Guest guest Posted October 14, 2002 Report Share Posted October 14, 2002 Hi all, While Chiari 1 can cause some of the MSA problems, it often has a symptom of numbness in some extremeties which is not often a symptom of MSA (see symptoms listed below). If you have a syrnix (cyst) you should certainly be checked out for difficulties with an eye toward looking at Chiari as a possible problem. However, ask your doctor if you have already been checked for this possibility as you may have already been checked. Our doctors found my daughter had Chiari 1 and the same group of doctors found my wife had MSA. There are many good neurologists who can tell the difference. It has been around and diagnosed for over 100 years. I do not know what "experts in MSA" these people are seeing, but I would trust my doctor over a layman reading your MRI. If your Chiari problems did not show up until you were over 30 years old it is doubtful that it would be mistaken for MSA very often. We did have someone here on the list, about 18 months ago that complained of numbness in one hand and that sounded like possible Chiari, but most here have seen real experts in MSA and are correctly diagnosed. Note that this person's daughter was showing symptoms before nine years of age. Sorry, but North Shore is not the only place in North America that can diagnose Chiari or do the operation. The best plan for fighting these disorders is to work with your family doctor and have them direct you to the proper doctors. They usually know you and can help you make good decisions on proper care. Our family doctor got us through a logical sequence of doctors to rule out spinal problems, brain stem problems, etc to find the problem. We had been with that doctor since 1976 and he had our records on Charlotte from 1947 and me from 1951. Whatever yo do, do NOT suddenly dump your family doctor because someone says they MIGHT be wrong. Also do not stop your MSA meds without talking to your doctor, it can kill you. Take care, Bill Werre From NIH http://www.ninds.nih.gov/health_and_medical/disorders/chiari_doc.htm Symptoms usually include vomiting, muscle weakness in the head and face, difficulty swallowing, and varying degrees of mental impairment. Paralysis of the arms and legs may also occur. As they grow older, adults and adolescents with Chiari malformation who previously were asymptomatic may show signs of progressive brain impairment, such as involuntary, rapid, downward eye movements. Other symptoms may include dizziness, headache, double vision, deafness, an impaired ability to coordinate movement, and episodes of acute pain in and around the eyes. From http://www.rarediseases.org/search/rdbdetail_abstract.html?disname=Arnold%20Chiari%20Syndrome General Discussion Arnold-Chiari Syndrome is a rare malformation of the brain that is present at birth. Abnormalities at the base of the brain may include the displacement of the lower portion of the brain (cerebellum) and/or brain stem through the opening in the back of the skull (foramen magnum). Portions of the brain typically reach the spinal canal (upper cervical area). A developmental defect of the central nervous system may occur in some infants with Arnold-Chiari Syndrome. A sac (myelomeningocele or herniated pouch) may bulge through an abnormal opening in the spinal column and may contain portions of the spinal cord, spinal membranes, and/or cerebrospinal fluid. Some infants may also have abnormal accumulations of cerebrospinal fluid in the skull (hydrocephalus). Other malformations of the brain and spinal cord (i.e., spina bifida) may also occur. Recently the term Arnold-Chiari Syndrome has been limited to congenital malformations of the cerebellum and brain stem that displace these parts of the brain into the spinal canal. Chiari Type I is used to describe individuals who have an extension of the brain into the spinal canal without a myelomeningocele. Chiari Type II describes this brain malformation along with myelomeningocele. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 14, 2002 Report Share Posted October 14, 2002 Hi all, While Chiari 1 can cause some of the MSA problems, it often has a symptom of numbness in some extremeties which is not often a symptom of MSA (see symptoms listed below). If you have a syrnix (cyst) you should certainly be checked out for difficulties with an eye toward looking at Chiari as a possible problem. However, ask your doctor if you have already been checked for this possibility as you may have already been checked. Our doctors found my daughter had Chiari 1 and the same group of doctors found my wife had MSA. There are many good neurologists who can tell the difference. It has been around and diagnosed for over 100 years. I do not know what "experts in MSA" these people are seeing, but I would trust my doctor over a layman reading your MRI. If your Chiari problems did not show up until you were over 30 years old it is doubtful that it would be mistaken for MSA very often. We did have someone here on the list, about 18 months ago that complained of numbness in one hand and that sounded like possible Chiari, but most here have seen real experts in MSA and are correctly diagnosed. Note that this person's daughter was showing symptoms before nine years of age. Sorry, but North Shore is not the only place in North America that can diagnose Chiari or do the operation. The best plan for fighting these disorders is to work with your family doctor and have them direct you to the proper doctors. They usually know you and can help you make good decisions on proper care. Our family doctor got us through a logical sequence of doctors to rule out spinal problems, brain stem problems, etc to find the problem. We had been with that doctor since 1976 and he had our records on Charlotte from 1947 and me from 1951. Whatever yo do, do NOT suddenly dump your family doctor because someone says they MIGHT be wrong. Also do not stop your MSA meds without talking to your doctor, it can kill you. Take care, Bill Werre From NIH http://www.ninds.nih.gov/health_and_medical/disorders/chiari_doc.htm Symptoms usually include vomiting, muscle weakness in the head and face, difficulty swallowing, and varying degrees of mental impairment. Paralysis of the arms and legs may also occur. As they grow older, adults and adolescents with Chiari malformation who previously were asymptomatic may show signs of progressive brain impairment, such as involuntary, rapid, downward eye movements. Other symptoms may include dizziness, headache, double vision, deafness, an impaired ability to coordinate movement, and episodes of acute pain in and around the eyes. From http://www.rarediseases.org/search/rdbdetail_abstract.html?disname=Arnold%20Chiari%20Syndrome General Discussion Arnold-Chiari Syndrome is a rare malformation of the brain that is present at birth. Abnormalities at the base of the brain may include the displacement of the lower portion of the brain (cerebellum) and/or brain stem through the opening in the back of the skull (foramen magnum). Portions of the brain typically reach the spinal canal (upper cervical area). A developmental defect of the central nervous system may occur in some infants with Arnold-Chiari Syndrome. A sac (myelomeningocele or herniated pouch) may bulge through an abnormal opening in the spinal column and may contain portions of the spinal cord, spinal membranes, and/or cerebrospinal fluid. Some infants may also have abnormal accumulations of cerebrospinal fluid in the skull (hydrocephalus). Other malformations of the brain and spinal cord (i.e., spina bifida) may also occur. Recently the term Arnold-Chiari Syndrome has been limited to congenital malformations of the cerebellum and brain stem that displace these parts of the brain into the spinal canal. Chiari Type I is used to describe individuals who have an extension of the brain into the spinal canal without a myelomeningocele. Chiari Type II describes this brain malformation along with myelomeningocele. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2002 Report Share Posted October 15, 2002 See my replies embedded in the message below... > Hi all, > > While Chiari 1 can cause some of the MSA problems, it often has a > symptom of numbness in some extremeties which is not often a symptom of > MSA (see symptoms listed below). Chiari can cause alot of symptoms. Not all Chiari patients have numbness. My daughter didn't. Some do. Some don't. There's a wide range of symptoms. >If you have a syrnix (cyst) you should > certainly be checked out for difficulties with an eye toward looking at > Chiari as a possible problem. However, ask your doctor if you have > already been checked for this possibility as you may have already been > checked. Our doctors found my daughter had Chiari 1 and the same group > of doctors found my wife had MSA. There are many good neurologists who > can tell the difference. It has been around and diagnosed for over 100 > years. Wrong! Yes, it has been around for 100 years or more, but it has only recently been redefined with new criteria not known, understood or believed by many doctors. Neurologists are not usually the best to diagnose it anyway - it's usually neurousurgeons and radiologists who diagnose it. As I also said previously, it's very often missed, especially when the cerebellar tonsils are not herniated more than 5mm. Several neurologists, neurosurgeons and neuroradiologists saw my daughter's MRIs and missed it. Like I also said, I've been a member of a large Chiari forum and you'd be surprised at the lack of knowledge there is out there on this. > > I do not know what " experts in MSA " these people are seeing, but I > would trust my doctor over a layman reading your MRI. If your Chiari > problems did not show up until you were over 30 years old it is doubtful > that it would be mistaken for MSA very often. Laymen can be wrong and you've just proved it. People's symptoms can show up before or after 30 years old - here are results from a poll at the Chiari forum I'm a member of: Age of onset of symptoms: 0-10 20 13.16% 10-20 28 18.42% 20-30 45 29.61% 30-40 43 28.29% 40 and over 16 10.53% >We did have someone here > on the list, about 18 months ago that complained of numbness in one hand > and that sounded like possible Chiari, but most here have seen real > experts in MSA and are correctly diagnosed. Note that this person's > daughter was showing symptoms before nine years of age. Sorry, but > North Shore is not the only place in North America that can diagnose > Chiari or do the operation. No North Shore is not the only place which can diagnose Chiari. But they are the ones who have redefined the criteria and are one of only a handful of docs who diagnose Chiari I when the cerebellar tonsils are not herniated more than 5mm. They are considered the best in the world at this. People are travelling from all over to see them. They ONLY deal with Chiari and related disorders, such as Syringomyelia. > > The best plan for fighting these disorders is to work with your family > doctor and have them direct you to the proper doctors. They usually > know you and can help you make good decisions on proper care. Are you a doctor? >Our > family doctor got us through a logical sequence of doctors to rule out > spinal problems, brain stem problems, etc to find the problem. We had > been with that doctor since 1976 and he had our records on Charlotte > from 1947 and me from 1951. Whatever yo do, do NOT suddenly dump your > family doctor because someone says they MIGHT be wrong. Also do not > stop your MSA meds without talking to your doctor, it can kill you. > I agree that you shouldn't dump your doctor or meds if you want to check other things out. However, I think any ill person has the right to check any other possibility out there for their problems - if anyone does, I'd be happy to help them. If you don't, then that's your business. All the best, Eurico http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve & db=PubMe d & list_uids=10232534 & dopt=Abstract " Tonsillar herniation of less than 5 mm does not exclude the diagnosis " http://www.asap4sm.com/chiariwho.html " Diagnosis can be difficult because not all patients will have the classical sign of deeply herniated tonsils. " http://www.asap4sm.com/docscorner/milhorat01.html > Take care, Bill Werre > > From NIH > http://www.ninds.nih.gov/health_and_medical/disorders/chiari_doc.htm > > Symptoms usually include vomiting, muscle weakness in the head and face, > difficulty swallowing, and varying degrees of mental impairment. > Paralysis of the arms and legs may also occur. As they grow older, > adults and adolescents with Chiari malformation who previously were > asymptomatic may show signs of progressive brain impairment, such as > involuntary, rapid, downward eye movements. Other symptoms may include > dizziness, headache, double vision, deafness, an impaired ability to > coordinate movement, and episodes of acute pain in and around the eyes. > > From > http://www.rarediseases.org/search/rdbdetail_abstract.html?disname=Arn old%20Chiari%20Syndrome > > General Discussion > Arnold-Chiari Syndrome is a rare malformation of the brain that is > present at birth. Abnormalities at the base of the brain may include the > displacement of the lower portion of the brain (cerebellum) and/or brain > stem through the opening in the back of the skull (foramen magnum). > Portions of the brain typically reach the spinal canal (upper cervical > area). A developmental defect of the central nervous system may occur in > some infants with Arnold-Chiari Syndrome. A sac (myelomeningocele or > herniated pouch) may bulge through an abnormal opening in the spinal > column and may contain portions of the spinal cord, spinal membranes, > and/or cerebrospinal fluid. Some infants may also have abnormal > accumulations of cerebrospinal fluid in the skull (hydrocephalus). Other > malformations of the brain and spinal cord (i.e., spina bifida) may also > occur. > > Recently the term Arnold-Chiari Syndrome has been limited to congenital > malformations of the cerebellum and brain stem that displace these parts > of the brain into the spinal canal. Chiari Type I is used to describe > individuals who have an extension of the brain into the spinal canal > without a myelomeningocele. Chiari Type II describes this brain > malformation along with myelomeningocele. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2002 Report Share Posted October 15, 2002 See my replies embedded in the message below... > Hi all, > > While Chiari 1 can cause some of the MSA problems, it often has a > symptom of numbness in some extremeties which is not often a symptom of > MSA (see symptoms listed below). Chiari can cause alot of symptoms. Not all Chiari patients have numbness. My daughter didn't. Some do. Some don't. There's a wide range of symptoms. >If you have a syrnix (cyst) you should > certainly be checked out for difficulties with an eye toward looking at > Chiari as a possible problem. However, ask your doctor if you have > already been checked for this possibility as you may have already been > checked. Our doctors found my daughter had Chiari 1 and the same group > of doctors found my wife had MSA. There are many good neurologists who > can tell the difference. It has been around and diagnosed for over 100 > years. Wrong! Yes, it has been around for 100 years or more, but it has only recently been redefined with new criteria not known, understood or believed by many doctors. Neurologists are not usually the best to diagnose it anyway - it's usually neurousurgeons and radiologists who diagnose it. As I also said previously, it's very often missed, especially when the cerebellar tonsils are not herniated more than 5mm. Several neurologists, neurosurgeons and neuroradiologists saw my daughter's MRIs and missed it. Like I also said, I've been a member of a large Chiari forum and you'd be surprised at the lack of knowledge there is out there on this. > > I do not know what " experts in MSA " these people are seeing, but I > would trust my doctor over a layman reading your MRI. If your Chiari > problems did not show up until you were over 30 years old it is doubtful > that it would be mistaken for MSA very often. Laymen can be wrong and you've just proved it. People's symptoms can show up before or after 30 years old - here are results from a poll at the Chiari forum I'm a member of: Age of onset of symptoms: 0-10 20 13.16% 10-20 28 18.42% 20-30 45 29.61% 30-40 43 28.29% 40 and over 16 10.53% >We did have someone here > on the list, about 18 months ago that complained of numbness in one hand > and that sounded like possible Chiari, but most here have seen real > experts in MSA and are correctly diagnosed. Note that this person's > daughter was showing symptoms before nine years of age. Sorry, but > North Shore is not the only place in North America that can diagnose > Chiari or do the operation. No North Shore is not the only place which can diagnose Chiari. But they are the ones who have redefined the criteria and are one of only a handful of docs who diagnose Chiari I when the cerebellar tonsils are not herniated more than 5mm. They are considered the best in the world at this. People are travelling from all over to see them. They ONLY deal with Chiari and related disorders, such as Syringomyelia. > > The best plan for fighting these disorders is to work with your family > doctor and have them direct you to the proper doctors. They usually > know you and can help you make good decisions on proper care. Are you a doctor? >Our > family doctor got us through a logical sequence of doctors to rule out > spinal problems, brain stem problems, etc to find the problem. We had > been with that doctor since 1976 and he had our records on Charlotte > from 1947 and me from 1951. Whatever yo do, do NOT suddenly dump your > family doctor because someone says they MIGHT be wrong. Also do not > stop your MSA meds without talking to your doctor, it can kill you. > I agree that you shouldn't dump your doctor or meds if you want to check other things out. However, I think any ill person has the right to check any other possibility out there for their problems - if anyone does, I'd be happy to help them. If you don't, then that's your business. All the best, Eurico http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve & db=PubMe d & list_uids=10232534 & dopt=Abstract " Tonsillar herniation of less than 5 mm does not exclude the diagnosis " http://www.asap4sm.com/chiariwho.html " Diagnosis can be difficult because not all patients will have the classical sign of deeply herniated tonsils. " http://www.asap4sm.com/docscorner/milhorat01.html > Take care, Bill Werre > > From NIH > http://www.ninds.nih.gov/health_and_medical/disorders/chiari_doc.htm > > Symptoms usually include vomiting, muscle weakness in the head and face, > difficulty swallowing, and varying degrees of mental impairment. > Paralysis of the arms and legs may also occur. As they grow older, > adults and adolescents with Chiari malformation who previously were > asymptomatic may show signs of progressive brain impairment, such as > involuntary, rapid, downward eye movements. Other symptoms may include > dizziness, headache, double vision, deafness, an impaired ability to > coordinate movement, and episodes of acute pain in and around the eyes. > > From > http://www.rarediseases.org/search/rdbdetail_abstract.html?disname=Arn old%20Chiari%20Syndrome > > General Discussion > Arnold-Chiari Syndrome is a rare malformation of the brain that is > present at birth. Abnormalities at the base of the brain may include the > displacement of the lower portion of the brain (cerebellum) and/or brain > stem through the opening in the back of the skull (foramen magnum). > Portions of the brain typically reach the spinal canal (upper cervical > area). A developmental defect of the central nervous system may occur in > some infants with Arnold-Chiari Syndrome. A sac (myelomeningocele or > herniated pouch) may bulge through an abnormal opening in the spinal > column and may contain portions of the spinal cord, spinal membranes, > and/or cerebrospinal fluid. Some infants may also have abnormal > accumulations of cerebrospinal fluid in the skull (hydrocephalus). Other > malformations of the brain and spinal cord (i.e., spina bifida) may also > occur. > > Recently the term Arnold-Chiari Syndrome has been limited to congenital > malformations of the cerebellum and brain stem that displace these parts > of the brain into the spinal canal. Chiari Type I is used to describe > individuals who have an extension of the brain into the spinal canal > without a myelomeningocele. Chiari Type II describes this brain > malformation along with myelomeningocele. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2002 Report Share Posted October 15, 2002 Eurico NO, I am not a doctor, I am a trained enigineer and deal in logic. I agree with you that all doctors are not equal, but you also need to look logically at your arguments, for instance you write: Laymen can be wrong and you've just proved it. People's symptoms can show up before or after 30 years old - here are results from a poll at the Chiari forum I'm a member of:Age of onset of symptoms:0-10 20 13.16% 10-20 28 18.42% 20-30 45 29.61% 30-40 43 28.29% 40 and over 16 10.53%Do you know that more than 98% of the people on this list had first symptoms at over 40 and that over about 90% of the people on this list had first symptoms at over 50?I attempt to help people on the list deal with problems associated with MSA and related brain cell breakdown. In contrast, Chiari is a problem associated with a blockage of the nerve signals. Do you agree with the NIH symptoms listed as normal for Chiari? I do not know how much money you have, but most here do not have the money for a trip to New York to see doctors at North Shore and of all the people currently active on this list I kno w of only two who sound as if they could have Chiari problems, (Deborah -NC and - OK). is still looking for a diagnoses and I hope they consider Chiari. It is my understanding (I could be wrong) that even North Shore does not consider Deborah's major problems to be caused by Chiari (am I wrong Deborah?).No, not all Chiari patients have numbness, but it is my understanding (I could be wrong as I am not a Chiari expert only a lowly engineer whose daughter has Chiari and another adopted daughter with a syrnix caused by injury) that numbeness is OFTEN a symptom in those with first symptoms after age 25. I am also NOT an expert in MSA, that is why I feel it is better to work with and help experts to find the problem.I AM somewhat of an expert on caregiving a MSA patient. I did that for 12 years and my wife did longer that normal for a MSA patient. I do NOT know a thing about the Canadian medical system and would not presume to tell you about t hat system, although it is my understanding that doctors there go through about the same training as here in the USA. But I do NOT know for sure as I have only been to Canada once. I have been to Australia once and met a very caring physician who went out of his way to talk to me about Ford who had both MSA and Cancer of the bladder. I feel that most doctors are trying their best to help the patients. I do not feel that doctor bashing helps anyone get better care and it can hurt people by creating mistrust in their doctor's advice. That is MY opinion and I am stuck with it.Take care, Bill Werre : Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2002 Report Share Posted October 15, 2002 Eurico NO, I am not a doctor, I am a trained enigineer and deal in logic. I agree with you that all doctors are not equal, but you also need to look logically at your arguments, for instance you write: Laymen can be wrong and you've just proved it. People's symptoms can show up before or after 30 years old - here are results from a poll at the Chiari forum I'm a member of:Age of onset of symptoms:0-10 20 13.16% 10-20 28 18.42% 20-30 45 29.61% 30-40 43 28.29% 40 and over 16 10.53%Do you know that more than 98% of the people on this list had first symptoms at over 40 and that over about 90% of the people on this list had first symptoms at over 50?I attempt to help people on the list deal with problems associated with MSA and related brain cell breakdown. In contrast, Chiari is a problem associated with a blockage of the nerve signals. Do you agree with the NIH symptoms listed as normal for Chiari? I do not know how much money you have, but most here do not have the money for a trip to New York to see doctors at North Shore and of all the people currently active on this list I kno w of only two who sound as if they could have Chiari problems, (Deborah -NC and - OK). is still looking for a diagnoses and I hope they consider Chiari. It is my understanding (I could be wrong) that even North Shore does not consider Deborah's major problems to be caused by Chiari (am I wrong Deborah?).No, not all Chiari patients have numbness, but it is my understanding (I could be wrong as I am not a Chiari expert only a lowly engineer whose daughter has Chiari and another adopted daughter with a syrnix caused by injury) that numbeness is OFTEN a symptom in those with first symptoms after age 25. I am also NOT an expert in MSA, that is why I feel it is better to work with and help experts to find the problem.I AM somewhat of an expert on caregiving a MSA patient. I did that for 12 years and my wife did longer that normal for a MSA patient. I do NOT know a thing about the Canadian medical system and would not presume to tell you about t hat system, although it is my understanding that doctors there go through about the same training as here in the USA. But I do NOT know for sure as I have only been to Canada once. I have been to Australia once and met a very caring physician who went out of his way to talk to me about Ford who had both MSA and Cancer of the bladder. I feel that most doctors are trying their best to help the patients. I do not feel that doctor bashing helps anyone get better care and it can hurt people by creating mistrust in their doctor's advice. That is MY opinion and I am stuck with it.Take care, Bill Werre : Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.