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Chiari Research Info for doctors
Hi Everyone...I came across this and wanted to share. I wasn't sure if I was ok to copy the link so I just cut and pasted it. If anyone wants the link just PM me! I highlighted all the symptoms I had or have (turned out to be just 5 that I don't!!) and I am going to bring this to my doctor on Thursday in hopes that she is willing to learn!
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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*, photophobia*
(<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*, hypotension, wake up choking*, leg pain*, palpitations*, hypertension, abnormal gag reflex*, facial pain/tingling*
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Hopefully this is a help to some of you!
Carolyn
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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*, photophobia*
(<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*, hypotension, wake up choking*, leg pain*, palpitations*, hypertension, abnormal gag reflex*, facial pain/tingling*
************************************************************************************************************************************
Hopefully this is a help to some of you!
Carolyn
hahaha...I know I've googled my own symptoms and come back to my own thread...sad but true!!
WOW! I took Selma's advise and googled "Diane Mueller, Chiari and pregnancy" and a link this exact thread was like third on the list!!! Funny how things come full circle sometimes ain't it? lol
Your welcome :)
I found it really handy to actually see percentages behind it..it sort of validates us all!! I was really amazed that all of the above 50% things I had, every one!! I'm hoping that if we get this around to the DRs and they see people that have all those things, they may have a better clue on what's going on.
The sleep thing with your DS must be really tough...I know my son has insomnia here and there and it is so frustrating (for child and parent) so I can only imagine if it is happening every day!! I pray for you that the specialist appt. gives you something to work with!
The weather has got a lot better here...we are back to SUN!! I have been trying to get out and walk too..just being in the sun soothes the soul!
Take care
Carolyn
I found it really handy to actually see percentages behind it..it sort of validates us all!! I was really amazed that all of the above 50% things I had, every one!! I'm hoping that if we get this around to the DRs and they see people that have all those things, they may have a better clue on what's going on.
The sleep thing with your DS must be really tough...I know my son has insomnia here and there and it is so frustrating (for child and parent) so I can only imagine if it is happening every day!! I pray for you that the specialist appt. gives you something to work with!
The weather has got a lot better here...we are back to SUN!! I have been trying to get out and walk too..just being in the sun soothes the soul!
Take care
Carolyn
Hi Carolyn.
Thanks for the symptoms list, what great info. DS has quite a bit of symptoms listed.
I find lately that he is having a lot of memory issues, and I see that posted. Also, not being able to sleep has been terrible for him, and it is really affecting his studies, but we are trying to work around his sleep schedule. It is not uncommon for him to be up until 2 to 4 am before he falls asleep. I try to make sure he gets at the very least 8 hours of sleep before I try to wake him, but sometimes then I can't get him up.
Just counting the days until we see our specialist. Seems like time is standing still right now cause I just want that day to come.
I hope today finds you feeling well, and that the weather has been better. DS and I got out for 2 good walks last week, it was so nice to be out without all of the winter gear.
Barb :)
Thanks for the symptoms list, what great info. DS has quite a bit of symptoms listed.
I find lately that he is having a lot of memory issues, and I see that posted. Also, not being able to sleep has been terrible for him, and it is really affecting his studies, but we are trying to work around his sleep schedule. It is not uncommon for him to be up until 2 to 4 am before he falls asleep. I try to make sure he gets at the very least 8 hours of sleep before I try to wake him, but sometimes then I can't get him up.
Just counting the days until we see our specialist. Seems like time is standing still right now cause I just want that day to come.
I hope today finds you feeling well, and that the weather has been better. DS and I got out for 2 good walks last week, it was so nice to be out without all of the winter gear.
Barb :)
COMMUNITY LEADER
Thanks Carolyn...Dr Oro and Dr Mueller write a lot of informative articles...and neone wanting info on being pregnant with chiari or a syrinx should google Dr Diane Mueller....she is a foremost authority on it and has written articles and books on the topic.The 2 make a great research team and r a wealth of info they have published.
"selma"
"selma"
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