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ARNOLD-CHIARI MALFORMATION?
I just got my MRI results back(which im sure everyone saw and now knows my real name,oops!) and i don't have MS but i do have Arnold-Chiari malformation. Which i never even heard of and im hoping that someone hear might know more about it.
Hi, Kiddo. Has the doctor told you what type of ACM you have? Have they discussed which of your symptoms this may be causing or whether they are giving you a surgical consult?
The condition is not rare and there are multiple support organizations for it.
http://****.org
This next one you'll have to "adjust " MedHelp doesn't like "dot com" links
http://www.****
I hope this is treatable for you and is the answer and solution to your problems.
I'll keep my eyes open for more good info. You can get a lot more information by doing a search on the term. There were several sites for the layman, using clear language, but they all had a "dot com" address and we are'nt supposed to link to commercial sites.
Quix
The condition is not rare and there are multiple support organizations for it.
http://****.org
This next one you'll have to "adjust " MedHelp doesn't like "dot com" links
http://www.****
I hope this is treatable for you and is the answer and solution to your problems.
I'll keep my eyes open for more good info. You can get a lot more information by doing a search on the term. There were several sites for the layman, using clear language, but they all had a "dot com" address and we are'nt supposed to link to commercial sites.
Quix
I have read alot about this lately. My sister was just dx with it. Did the doctor mention which stage it's in? In my sisters case........surgery is not needed. What I didnt like about it, was they have to treat each symptom seperately. Her husband is having open heart surgery on Thursday (say a prayer please) and she is trying to deal with this all at the same time. Her worse sx right now are the daily headaches, which turn into migraines.
I will keep you in my prayers.
Blessings,
Beth
I will keep you in my prayers.
Blessings,
Beth
Hi there!
I am sorry you have been diagnosed with this condition. I watched an episode of "Mystery Diagnosis" on I think Discovery Health Channel about this condition and there was a special center up in, I think New York State where the girl that had the condition went to have treatment.
Her case was pretty severe and she was in a tremendous amount of pain with light sensitivity for a very long time before they firgured out what was wrong with her. It was all very interesting. I will see what I can find out for you. I have not read your other post yet so I will do that also.
Hugs!
Kristin
I am sorry you have been diagnosed with this condition. I watched an episode of "Mystery Diagnosis" on I think Discovery Health Channel about this condition and there was a special center up in, I think New York State where the girl that had the condition went to have treatment.
Her case was pretty severe and she was in a tremendous amount of pain with light sensitivity for a very long time before they firgured out what was wrong with her. It was all very interesting. I will see what I can find out for you. I have not read your other post yet so I will do that also.
Hugs!
Kristin
I can see how this can be mistaken for MS. Sweetie, I am really worried about you, how are you doing with the dx? You know, just because you don't have MS doesn't mean you have to leave here. Once your in, your in forever. We are family here.
Sending Many, Many Cyber Hugs,
Ada
Sending Many, Many Cyber Hugs,
Ada
This is some info I copied & pasted about this, I p.m.'d you this info but I think others here need this info as well.
The Chiari I Malformation is considered a congenital malformation, although there have been some reported cases of an acquired form. It is characterized by a small or misshapen posterior fossa (the compartment in the back of the skull), a reduction in cerebrospinal fluid pathways and a protrusion of the cerebellar tonsils through the bottom of the skull (foramen magnum) into the spinal canal. The tonsils would normally be round but often become elongated as they protrude down the spinal canal. Diagnosis can be difficult because not all patients will have the classical sign of deeply herniated tonsils.
Since the advent of MRI, the incidence of the Chiari I Malformation has risen dramatically. MRI is safe and painless and currently the most reliable means available for diagnosing Chiari Malformations. Chiari Malformations are also known as herniation of the cerebellar tonsils, cerebellar ectopia, hindbrain herniation and Arnold-Chiari malformations.
Many people with the Chiari I Malformation experience no symptoms. When symptoms are present, they usually do not appear until adolescence or early adulthood, but can occasionally be seen in young children. The majority of patients complain of severe head and neck pain. Headaches are often accentuated by coughing, sneezing or straining. Patients may complain of dizziness, vertigo, disequilibrium, 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.
The Chiari I Malformations may also be associated with other disorders such as hydrocephalus (build up of fluid in the ventricles of the brain) or Syringomyelia. Syringomyelia is a disorder in which cerebrospinal fluid enters the spinal cord, forming a cavity known as a syrinx. It is recommended that patients diagnosed with a Chiari Malformation have the entire spine imaged to rule out the presence of a syrinx, since it may be a consideration in treatment and prognosis.
Many people with the Chiari I Malformation experience no symptoms. When symptoms are present, they usually do not appear until adolescence or early adulthood, but can occasionally be seen in young children. The majority of patients complain of severe head and neck pain. Headaches are often accentuated by coughing, sneezing or straining. Patients may complain of dizziness, vertigo, disequilibrium, 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.
The Chiari I Malformations may also be associated with other disorders such as hydrocephalus (build up of fluid in the ventricles of the brain) or Syringomyelia. Syringomyelia is a disorder in which cerebrospinal fluid enters the spinal cord, forming a cavity known as a syrinx. It is recommended that patients diagnosed with a Chiari Malformation have the entire spine imaged to rule out the presence of a syrinx, since it may be a consideration in treatment and prognosis.
The Chiari I Malformation is considered a congenital malformation, although there have been some reported cases of an acquired form. It is characterized by a small or misshapen posterior fossa (the compartment in the back of the skull), a reduction in cerebrospinal fluid pathways and a protrusion of the cerebellar tonsils through the bottom of the skull (foramen magnum) into the spinal canal. The tonsils would normally be round but often become elongated as they protrude down the spinal canal. Diagnosis can be difficult because not all patients will have the classical sign of deeply herniated tonsils.
Since the advent of MRI, the incidence of the Chiari I Malformation has risen dramatically. MRI is safe and painless and currently the most reliable means available for diagnosing Chiari Malformations. Chiari Malformations are also known as herniation of the cerebellar tonsils, cerebellar ectopia, hindbrain herniation and Arnold-Chiari malformations.
Many people with the Chiari I Malformation experience no symptoms. When symptoms are present, they usually do not appear until adolescence or early adulthood, but can occasionally be seen in young children. The majority of patients complain of severe head and neck pain. Headaches are often accentuated by coughing, sneezing or straining. Patients may complain of dizziness, vertigo, disequilibrium, 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.
The Chiari I Malformations may also be associated with other disorders such as hydrocephalus (build up of fluid in the ventricles of the brain) or Syringomyelia. Syringomyelia is a disorder in which cerebrospinal fluid enters the spinal cord, forming a cavity known as a syrinx. It is recommended that patients diagnosed with a Chiari Malformation have the entire spine imaged to rule out the presence of a syrinx, since it may be a consideration in treatment and prognosis.
Many people with the Chiari I Malformation experience no symptoms. When symptoms are present, they usually do not appear until adolescence or early adulthood, but can occasionally be seen in young children. The majority of patients complain of severe head and neck pain. Headaches are often accentuated by coughing, sneezing or straining. Patients may complain of dizziness, vertigo, disequilibrium, 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.
The Chiari I Malformations may also be associated with other disorders such as hydrocephalus (build up of fluid in the ventricles of the brain) or Syringomyelia. Syringomyelia is a disorder in which cerebrospinal fluid enters the spinal cord, forming a cavity known as a syrinx. It is recommended that patients diagnosed with a Chiari Malformation have the entire spine imaged to rule out the presence of a syrinx, since it may be a consideration in treatment and prognosis.
Hi
I was worried about you....You haven't been around in a while.....I'm sorry that you received this news...
I really don't know much about it, aside of what I read online...Hopefully others here will chime in with something...
What did the doctor specifically say about it? Will you need surgery?
Tammy
I was worried about you....You haven't been around in a while.....I'm sorry that you received this news...
I really don't know much about it, aside of what I read online...Hopefully others here will chime in with something...
What did the doctor specifically say about it? Will you need surgery?
Tammy
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