Aa
It's been a while
Hello, friends. I haven't posted here since... goodness, I think 2013. I have Chiari, Syringomyelia, scoliosis, hEDS (dx 2019), and POTS. I had decompression surgery in 2012 and have been coasting since then. It's been hard. I've tried lots of medications and botox therapy for headaches and muscle tightness (that helped so much!!! But insurance denied it after a year and a half, so there we go). Happy to answer questions, if I can.
Around 2016 my husband and two daughters started having very bad health and I have picked up more and more of the slack. In 2017, my husband's health took a turn for the worse and since 2018, he has been mostly bedbound. My girls are in a similar condition, but they are continuing college (one is a freshman, and one is a sophomore now). This is all taking a huge toll on my own health, as I manage all of our health and home needs, as well as care for our 15 year old son and try to keep things as normal as possible for him. My girls and husband have Dysautonomia and ME/CFS. My girls have also been diagnosed with hEDS and fibromyalgia, and my younger daughter experiences what I believe are Chiari symptoms, possibly CCI and/or IH. However, her MRI only shows 3.5mm herniation, so they have only diagnosed her as "low lying cerebella ectopia." As we know, herniation is not the definition of Chiari. She just got updated MRIs but the radiologist provided no measurements or information, nothing about the herniation measurement, potential IH/ CCI/ AAI, jugular and carotid sheath compression, retroflexed odontoid etc. I'm wondering if anyone has any advice on how to request that information? I'm so tired of radiologists not provided this information and NL not requesting it or even looking at the images for these things. Or to see if an actual Chiari Malformation is there.
Around 2016 my husband and two daughters started having very bad health and I have picked up more and more of the slack. In 2017, my husband's health took a turn for the worse and since 2018, he has been mostly bedbound. My girls are in a similar condition, but they are continuing college (one is a freshman, and one is a sophomore now). This is all taking a huge toll on my own health, as I manage all of our health and home needs, as well as care for our 15 year old son and try to keep things as normal as possible for him. My girls and husband have Dysautonomia and ME/CFS. My girls have also been diagnosed with hEDS and fibromyalgia, and my younger daughter experiences what I believe are Chiari symptoms, possibly CCI and/or IH. However, her MRI only shows 3.5mm herniation, so they have only diagnosed her as "low lying cerebella ectopia." As we know, herniation is not the definition of Chiari. She just got updated MRIs but the radiologist provided no measurements or information, nothing about the herniation measurement, potential IH/ CCI/ AAI, jugular and carotid sheath compression, retroflexed odontoid etc. I'm wondering if anyone has any advice on how to request that information? I'm so tired of radiologists not provided this information and NL not requesting it or even looking at the images for these things. Or to see if an actual Chiari Malformation is there.
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Hi AnnieDear...Welcome back!!
Where are you located, sorry I don't remember...US or UK? That can determine how to get info. Here in the US we can request copies of the MRI and the written report at no cost to us as long as it is done when we go for the testing, if we wait and ask the Dr he will charge to make copies.
You are so right about the herniation length, and if there is a retroflexed odontoid or even a partially retroflexed one, it can cause a blockage more so then a herniation that is 13mm's but thin and an odontoid that is in place. So many things factor in and if you are not talking with a true Chiari specialist, it will affect how they perceive the condition.
Prayers to you and your family .
Where are you located, sorry I don't remember...US or UK? That can determine how to get info. Here in the US we can request copies of the MRI and the written report at no cost to us as long as it is done when we go for the testing, if we wait and ask the Dr he will charge to make copies.
You are so right about the herniation length, and if there is a retroflexed odontoid or even a partially retroflexed one, it can cause a blockage more so then a herniation that is 13mm's but thin and an odontoid that is in place. So many things factor in and if you are not talking with a true Chiari specialist, it will affect how they perceive the condition.
Prayers to you and your family .
2 Comments
Thank you, Selma! I am in the US, in FL specifically. Do you know if anyone has had any luck specifically requesting the radiologist to review the MRI for specific issues?
The radiologist generally only review what the Dr that ordered the MRI to look for....I was never told I have tethered cord because that is not what they were looking for....but sometimes it may be on the report as an incidental finding which is why I suggest you request copies of the reports as there may be more in them then you are told.
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