Jewel2
04-22-2004, 12:46 PM
H Everyone,
I found this information regarding a disease that can mimic the symptoms of several neurological disorders and thought it was appropriate to copy it here. (I did get permission from the poster to copy it.) So those of you who are still trying to figure out what is going on, here is something else to consider.
Julie
"Just a post script that I would like to add here and I would like for everyone who is suffering with RSD [or MS - added by Julie] to consider. Arnold Chiari Malformation 1 was once thought to be a rare congenital birth defect. With the advent of the MRI it is being seen more and more. There were so many people who were diagnosed with things like MS before MRI was available and when these people died, if by chance there was an autopsy performed, many were discovered to be suffering from Chiari and not MS or the many other things that were diagnosed.
Arnold Chiari Malformation and RSD [and MS] share many of the same symptoms but there are some things that just don't quite fit. I would like you all to consider this: if you tend to be on the short side, if you have major migraine-like headaches, are light sensitive, if you experience pain in your head that is not like pain but more like pressure and your neck is stiff as well as pain and stiffness in the shoulders, if your symptoms seem to be more one-sided you may very well be suffering from Arnold Chiari.
If you are experiencing hearing loss, widespread body aches and pains not unlike feeling as though you have the worst case of the flu you have ever had, if your having muscle weakness, extreme fatigue, feelings of nausea or have been diagnosed with RSD, MS, Fibro or Chronic Fatigue Syndrome, if you find that certain types of cloudy days make your eyes hurt and or your head hurt, if you are having pain and or pressure behind your eyes, experiencing double vision or nystigmus, if you feel like you are walking on broken glass and are having leg spasms and pain and muscle weakness, if you have numbness and tingling in your extremities as well as in your face and your head, if you seem to have chronic sinusitis, if you have back pain, if you find that walking on uneven ground is difficult or that when trying to walk up slopes or ramps it is almost more than you can do, if you run into walls and doorways, or find that your lumbar, hips and legs have so much more pain when trying to walk any distance, if you seem to be losing your balance more and more or you are experiencing more and more dizziness and or vertigo, if the pain and pressure in your head starts at the back of the head and progresses forward, up and over the head, if you are having or have ever had difficulty with gross and fine motor skills, if you find yourself dropping things more and more, please, please, please if only for your own peace of mind get an MRI of the head and neck.
Do you find that when you cough, sneeze, bend over and or laugh a little too hard, that your head feels like it is going to explode right out of the top of your head? This is one of the more common symptoms that shows up usually in your life as a young child, but also may not show up until adulthood. Many of us have had signs all our life, but passed them off as just being normal for us, and many of us may not have shown symptoms at all until we had some kind of trauma, maybe too much lifting or an auto accident. As in the case of my daughter and myself, we have always had the sneezing, coughing, laughing, bending over head pain/pressure, but because I have always experienced this, when my daughter experienced this it was just assumed that, oh well, she is just like her mother. It was a sign. Also, sudden outburst of anger and or rages that seem to come from out of nowhere and go away just as quickly as they came on. It is a sign.
When the result come in, look for anything on that written report that says anything about downward displacement of the cerebellar tonsils; or if it says that there is any kind of cerebellar herniation, keep in mind here that many docs and radiologist are of the old school on this but they don't believe (most of them anyway) that a cerebellar herniation of 0 to 5 mm is anything; run do not walk to a neurosurgeon who has major experience in Arnold Chiari Malformation. There are not very many of them out there. I was told that I had a herniation of 5mm and that I had chiari malformation and needed surgery and this was coming from my pain management doctor. My daughter was told that she had a 4 to 5 mm cerebellar herniation but that she didn't have chiari, this was on her report from her MRI...... She does have Chiari, a 1cm herniation, mine is almost 2cm and the experts that we are seeing in New York say that once they get in there and do the surgery, they find that the herniation is usually more than what is shown on the MRI. This is almost always the case.... I cannot stress this enough...
Please, if you find that most if not all of the symptoms are effecting you, please get that MRI and please look at the report yourself. Don't always trust the doc to believe that this is what is causing your symptoms.... As I said, most feel that a 5mm herniation is no big deal, that it can't be causing your symptoms. Don't believe them... It isn't the size of the herniation that determines the need for surgery, but the symptoms themselves and the effect they are having on your daily quality of life. Just please consider this as a possibility.. It is more common and more real than you know.
Thanks if you made it this far in this post, I know it was a bit long and I am sorry but I just cannot stress this enough......"
I found this information regarding a disease that can mimic the symptoms of several neurological disorders and thought it was appropriate to copy it here. (I did get permission from the poster to copy it.) So those of you who are still trying to figure out what is going on, here is something else to consider.
Julie
"Just a post script that I would like to add here and I would like for everyone who is suffering with RSD [or MS - added by Julie] to consider. Arnold Chiari Malformation 1 was once thought to be a rare congenital birth defect. With the advent of the MRI it is being seen more and more. There were so many people who were diagnosed with things like MS before MRI was available and when these people died, if by chance there was an autopsy performed, many were discovered to be suffering from Chiari and not MS or the many other things that were diagnosed.
Arnold Chiari Malformation and RSD [and MS] share many of the same symptoms but there are some things that just don't quite fit. I would like you all to consider this: if you tend to be on the short side, if you have major migraine-like headaches, are light sensitive, if you experience pain in your head that is not like pain but more like pressure and your neck is stiff as well as pain and stiffness in the shoulders, if your symptoms seem to be more one-sided you may very well be suffering from Arnold Chiari.
If you are experiencing hearing loss, widespread body aches and pains not unlike feeling as though you have the worst case of the flu you have ever had, if your having muscle weakness, extreme fatigue, feelings of nausea or have been diagnosed with RSD, MS, Fibro or Chronic Fatigue Syndrome, if you find that certain types of cloudy days make your eyes hurt and or your head hurt, if you are having pain and or pressure behind your eyes, experiencing double vision or nystigmus, if you feel like you are walking on broken glass and are having leg spasms and pain and muscle weakness, if you have numbness and tingling in your extremities as well as in your face and your head, if you seem to have chronic sinusitis, if you have back pain, if you find that walking on uneven ground is difficult or that when trying to walk up slopes or ramps it is almost more than you can do, if you run into walls and doorways, or find that your lumbar, hips and legs have so much more pain when trying to walk any distance, if you seem to be losing your balance more and more or you are experiencing more and more dizziness and or vertigo, if the pain and pressure in your head starts at the back of the head and progresses forward, up and over the head, if you are having or have ever had difficulty with gross and fine motor skills, if you find yourself dropping things more and more, please, please, please if only for your own peace of mind get an MRI of the head and neck.
Do you find that when you cough, sneeze, bend over and or laugh a little too hard, that your head feels like it is going to explode right out of the top of your head? This is one of the more common symptoms that shows up usually in your life as a young child, but also may not show up until adulthood. Many of us have had signs all our life, but passed them off as just being normal for us, and many of us may not have shown symptoms at all until we had some kind of trauma, maybe too much lifting or an auto accident. As in the case of my daughter and myself, we have always had the sneezing, coughing, laughing, bending over head pain/pressure, but because I have always experienced this, when my daughter experienced this it was just assumed that, oh well, she is just like her mother. It was a sign. Also, sudden outburst of anger and or rages that seem to come from out of nowhere and go away just as quickly as they came on. It is a sign.
When the result come in, look for anything on that written report that says anything about downward displacement of the cerebellar tonsils; or if it says that there is any kind of cerebellar herniation, keep in mind here that many docs and radiologist are of the old school on this but they don't believe (most of them anyway) that a cerebellar herniation of 0 to 5 mm is anything; run do not walk to a neurosurgeon who has major experience in Arnold Chiari Malformation. There are not very many of them out there. I was told that I had a herniation of 5mm and that I had chiari malformation and needed surgery and this was coming from my pain management doctor. My daughter was told that she had a 4 to 5 mm cerebellar herniation but that she didn't have chiari, this was on her report from her MRI...... She does have Chiari, a 1cm herniation, mine is almost 2cm and the experts that we are seeing in New York say that once they get in there and do the surgery, they find that the herniation is usually more than what is shown on the MRI. This is almost always the case.... I cannot stress this enough...
Please, if you find that most if not all of the symptoms are effecting you, please get that MRI and please look at the report yourself. Don't always trust the doc to believe that this is what is causing your symptoms.... As I said, most feel that a 5mm herniation is no big deal, that it can't be causing your symptoms. Don't believe them... It isn't the size of the herniation that determines the need for surgery, but the symptoms themselves and the effect they are having on your daily quality of life. Just please consider this as a possibility.. It is more common and more real than you know.
Thanks if you made it this far in this post, I know it was a bit long and I am sorry but I just cannot stress this enough......"
Sponsor
Jewel2
05-21-2004, 07:26 PM
Bumping up for Sweetsori
sickintoronto
05-22-2004, 01:45 AM
Can this disorder be seen in a CT scan of the head or only an MRI?
Thanks for your reply :wave:
Thanks for your reply :wave:
Jewel2
05-22-2004, 02:41 AM
I'm not sure of the answer to your question. I will check with the person who originally posted this info and try to get you an answer.
Take care,
Julie
Take care,
Julie
Jewel2
06-16-2004, 03:03 AM
Hi Toronto,
Sorry it took so long to get this answer for you, but my life has been out of control lately. Here's my friend's reply to your question:
"Yes occasionally a CT scan will show Chiari, but the best as for diagnosing would be the MRI. But it can sometimes show up on the CT."
Hope this helps.
Take care,
Julie
Sorry it took so long to get this answer for you, but my life has been out of control lately. Here's my friend's reply to your question:
"Yes occasionally a CT scan will show Chiari, but the best as for diagnosing would be the MRI. But it can sometimes show up on the CT."
Hope this helps.
Take care,
Julie
SweetSori
06-16-2004, 05:58 AM
hio its me again....u said it could be on a CT scan, well i had a CT scan a few months ago and was told that i was perfectly normal....coould this be the case? thanxx again for all your help! :jester:
Enas
06-18-2004, 10:57 AM
Interesting you'd mention "low tonsils" I did go to a neurosurgeon who said I had low tonisls, the formation is right below the line that they draw when deciding if it is a problem! But to him it doesn't warrent an explanation of the symptoms.
My actual MRI report never had a mention of it being low.
Medicine is an art indeed.
My actual MRI report never had a mention of it being low.
Medicine is an art indeed.
Mausea
06-18-2004, 12:48 PM
I'm a newbie and this is my first post on this forum but this one seems very appropriate for me.
My husband was just diagnosed with MS this May and his BIL (sister's dh) was diagnosed last year with a Chiari 1 Malformation and Fibromyalgia. Last night he asked me for my husband's neurologists number because he feels he was diagnosed incorrectly. I'll be very interested what a 2nd opinion with find out.
My husband was just diagnosed with MS this May and his BIL (sister's dh) was diagnosed last year with a Chiari 1 Malformation and Fibromyalgia. Last night he asked me for my husband's neurologists number because he feels he was diagnosed incorrectly. I'll be very interested what a 2nd opinion with find out.
Picus
06-30-2004, 02:56 AM
New to this board.
I have both PPMS and ACM. This makes it hard to identify which symptom is cause by the MS or ACM.
My Cerebellar tonsils protrude 9mm below the foramen magnum. My neuro does not believe that this is causing the majority of my symptoms. He credits them to my MS.
I have not seen a neuro surgen about my ACM yet. To be honest the though of decompression surgery on top of everything else is just a little to much for me right now.
Picus
I have both PPMS and ACM. This makes it hard to identify which symptom is cause by the MS or ACM.
My Cerebellar tonsils protrude 9mm below the foramen magnum. My neuro does not believe that this is causing the majority of my symptoms. He credits them to my MS.
I have not seen a neuro surgen about my ACM yet. To be honest the though of decompression surgery on top of everything else is just a little to much for me right now.
Picus
Jewel2
08-01-2004, 02:57 AM
Hi Picus,
I missed your post before - sorry for the late welcome. I hope you've been feeling better this past month.
Bumping this up for Nellie and whoever else it might help.
:wave:
Julie
I missed your post before - sorry for the late welcome. I hope you've been feeling better this past month.
Bumping this up for Nellie and whoever else it might help.
:wave:
Julie
Dessell
08-01-2004, 07:10 PM
Hi, this is an eye opening info for me,,especially the pain behind the head that goes up,,have that everyday,,will be sure to mention this to the neuor doc next visit.Thanks
Dessell
Dessell
Jewel2
08-01-2004, 07:16 PM
You're welcome. I've posted this same message in a couple of places and a couple of people have since found out they have Chiari's. Sometimes we have to pointedly ask our doctor about possibilities. We're our own best advocates.
Take care,
Julie
Take care,
Julie
wittyboy
08-02-2004, 12:05 AM
H Everyone,
I found this information regarding a disease that can mimic the symptoms of several neurological disorders and thought it was appropriate to copy it here. (I did get permission from the poster to copy it.) So those of you who are still trying to figure out what is going on, here is something else to consider.
Julie
"Just a post script that I would like to add here and I would like for everyone who is suffering with RSD [or MS - added by Julie] to consider. Arnold Chiari Malformation 1 was once thought to be a rare congenital birth defect. With the advent of the MRI it is being seen more and more. There were so many people who were diagnosed with things like MS before MRI was available and when these people died, if by chance there was an autopsy performed, many were discovered to be suffering from Chiari and not MS or the many other things that were diagnosed.
Arnold Chiari Malformation and RSD [and MS] share many of the same symptoms but there are some things that just don't quite fit. I would like you all to consider this: if you tend to be on the short side, if you have major migraine-like headaches, are light sensitive, if you experience pain in your head that is not like pain but more like pressure and your neck is stiff as well as pain and stiffness in the shoulders, if your symptoms seem to be more one-sided you may very well be suffering from Arnold Chiari.
If you are experiencing hearing loss, widespread body aches and pains not unlike feeling as though you have the worst case of the flu you have ever had, if your having muscle weakness, extreme fatigue, feelings of nausea or have been diagnosed with RSD, MS, Fibro or Chronic Fatigue Syndrome, if you find that certain types of cloudy days make your eyes hurt and or your head hurt, if you are having pain and or pressure behind your eyes, experiencing double vision or nystigmus, if you feel like you are walking on broken glass and are having leg spasms and pain and muscle weakness, if you have numbness and tingling in your extremities as well as in your face and your head, if you seem to have chronic sinusitis, if you have back pain, if you find that walking on uneven ground is difficult or that when trying to walk up slopes or ramps it is almost more than you can do, if you run into walls and doorways, or find that your lumbar, hips and legs have so much more pain when trying to walk any distance, if you seem to be losing your balance more and more or you are experiencing more and more dizziness and or vertigo, if the pain and pressure in your head starts at the back of the head and progresses forward, up and over the head, if you are having or have ever had difficulty with gross and fine motor skills, if you find yourself dropping things more and more, please, please, please if only for your own peace of mind get an MRI of the head and neck.
Do you find that when you cough, sneeze, bend over and or laugh a little too hard, that your head feels like it is going to explode right out of the top of your head? This is one of the more common symptoms that shows up usually in your life as a young child, but also may not show up until adulthood. Many of us have had signs all our life, but passed them off as just being normal for us, and many of us may not have shown symptoms at all until we had some kind of trauma, maybe too much lifting or an auto accident. As in the case of my daughter and myself, we have always had the sneezing, coughing, laughing, bending over head pain/pressure, but because I have always experienced this, when my daughter experienced this it was just assumed that, oh well, she is just like her mother. It was a sign. Also, sudden outburst of anger and or rages that seem to come from out of nowhere and go away just as quickly as they came on. It is a sign.
When the result come in, look for anything on that written report that says anything about downward displacement of the cerebellar tonsils; or if it says that there is any kind of cerebellar herniation, keep in mind here that many docs and radiologist are of the old school on this but they don't believe (most of them anyway) that a cerebellar herniation of 0 to 5 mm is anything; run do not walk to a neurosurgeon who has major experience in Arnold Chiari Malformation. There are not very many of them out there. I was told that I had a herniation of 5mm and that I had chiari malformation and needed surgery and this was coming from my pain management doctor. My daughter was told that she had a 4 to 5 mm cerebellar herniation but that she didn't have chiari, this was on her report from her MRI...... She does have Chiari, a 1cm herniation, mine is almost 2cm and the experts that we are seeing in New York say that once they get in there and do the surgery, they find that the herniation is usually more than what is shown on the MRI. This is almost always the case.... I cannot stress this enough...
Please, if you find that most if not all of the symptoms are effecting you, please get that MRI and please look at the report yourself. Don't always trust the doc to believe that this is what is causing your symptoms.... As I said, most feel that a 5mm herniation is no big deal, that it can't be causing your symptoms. Don't believe them... It isn't the size of the herniation that determines the need for surgery, but the symptoms themselves and the effect they are having on your daily quality of life. Just please consider this as a possibility.. It is more common and more real than you know.
Thanks if you made it this far in this post, I know it was a bit long and I am sorry but I just cannot stress this enough......"
I found this information regarding a disease that can mimic the symptoms of several neurological disorders and thought it was appropriate to copy it here. (I did get permission from the poster to copy it.) So those of you who are still trying to figure out what is going on, here is something else to consider.
Julie
"Just a post script that I would like to add here and I would like for everyone who is suffering with RSD [or MS - added by Julie] to consider. Arnold Chiari Malformation 1 was once thought to be a rare congenital birth defect. With the advent of the MRI it is being seen more and more. There were so many people who were diagnosed with things like MS before MRI was available and when these people died, if by chance there was an autopsy performed, many were discovered to be suffering from Chiari and not MS or the many other things that were diagnosed.
Arnold Chiari Malformation and RSD [and MS] share many of the same symptoms but there are some things that just don't quite fit. I would like you all to consider this: if you tend to be on the short side, if you have major migraine-like headaches, are light sensitive, if you experience pain in your head that is not like pain but more like pressure and your neck is stiff as well as pain and stiffness in the shoulders, if your symptoms seem to be more one-sided you may very well be suffering from Arnold Chiari.
If you are experiencing hearing loss, widespread body aches and pains not unlike feeling as though you have the worst case of the flu you have ever had, if your having muscle weakness, extreme fatigue, feelings of nausea or have been diagnosed with RSD, MS, Fibro or Chronic Fatigue Syndrome, if you find that certain types of cloudy days make your eyes hurt and or your head hurt, if you are having pain and or pressure behind your eyes, experiencing double vision or nystigmus, if you feel like you are walking on broken glass and are having leg spasms and pain and muscle weakness, if you have numbness and tingling in your extremities as well as in your face and your head, if you seem to have chronic sinusitis, if you have back pain, if you find that walking on uneven ground is difficult or that when trying to walk up slopes or ramps it is almost more than you can do, if you run into walls and doorways, or find that your lumbar, hips and legs have so much more pain when trying to walk any distance, if you seem to be losing your balance more and more or you are experiencing more and more dizziness and or vertigo, if the pain and pressure in your head starts at the back of the head and progresses forward, up and over the head, if you are having or have ever had difficulty with gross and fine motor skills, if you find yourself dropping things more and more, please, please, please if only for your own peace of mind get an MRI of the head and neck.
Do you find that when you cough, sneeze, bend over and or laugh a little too hard, that your head feels like it is going to explode right out of the top of your head? This is one of the more common symptoms that shows up usually in your life as a young child, but also may not show up until adulthood. Many of us have had signs all our life, but passed them off as just being normal for us, and many of us may not have shown symptoms at all until we had some kind of trauma, maybe too much lifting or an auto accident. As in the case of my daughter and myself, we have always had the sneezing, coughing, laughing, bending over head pain/pressure, but because I have always experienced this, when my daughter experienced this it was just assumed that, oh well, she is just like her mother. It was a sign. Also, sudden outburst of anger and or rages that seem to come from out of nowhere and go away just as quickly as they came on. It is a sign.
When the result come in, look for anything on that written report that says anything about downward displacement of the cerebellar tonsils; or if it says that there is any kind of cerebellar herniation, keep in mind here that many docs and radiologist are of the old school on this but they don't believe (most of them anyway) that a cerebellar herniation of 0 to 5 mm is anything; run do not walk to a neurosurgeon who has major experience in Arnold Chiari Malformation. There are not very many of them out there. I was told that I had a herniation of 5mm and that I had chiari malformation and needed surgery and this was coming from my pain management doctor. My daughter was told that she had a 4 to 5 mm cerebellar herniation but that she didn't have chiari, this was on her report from her MRI...... She does have Chiari, a 1cm herniation, mine is almost 2cm and the experts that we are seeing in New York say that once they get in there and do the surgery, they find that the herniation is usually more than what is shown on the MRI. This is almost always the case.... I cannot stress this enough...
Please, if you find that most if not all of the symptoms are effecting you, please get that MRI and please look at the report yourself. Don't always trust the doc to believe that this is what is causing your symptoms.... As I said, most feel that a 5mm herniation is no big deal, that it can't be causing your symptoms. Don't believe them... It isn't the size of the herniation that determines the need for surgery, but the symptoms themselves and the effect they are having on your daily quality of life. Just please consider this as a possibility.. It is more common and more real than you know.
Thanks if you made it this far in this post, I know it was a bit long and I am sorry but I just cannot stress this enough......"
wittyboy
08-02-2004, 12:07 AM
Jewel, Have you had any surgery yet .If so did it help.I have all of these symptoms and I suffer daily with great pain . My vision comes and goes and I have severe headaches and pressure in the neck. I iwll get an mri asap
Jewel2
08-02-2004, 12:51 AM
Hi Wittyboy! I guess I should clarify that I'm not the original poster of the article and I don't have Chiari. The person who did write it suffers from it as does her daughter. Her daughter just had her surgery last month. It's a little too soon to know how much of a success it was, but there was definite improvement. The mom, Marilyn, has had to postpone her surgery because of finances, but hopes to have it in the spring.
I would definitely talk about this with your doctor, and run a search on the Internet for more info.
Best wishes!!
Julie
I would definitely talk about this with your doctor, and run a search on the Internet for more info.
Best wishes!!
Julie
Iwantacure
09-19-2004, 07:29 PM
recently I've heard that mri can make cancer. I wonder, what anybody here thinks about that? does it worth to do it?
Help.
Help.