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Chari Type 1 - No Syrinx - Symptoms?
Hey there,
After a sudden onset of bad neck, arm, shoulder and hand pain/numbness on the right side which was constant but significantly worse at night, combined with dizziness and pain in the eye area in late December 2010, an MRI found a Chiari Type 1 tonsilar descent of 5.5mm. No pinched nerves, which they thought it might be originally (i saw a chiropractor, a physiotherapist and a massage therapist but saw no improvement), and although they saw "a minimal prominence of the central canal at the C2 level, measuring at most 1.5mm in diameter", no visible syrinx. I was put on Ultram for the pain, which helps to a degree. Sometime in late june 2011, I started experiencing tenderness, pain and pressure in the lower and middle part of the head, tightness in the throat, great fatigue, brain fog, difficulty swallowing/tightness in the throat and even a couple migraines, which is all very unusual for me, not to say alarming.
The neurologist I finally managed to see today told me that a 5.5mm tonsil herniation with no syrinx can't be the cause of my plethora of symptoms. She described the herniation as too small to be of consequence (an unexciting MRI report, as she described it), and told me the arm, hand and shoulder pain/numbness could not be due to the Chiari, since there was no syrinx. She concluded by saying she thought something was pinched or displaced in my arm which would cause the hand, arm, neck and shoulder pain/numbness, and that the other symptoms were probably stress-related, even though I have no history of stress or anxiety issues... She ordered nerve tests which will take several months to happen, and I am scheduled to see her for the test results in February 2012. I'm frustrated that it has now been 9 months since the problems started, and no one seems to have a clear answer as to what is happening to me. There are no Chiari specialists where I am (Ottawa, Ontario), and most doctors I have spoken with so far know little to nothing about Chiari.
My questions are as follow:
Is it possible for a "smaller" herniation such as mine, with no syrinx present to cause the symptoms I am experiencing?
Does anyone know of neurologists or doctors in Ottawa, Ontario that specialize in or are very knowledgeable about Chiari? If not, any not too far away?
These past nine months have been incredibly frustrating for me, my life is pretty much on hold, and I am still without any clear answers regarding what I'm experiencing. I greatly appreciate any information or suggestions you may have to offer. Thanks for reading.
After a sudden onset of bad neck, arm, shoulder and hand pain/numbness on the right side which was constant but significantly worse at night, combined with dizziness and pain in the eye area in late December 2010, an MRI found a Chiari Type 1 tonsilar descent of 5.5mm. No pinched nerves, which they thought it might be originally (i saw a chiropractor, a physiotherapist and a massage therapist but saw no improvement), and although they saw "a minimal prominence of the central canal at the C2 level, measuring at most 1.5mm in diameter", no visible syrinx. I was put on Ultram for the pain, which helps to a degree. Sometime in late june 2011, I started experiencing tenderness, pain and pressure in the lower and middle part of the head, tightness in the throat, great fatigue, brain fog, difficulty swallowing/tightness in the throat and even a couple migraines, which is all very unusual for me, not to say alarming.
The neurologist I finally managed to see today told me that a 5.5mm tonsil herniation with no syrinx can't be the cause of my plethora of symptoms. She described the herniation as too small to be of consequence (an unexciting MRI report, as she described it), and told me the arm, hand and shoulder pain/numbness could not be due to the Chiari, since there was no syrinx. She concluded by saying she thought something was pinched or displaced in my arm which would cause the hand, arm, neck and shoulder pain/numbness, and that the other symptoms were probably stress-related, even though I have no history of stress or anxiety issues... She ordered nerve tests which will take several months to happen, and I am scheduled to see her for the test results in February 2012. I'm frustrated that it has now been 9 months since the problems started, and no one seems to have a clear answer as to what is happening to me. There are no Chiari specialists where I am (Ottawa, Ontario), and most doctors I have spoken with so far know little to nothing about Chiari.
My questions are as follow:
Is it possible for a "smaller" herniation such as mine, with no syrinx present to cause the symptoms I am experiencing?
Does anyone know of neurologists or doctors in Ottawa, Ontario that specialize in or are very knowledgeable about Chiari? If not, any not too far away?
These past nine months have been incredibly frustrating for me, my life is pretty much on hold, and I am still without any clear answers regarding what I'm experiencing. I greatly appreciate any information or suggestions you may have to offer. Thanks for reading.
It is very frustrating. I was not aware of this site or anyone to talk to when I had my 3 surgeries back n 2009. No one n our town had ever heard of Chiari. Yes...the surgeries helped, but still lots of pain every day n different places. I still work 40 hrs wk at hospital but I'm slowly go n down hill. Off today w head hurtn but was at work yesterday due to a situation for over 14 hrs. Too much for me!
Hope u find answers. This site has been a God-send!!!
Hope u find answers. This site has been a God-send!!!
I also want to welcome you to this forum. You will find a lot of your answer's here. I have been on here for at leat 1 1/2 year's and this site is so helpful and so supportive. My herination was at 5.5 and it a year's time it was at 6.5 as many will tell you the size really doesn't matter. It's the life that you are living that you have to take into consideration. Like Selma say's, it is so flustrating with having Chairi because doctor's most times don't know much about them. I was blessed enough to find a doctor here in my home town Mi. and was able to have surgery and now I am on my way to recovery, but I have found surgery isn't the answer to our prayer for pain, but it does slow the progression down and it does help with the pressure headaches. Having Chairi and having a herination. Just inmagine your brain is slowly slipping out of your skull. My grandkid's didn't quite understand what was going on with me so I told them. "Grandma is so smart my brain doesn't fit in my head". LOL they were quiet for a minute absorbing what I said and they replied "Grandma you are smart" LOL. how cute is that. Just keep looking and you will find the doctor that is right for you. Because you definetly want one who you trust and who know's about this issue. Please keep us all updated and get on and question any time. I do it all the time and no one has complained yet. We all understand what you are going through. Good luck. Talk to you soon. Hope you have a better day.
COMMUNITY LEADER
Cervical stinosis with bulging disks can cause many of the same symptoms that chiari causes bcuz combined and in the same area it can cause a CSF obstruction.I have this concern now...and is one reason my Dr said no driving as they felt the stinosis and disk could cause an obstruction and I would have a drop attack...
SO these issues will add to symptoms u r having.
"selma"
I have very similar symptoms 5mm herniation but I have cervical stenosis and bulging discs in the cervical area and lumbar too. My NS says thats' why I have so many symptoms over this past year.
COMMUNITY LEADER
Let me use this to help u understand the herniation the way I see it...
U have a funnel....and u have 2 diff types of candy...shoe string licorice and gumdrops...if u run apiece of shoe string licorice down the funnel, it will not stop the flow of liquids as the licorice is not wide..it does not obstruct...BUT, place the short gumdrop in the opening upside down and it corks it up....
It is the width more so that the length and most drs r looking at length.....
Crowding can occur from diff things, when u fell it could have been the result of inflammation....and could no longer be an issue...but there is overcrowding from the odontoid bone having the wrong curve to it....so, u have to ask....and make sure...bcuz what is on a report is the opinion of the person writing the report...u can have 10 radiologists write the report and u might get 10 diff reports for the same MRI...so, it is best to ask the Dr to compare and what r the diff and y.
A CSF obstruction is found using a live movie like MRI of the flow...it is called a CINE MRI or Flow study.....
Yes, u want a full spine MRI to rule out syrinx;'s in each area, disk issues,and tethered cord....
No worries...ask away....
U r deff not being a pain...this is y we r here : )
"selma"
Hey Selma!
Thanks for the comment; I was certain I had read in a whole bunch of reputed sites that size of the herniation alone had little to do with the severity of the symptoms, but the neurologist I saw today acted like I was insane to think that. I'll have to look up and perhaps contact the doctors on the list featured at the link you posted, maybe they can help out in some way.
After a bad fall in January 2007, I had a CT scan performed. The MRI technician who reviewed one of my MRIs done in July 2007 looked at the CT scan, and noticed crowding at the foramen magnum. If the crowding is not mentionned on my latest MRI (mid-September 2011), does this mean it's no longer there, or does it mean they simply didn't think it was worthy to mention again? Is crowding different from the tonsilar herniation?
Also, how is a CSF obstruction detected? I am guessing I should ask my physician for a full spine MRI, is this correct? I hate having so many questions, but I'm at a loss as to what else to do. If my doctor is reluctant to schedule these tests, what would my recourse be?
Thanks again so, so much. I hope I'm not being a giant pain, hahaha.
Thanks for the comment; I was certain I had read in a whole bunch of reputed sites that size of the herniation alone had little to do with the severity of the symptoms, but the neurologist I saw today acted like I was insane to think that. I'll have to look up and perhaps contact the doctors on the list featured at the link you posted, maybe they can help out in some way.
After a bad fall in January 2007, I had a CT scan performed. The MRI technician who reviewed one of my MRIs done in July 2007 looked at the CT scan, and noticed crowding at the foramen magnum. If the crowding is not mentionned on my latest MRI (mid-September 2011), does this mean it's no longer there, or does it mean they simply didn't think it was worthy to mention again? Is crowding different from the tonsilar herniation?
Also, how is a CSF obstruction detected? I am guessing I should ask my physician for a full spine MRI, is this correct? I hate having so many questions, but I'm at a loss as to what else to do. If my doctor is reluctant to schedule these tests, what would my recourse be?
Thanks again so, so much. I hope I'm not being a giant pain, hahaha.
COMMUNITY LEADER
Hi and welcome to the Chiari forum.
This can be a very frustrating situation...as it is for most of us with chiari getting a dx....it took a yr from dx until I found my Dr....
We do have a list of Drs for Canada, not sure how close ne r to u, or if they r really good, u have to research the drs -http://www.medhelp.org/posts/Chiari-Malformation/CHIARI-DRS-LIST-CANADA/show/1270605
Size of the herniation is not the issue and if u have a CSF obstruction and overcrowding is...that and symptoms is what ur Dr should be looking at.
And most Drs only check the cervical spine for a syrinx....they can develop in the thoracic and lumbar spine as well and they should be checked....the lumbar spine while being checked for a syrinx can also help rule out tethered cord.
Let us know if u find ne Drs on the list that may be helpful
"selma"
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