptoms are related to Chiari.
This plethora of Chiari related symptoms is not only a source of frustration for patients, but it is also a contributing factor to the all too often missed and delayed diagnoses that many patients endure. Both statistical and anecdotal evidence show that many patients go through doctor after doctor, and years of suffering, before being correctly diagnosed. The varied, vague, and sometimes fleeting symptoms can make an early diagnosis difficult. This not only takes an emotional toll on the patient is who being given ineffective treatments, or being told it's all in their head, but some research has shown that the longer someone is symptomatic before treatment, the less chance they have of a good outcome.
In an attempt to help Primary Care Providers (PCPs) diagnose - or at least suspect - Chiari, Dr. Diane Mueller, a Neurosurgery Nurse Practitioner, and neurosurgeon, Dr. John Oro, undertook a study to examine what symptoms patients with MRI verified Chiari first talked about (or to use the medical term, presented). What they found was both encouraging for PCP's making earlier diagnoses and validating for every patient who has a laundry list of symptoms.
In the study, Dr. Mueller analyzed the self-reported symptoms of 265 Chiari patients who ranged in age from 12-78. The group included 221 women and 44 men. The size of the malformations ranged from 3mm-30mm, with most patients falling in the 5mm-10mm range. Thirty-seven patients had syrinxes, although not every patient underwent a full spine MRI. Interestingly, 3 patients had thoracic syrinxes, without the more common cervical syrinx. Also of note is that 3 patients were asymptomatic.
The encouraging part of what the researchers found is that 13 symptoms were reported by more than half the patients, with 98% of them saying they suffered from headaches. While the headache finding is not surprising, Dr. Mueller points out that the way Chiari headaches are usually described by patients is different than standard tension and migraine headaches. Chiari headaches are usually described as starting in the back of the head and sometimes radiating forward to behind the eyes. The pain is described as a feeling of intense pressure, or even explosive in nature, and is brought on or aggravated by straining (Valsalva maneuver), coughing, sneezing, posture, singing, laughing, etc. The study also noted that some patients had modified their lifestyles to avoid situations, such as singing or laughing, which would bring on the headaches.
The validating part of the research - at least from a patient's perspective - is the tremendous variation among symptoms. Forty-nine distinct symptoms were reported by two or more people and 95% of the patients reported 5 or more symptoms. As demonstrated by the extensive list, Chiari can affect many different parts of the body in many different ways. And of course, once the body is compromised for an extended period of time, secondary factors, like depression, come into play.
Symptoms Reported By At Least 50% Of Patients
Symptom-%
Headache-98
Dizziness-84
Difficulty sleeping-72
Weakness in arms/hands-69
Neck pain-67
Numbness/tingling in arm, hand-62
Fatigue-59
Nausea-58
Shortness of breath-57
Blurred Vision-57
Tinnitus-56
Difficulty swallowing-54
Leg weakness-52
Symptoms Reported By Less Than 50% Of Patients
(20%-50%) - depression, body weakness, balance problem, memory problems, leg/foot numbness, hoarse voice, chest pain, facial numbness, anxiety, slurred speech, arm pain, abdominal pain, photo-phobia
(<20%) - tachycardia, trouble hearing, vomiting, double vision, word-finding problems, vision loss, blackouts, apnea(night), vertigo, loss of peripheral vision, nystagmus, earache, nosebleeds, snoring, thoracic pain, hypo-tension, wake up choking, leg pain, palpitations, hypertension, abnormal gag reflex, facial pain/tingling
************************************************** ************************************************** ********************************
We have been lucky so far that Xander has a diagnosis so we can monitor him as he grows. It is very important to know that you have a chiari and to keep an eye on it as neural problems can occur if it goes unchecked. So far he seems to be without symptom as many young children are. I spent some time reading a support forum of chiari sufferers and it seems many of them never knew they had a chiari until they were 30 or 40 and suddenly started having symptoms- some of them pretty life altering. For now all I can do is educate myself and others regarding this disturbing possible secondary diagnosis of cranio and hope Xander never does have any issues with his 5mm herniation.
Chiari Research Info for doctors
************************************************** ************************************************** *********************************
A study published in the March, 2004 issue of the Journal of the American Academy of Nurse Practitioners has verified what Chiari patients have known for years; namely, that while some symptoms are common to many Chiari sufferers, the malformation also causes an array of symptoms which can vary widely from person to person. Indeed, one of the more common email questions this publication receives is asking whether X, Y, and Z symptoms are related to Chiari.
This plethora of Chiari related symptoms is not only a source of frustration for patients, but it is also a contributing factor to the all too often missed and delayed diagnoses that many patients endure. Both statistical and anecdotal evidence show that many patients go through doctor after doctor, and years of suffering, before being correctly diagnosed. The varied, vague, and sometimes fleeting symptoms can make an early diagnosis difficult. This not only takes an emotional toll on the patient is who being given ineffective treatments, or being told it's all in their head, but some research has shown that the longer someone is symptomatic before treatment, the less chance they have of a good outcome.
In an attempt to help Primary Care Providers (PCPs) diagnose - or at least suspect - Chiari, Dr. Diane Mueller, a Neurosurgery Nurse Practitioner, and neurosurgeon, Dr. John Oro, undertook a study to examine what symptoms patients with MRI verified Chiari first talked about (or to use the medical term, presented). What they found was both encouraging for PCP's making earlier diagnoses and validating for every patient who has a laundry list of symptoms.
In the study, Dr. Mueller analyzed the self-reported symptoms of 265 Chiari patients who ranged in age from 12-78. The group included 221 women and 44 men. The size of the malformations ranged from 3mm-30mm, with most patients falling in the 5mm-10mm range. Thirty-seven patients had syrinxes, although not every patient underwent a full spine MRI. Interestingly, 3 patients had thoracic syrinxes, without the more common cervical syrinx. Also of note is that 3 patients were asymptomatic.
The encouraging part of what the researchers found is that 13 symptoms were reported by more than half the patients, with 98% of them saying they suffered from headaches. While the headache finding is not surprising, Dr. Mueller points out that the way Chiari headaches are usually described by patients is different than standard tension and migraine headaches. Chiari headaches are usually described as starting in the back of the head and sometimes radiating forward to behind the eyes. The pain is described as a feeling of intense pressure, or even explosive in nature, and is brought on or aggravated by straining (Valsalva maneuver), coughing, sneezing, posture, singing, laughing, etc. The study also noted that some patients had modified their lifestyles to avoid situations, such as singing or laughing, which would bring on the headaches.
The validating part of the research - at least from a patient's perspective - is the tremendous variation among symptoms. Forty-nine distinct symptoms were reported by two or more people and 95% of the patients reported 5 or more symptoms. As demonstrated by the extensive list, Chiari can affect many different parts of the body in many different ways. And of course, once the body is compromised for an extended period of time, secondary factors, like depression, come into play.
Symptoms Reported By At Least 50% Of Patients
Symptom-%
Headache-98
Dizziness-84
Difficulty sleeping-72
Weakness in arms/hands-69
Neck pain-67
Numbness/tingling in arm, hand-62
Fatigue-59
Nausea-58
Shortness of breath-57
Blurred Vision-57
Tinnitus-56
Difficulty swallowing-54
Leg weakness-52
Symptoms Reported By Less Than 50% Of Patients
(20%-50%) - depression, body weakness, balance problem, memory problems, leg/foot numbness, hoarse voice, chest pain, facial numbness, anxiety, slurred speech, arm pain, abdominal pain, photo-phobia
(<20%) - tachycardia, trouble hearing, vomiting, double vision, word-finding problems, vision loss, blackouts, apnea(night), vertigo, loss of peripheral vision, nystagmus, earache, nosebleeds, snoring, thoracic pain, hypo-tension, wake up choking, leg pain, palpitations, hypertension, abnormal gag reflex, facial pain/tingling
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