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Does anyone have experience/info on Chiari 'Zero'?
Hello to all in this forum :)
I'm trying to find some research or general suggestions on Chiair 'Zero' Malformation.
Please note I have NOT been diagnosed with the problem and have apparently clean MRI scans.
I'm a 31 yr old female that had an episode of aura migraine in 2008 - I had the aura with flashing lights in my right eye (first time I've ever had that although I've suffered headaches and migraines my whole life) and the entire right side of my body went numb. The numbness went off after about 20 minutes. Everyone figured I was having a migraine due to meds I was taking (which have since been stopped).
Since then the numbness came back back little by little and is now currently with me all the time - the intensity varies but it's always there. Some days it's mildly irritating and other days it is deepy painful and leaves me bed-bound. I also experience blurred vision in my right eye a few times during the day. Occasionally the numbness will 'spread' over to my left side but it's not the same as on the right, it's a much lighter numbness.
On my right side I have altered sensations, and it is usually colder than my left side. I suffer terrible migraines with the pain centering around the right temple, coupled with a stiff neck.
I have a lot of neck pain and stiffness at the back of my neck/base of my head.
I suffer from dizziness which is constant and terrible 'spaced out' feeling, a bit like I am drunk all the time.
I've had two MRIs scans and one CT scan, all completely clear with no leisons or anything abnormal. So I'm at a loss as to what is causing this problem although I think some of my symptoms fit fairly well with CM. My first neuro said migraines (we tried to treat those with beta-blockers very unsuccessfully) the second one thinks I should try acupuncture and should stop thinking about it so much!!
I also have an autoimmune thyroid problem which I've treated with various levels of meds hoping to fix the problem but it only works to a degree.
When I get over-replaced on the meds the symptoms get a lot worse and also when I tried a short course of low-dose steroids (prednisone) everything went haywire and I experienced horrible symptoms including a terrible dragging feeling. My symptoms are also worse pre-period and my thyroid doctor said it almost sounds like some sort of cerebral edema which brought me back to looking at my brain again!
Not sure if you can see in enough detail but I have my MRI scan as my avatar pic here - it's a bit blurry but shows the Posterior fossa quite well - perhaps its a little crowed?
Sorry for the long intial post but if anyone has any ideas for me I'd be really grateful!
Cindy :)
I'm trying to find some research or general suggestions on Chiair 'Zero' Malformation.
Please note I have NOT been diagnosed with the problem and have apparently clean MRI scans.
I'm a 31 yr old female that had an episode of aura migraine in 2008 - I had the aura with flashing lights in my right eye (first time I've ever had that although I've suffered headaches and migraines my whole life) and the entire right side of my body went numb. The numbness went off after about 20 minutes. Everyone figured I was having a migraine due to meds I was taking (which have since been stopped).
Since then the numbness came back back little by little and is now currently with me all the time - the intensity varies but it's always there. Some days it's mildly irritating and other days it is deepy painful and leaves me bed-bound. I also experience blurred vision in my right eye a few times during the day. Occasionally the numbness will 'spread' over to my left side but it's not the same as on the right, it's a much lighter numbness.
On my right side I have altered sensations, and it is usually colder than my left side. I suffer terrible migraines with the pain centering around the right temple, coupled with a stiff neck.
I have a lot of neck pain and stiffness at the back of my neck/base of my head.
I suffer from dizziness which is constant and terrible 'spaced out' feeling, a bit like I am drunk all the time.
I've had two MRIs scans and one CT scan, all completely clear with no leisons or anything abnormal. So I'm at a loss as to what is causing this problem although I think some of my symptoms fit fairly well with CM. My first neuro said migraines (we tried to treat those with beta-blockers very unsuccessfully) the second one thinks I should try acupuncture and should stop thinking about it so much!!
I also have an autoimmune thyroid problem which I've treated with various levels of meds hoping to fix the problem but it only works to a degree.
When I get over-replaced on the meds the symptoms get a lot worse and also when I tried a short course of low-dose steroids (prednisone) everything went haywire and I experienced horrible symptoms including a terrible dragging feeling. My symptoms are also worse pre-period and my thyroid doctor said it almost sounds like some sort of cerebral edema which brought me back to looking at my brain again!
Not sure if you can see in enough detail but I have my MRI scan as my avatar pic here - it's a bit blurry but shows the Posterior fossa quite well - perhaps its a little crowed?
Sorry for the long intial post but if anyone has any ideas for me I'd be really grateful!
Cindy :)
Shannon, glad you finally got the diagnosis. I hope the surgery in May goes well for you.
I know I have a neuro problem for sure - I just need to convince a neurologist it's not all in my head! I have found the name of a neurosurgeon in this country that I am going to write to and get his opinion.
I don't suppose you have your scans available and would show them to me? (Private message me here and I can give you my email address). I guess I would just like something to compare mine to as there's hardly any visual imagery out there for 'zero' CM.
'Momofzipperhead' - thanks for the info but infortunately I am in the UK so cannot contact Dr Sieff. Thank you anyway.
I have a few other things I am trying to look into as well as possible answers - it's all a bit confusing for my foggy brain but I know there is an answer there somewhere.
Thanks to everyone who replied to me so far - I'll keep you all updated!
Cindy :)
I know I have a neuro problem for sure - I just need to convince a neurologist it's not all in my head! I have found the name of a neurosurgeon in this country that I am going to write to and get his opinion.
I don't suppose you have your scans available and would show them to me? (Private message me here and I can give you my email address). I guess I would just like something to compare mine to as there's hardly any visual imagery out there for 'zero' CM.
'Momofzipperhead' - thanks for the info but infortunately I am in the UK so cannot contact Dr Sieff. Thank you anyway.
I have a few other things I am trying to look into as well as possible answers - it's all a bit confusing for my foggy brain but I know there is an answer there somewhere.
Thanks to everyone who replied to me so far - I'll keep you all updated!
Cindy :)
My daughter has Chiari Zero and Hypo Plastic Posterior Fossa. It took forever to get diagnosed (10 years). I reccommend you get in touch with Dr. Michael Sieff at the Western Regional Brain and Spine Institute in Las Vegas 702-737-1948.
Hi Cindy! I guess technically I have Chiari 0, but i just call it chiari. My herniation is 1 to 4 mm depending on which mri slice you look at, but i have overcrowding and csf blockage. I went through 4 neurologists and 2 NS to finally find my dr now who is a chiari specialist and will be doing my surgery in may. It seems just from what i have read that its easier for us Americans to find drs. If we dont like one we just go somewhere else! But even then, it is not easy to find drs who truly understand this crazy thing called chiari! That being said you have to fight for yourself and be your own activate! Like the others said i dont know if you have chiari or not but you definately have something neurological going on! Blessings ~ Shannon
Rod, thanks for your reply - I think you're right. I have two sets of scans so sending one off won't cause any harm - and provide answers, who knows!
Carolyn - Thanks so much for the suggestion. I've read SO much info on fibro/CFS as I was misdiagnosed with it but more and more I am seeing people recovering from their symptoms with either thyroid or a combination of thyroid and adrenal support (actually flank pain is a big flag to adrenal problems so please bear that in mind).
Selma - I guess it's worth noting that my neuro actually commented to me that I was very flexible and bendy and look like I 'may have hypermobility' - I've read about the connection between Hashi's/EDS/Chiari quite a lot - would be interesting to know which one (if any) is the trigger.
Do any of you guys have any experience of being on steroids for anything? It made my symptoms much worse and caused the numbness to spread to my left side - I'm sure that's significant.
Cindy :)
Carolyn - Thanks so much for the suggestion. I've read SO much info on fibro/CFS as I was misdiagnosed with it but more and more I am seeing people recovering from their symptoms with either thyroid or a combination of thyroid and adrenal support (actually flank pain is a big flag to adrenal problems so please bear that in mind).
Selma - I guess it's worth noting that my neuro actually commented to me that I was very flexible and bendy and look like I 'may have hypermobility' - I've read about the connection between Hashi's/EDS/Chiari quite a lot - would be interesting to know which one (if any) is the trigger.
Do any of you guys have any experience of being on steroids for anything? It made my symptoms much worse and caused the numbness to spread to my left side - I'm sure that's significant.
Cindy :)
COMMUNITY LEADER
http://aolsearch.aol.com/aol/search?invocationType=wscreen-searchboxhtml&query=chiari+and+fibro&do=Search
http://www.beatfibroandfatigue.com/anxiety.html
http://www.beatfibroandfatigue.com/anxiety.html
Interesting..thanks Selma...Do you know what stuck out for me? Is that flank pain is listed under FM...but not for Chiari...like what we were talking about on the other thread (I think Lori's). I really truly do think the two are connected somehow..with the rashes too being caused by FM....
If you find that study..let me know!
Carolyn
If you find that study..let me know!
Carolyn
COMMUNITY LEADER
Carolyn many times chiari has been mis dx'd as Fibro....
http://www.nfra.net/Symchart.htm
If u look at the chart u can understand y this could happen....same goes for CFS.....I wish I could find the study......
Plus, add in the EDS and those symptoms...they r all so similar.
http://www.nfra.net/Symchart.htm
If u look at the chart u can understand y this could happen....same goes for CFS.....I wish I could find the study......
Plus, add in the EDS and those symptoms...they r all so similar.
Well I have to say that I am glad it's not HE...that one sounded pretty scary..which is why I was hesitant to bring it up! I am dealing with the same issues that way...trying to sort out what could be from Hashi's and what is still damage from the CM (I had surgery 3 months ago).
Recently I came across a site that listed symptoms of fibromyalgia...and I was really shocked on how close a lot of the symptoms were to what we experience with CM. If you want to take a look the site is:
http://abarnabas.tripod.com/indexfibrosymptoms.html
It is a list compared by actual FM sufferers...kind of like our unofficial list here. I realize it may not pertain to you but like Ray said there is definitley something neurological going on with you...and this was what came to my head.
I remember the intense frustration as well as the fear that I dealt with on a daily basis while I was trying to get dx. I really hope that you find some answers soon and don't let any drs belittle your concerns.
Good luck
Carolyn
Recently I came across a site that listed symptoms of fibromyalgia...and I was really shocked on how close a lot of the symptoms were to what we experience with CM. If you want to take a look the site is:
http://abarnabas.tripod.com/indexfibrosymptoms.html
It is a list compared by actual FM sufferers...kind of like our unofficial list here. I realize it may not pertain to you but like Ray said there is definitley something neurological going on with you...and this was what came to my head.
I remember the intense frustration as well as the fear that I dealt with on a daily basis while I was trying to get dx. I really hope that you find some answers soon and don't let any drs belittle your concerns.
Good luck
Carolyn
Hi Cindy, send your scans along with a note of your medical history, you have nothing to loose. If you don't already have a copy of your medical records then it would be wise to get them.
It may not be CM but there is some neurological abnormality and you need answers not a pat on the head....
Ray
It may not be CM but there is some neurological abnormality and you need answers not a pat on the head....
Ray
Rod,
Thanks for the reply :)
I am sort of under the care of a neurologist that has reviewed my scans and talked to me about my symptoms but he's explained it as a 'nerve signal' problem in my brain because I had a scare with the initial migraine (I thought I was having a stroke) and that if I could stop thinking about it all the time it would go away.
I found this approach quite offensive as it's not just an annoying problem I have, it's actually debilitating on a daily basis as I cannot feel pressure correctly on the right side (so I can't learn to drive or use my sewing machine, I am a textile designer so that pretty much means I can't do my work), and when the pain flairs up all I can do is go to bed and stay there with pain killers that pretty much knock me out.
I get crawling sensations on my face and occasionally on my body and my memory is very impaired - I don't trust myself to remember anything important and often find myself putting things in the wrong place and doing stupid things that could be dangerous (thought this was all my thyroid as it's a classic symptom but it won't resolve).
I've never had any further testing such as nerve conduction or spinal MRI.
I have considered sending a set of the scans to a neurosurgeon that I have looked up in this country that deals with CM but I don't know if that would simply be a waste of time.
Thanks :)
Thanks for the reply :)
I am sort of under the care of a neurologist that has reviewed my scans and talked to me about my symptoms but he's explained it as a 'nerve signal' problem in my brain because I had a scare with the initial migraine (I thought I was having a stroke) and that if I could stop thinking about it all the time it would go away.
I found this approach quite offensive as it's not just an annoying problem I have, it's actually debilitating on a daily basis as I cannot feel pressure correctly on the right side (so I can't learn to drive or use my sewing machine, I am a textile designer so that pretty much means I can't do my work), and when the pain flairs up all I can do is go to bed and stay there with pain killers that pretty much knock me out.
I get crawling sensations on my face and occasionally on my body and my memory is very impaired - I don't trust myself to remember anything important and often find myself putting things in the wrong place and doing stupid things that could be dangerous (thought this was all my thyroid as it's a classic symptom but it won't resolve).
I've never had any further testing such as nerve conduction or spinal MRI.
I have considered sending a set of the scans to a neurosurgeon that I have looked up in this country that deals with CM but I don't know if that would simply be a waste of time.
Thanks :)
Carolyn,
Thanks for the reply :)
I have Hashimoto's - I've looked into Hashimoto's Encephalitis. I've discussed it with my thyroid doctor as it does fit a LOT of my symptoms (including the right sided problems) but I cannot tolerate steroids which is the key in treating it so that sorta leaves me high and dry there!
He also presumes if I did have HE that my neuro symptoms would actually be worse than they are, ie. I have altered sensations etc but no actually weakness through nerve damage - although I feel weaker on the right and if I have to do repetative movements with my right side the muscles give out very quickly. I have lost the fine motor skills on the right too.
I appreciate your comment on my scan - I know no one here are doctors but I've found quite often the patients and people that live day-to-day with the problems know a lot more than the docs!
Thanks :)
Thanks for the reply :)
I have Hashimoto's - I've looked into Hashimoto's Encephalitis. I've discussed it with my thyroid doctor as it does fit a LOT of my symptoms (including the right sided problems) but I cannot tolerate steroids which is the key in treating it so that sorta leaves me high and dry there!
He also presumes if I did have HE that my neuro symptoms would actually be worse than they are, ie. I have altered sensations etc but no actually weakness through nerve damage - although I feel weaker on the right and if I have to do repetative movements with my right side the muscles give out very quickly. I have lost the fine motor skills on the right too.
I appreciate your comment on my scan - I know no one here are doctors but I've found quite often the patients and people that live day-to-day with the problems know a lot more than the docs!
Thanks :)
Selma,
Thank you for the welcome and the wise words!
That MRI was taken in October 2008 and I had a further one in June 2009 - to my untrained eye they didn't look any different and I can clearly see I definitely don't have classic CM.
I don't have the reports for the MRIs - we don't normally have any of the reports in this country and it's unusual to have the scans to take home but I was given these as they were normal and of no further use to the neuros.
I've been on the thyroid meds for a year and for most of that time I've been convinced all my symptoms are down to the thyroid but a lot of the scarier stuff isn't resolving.
I've been ill for a long time now - I was misdiagnosed with CFS for about 2 years before I realised I actually had a thyroid problem and am now being treated by an excellent thyroid specialist but we're both frustrated as my symptoms are not resovling as they should.
Thanks for taking the time to reply to me :)
Thank you for the welcome and the wise words!
That MRI was taken in October 2008 and I had a further one in June 2009 - to my untrained eye they didn't look any different and I can clearly see I definitely don't have classic CM.
I don't have the reports for the MRIs - we don't normally have any of the reports in this country and it's unusual to have the scans to take home but I was given these as they were normal and of no further use to the neuros.
I've been on the thyroid meds for a year and for most of that time I've been convinced all my symptoms are down to the thyroid but a lot of the scarier stuff isn't resolving.
I've been ill for a long time now - I was misdiagnosed with CFS for about 2 years before I realised I actually had a thyroid problem and am now being treated by an excellent thyroid specialist but we're both frustrated as my symptoms are not resovling as they should.
Thanks for taking the time to reply to me :)
Hi Cindy, are you under the care of a Neurologist or Neurosurgeon. Radiologists sometimes don't recognise CM so the best person to treat this is a NS with experience of CM. Have you had a full spinal MRI & nerve conduction study ? I know with the NHS you will have to fight to get these tests done but you need to get answers.
Ray
Ray
Hi Cindy!
When you talk about thyroid auto immune disease do you mean Hashimotos or Graves? I was just dx with Hashi's and when I was doing some research and I came across something called Hashimotos encephalitis. Please note this is VERY rare but can occur in people that have Hashi's. It is even more rare than CM...so that should put it in perspective. The only reason I mention it is that you mentioned cerebral edema...
I took a look at your MRI and I couldn't see the same type of crowding that I saw on mine...but it is fuzzy and I'm not a doctor!
I would take Selma's advice and try sending it to a Chiari specialist..
I really hope that you get figured out soon...I am sorry that you are going through such a rough time!
Carolyn
When you talk about thyroid auto immune disease do you mean Hashimotos or Graves? I was just dx with Hashi's and when I was doing some research and I came across something called Hashimotos encephalitis. Please note this is VERY rare but can occur in people that have Hashi's. It is even more rare than CM...so that should put it in perspective. The only reason I mention it is that you mentioned cerebral edema...
I took a look at your MRI and I couldn't see the same type of crowding that I saw on mine...but it is fuzzy and I'm not a doctor!
I would take Selma's advice and try sending it to a Chiari specialist..
I really hope that you get figured out soon...I am sorry that you are going through such a rough time!
Carolyn
COMMUNITY LEADER
HI and welcome to the Chiari forum Cindy !!
Many of us have been told our brain MRI's were clear or "normal", only to find that the NS does not feel chiari can cause issues even at 5mm or larger...bcuz it is congenital and u had it ur whole life with no issues so far....load of crap...lol...
Neway not all chiari specialists agree on the chiari 0 dx...but there r enuff that can tell u that it is not the size of herniation that is the issue it is CSF blockage and overcrowding....the symptoms u describe do fit chiari, but also fit other conditions as well.....
I did look at ur MRI...and I can not say if it is or isn't at this point....how old a MRI is it?....do u have the reports as well as the MRI's?
I would suggest u make copies of ur MRI disks and sent them to a true chiari specialist....being in the UK can make this a bit more diff.....and all depends on if u can/will travel outside for treatment.It appears we do have more chiari dr in the US and we have a diff time locating a dr that understands this condition, let alone chairi 0.....
So, I guess what I am trying to say is get a second opinion....some of the drs in the US will review the MRI's for a nominal fee.....we do have a list of drs thread.....
I pray u find the answers so u get relief, but I pray u do not have this condition.
"selma"
Many of us have been told our brain MRI's were clear or "normal", only to find that the NS does not feel chiari can cause issues even at 5mm or larger...bcuz it is congenital and u had it ur whole life with no issues so far....load of crap...lol...
Neway not all chiari specialists agree on the chiari 0 dx...but there r enuff that can tell u that it is not the size of herniation that is the issue it is CSF blockage and overcrowding....the symptoms u describe do fit chiari, but also fit other conditions as well.....
I did look at ur MRI...and I can not say if it is or isn't at this point....how old a MRI is it?....do u have the reports as well as the MRI's?
I would suggest u make copies of ur MRI disks and sent them to a true chiari specialist....being in the UK can make this a bit more diff.....and all depends on if u can/will travel outside for treatment.It appears we do have more chiari dr in the US and we have a diff time locating a dr that understands this condition, let alone chairi 0.....
So, I guess what I am trying to say is get a second opinion....some of the drs in the US will review the MRI's for a nominal fee.....we do have a list of drs thread.....
I pray u find the answers so u get relief, but I pray u do not have this condition.
"selma"
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