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Chiari Aquired rather than heredity
Hello,
I am so glad that I found this forum. I have been reading through everyones posts and crying, laughing and learning.
From what I can remember I had never experienced a symptom of Chiari growing up. The first time I noticecd a sympotom I was serving in Iraq. I was in an IED (Improvised Explosive Device) aka Road Side Bomb attack. I was standing up outside the turret when the explosion happened and I know I was thrown around quite a bit but donn't remember a whole lot.
I was in several other explosions during my deployment. But after the first one I started noticing head aches and personality changes along with other physical symptons.
Upon returning home my symptons have seemed to get to worse. I feel fatigued all the time. My arms are sometimes very weak adn fall asleep quickly, My head and neck have that sensation like you get when you lick a 9 volt battery every 5 to 20 minutes unless I am lying completely still. I cry for no reason, feel dizzy, eyes blurry, extremely sensative to light, have a very hard time exerting myself because I get severe headaches and fatigue quickly.
I was finally diagnosed with a 3mm Chiari Malformation type 1 after 2 CT Scans and 1 MRI in March. The radiologist stated that this was not causing my symptoms and so did my primary care. He referred me to a nueroligst who prescribed nueroton which made me gain weight. Then went back for a carpal tunnel test and he said I did not have carpul tunnel syndrome. I am still in the military so the 20 pounds I gained from Nuerotin was not an option and he switched me to Oxcarbaxepine which worked amazingly until about 5 days ago and all my symptons have come back.
My questions are has anyone been able to show on MRIs that they acquired this Chiari Malformation after a tramatic incident.
Also, what treatements are out there. My nuerologist has brough up surgery several times and then says but most likely will make you worse or cause a growth in your spinal column.
Thank you for reading and I really appreciate any and all replys to the this post.
Take care
Cheri
I am so glad that I found this forum. I have been reading through everyones posts and crying, laughing and learning.
From what I can remember I had never experienced a symptom of Chiari growing up. The first time I noticecd a sympotom I was serving in Iraq. I was in an IED (Improvised Explosive Device) aka Road Side Bomb attack. I was standing up outside the turret when the explosion happened and I know I was thrown around quite a bit but donn't remember a whole lot.
I was in several other explosions during my deployment. But after the first one I started noticing head aches and personality changes along with other physical symptons.
Upon returning home my symptons have seemed to get to worse. I feel fatigued all the time. My arms are sometimes very weak adn fall asleep quickly, My head and neck have that sensation like you get when you lick a 9 volt battery every 5 to 20 minutes unless I am lying completely still. I cry for no reason, feel dizzy, eyes blurry, extremely sensative to light, have a very hard time exerting myself because I get severe headaches and fatigue quickly.
I was finally diagnosed with a 3mm Chiari Malformation type 1 after 2 CT Scans and 1 MRI in March. The radiologist stated that this was not causing my symptoms and so did my primary care. He referred me to a nueroligst who prescribed nueroton which made me gain weight. Then went back for a carpal tunnel test and he said I did not have carpul tunnel syndrome. I am still in the military so the 20 pounds I gained from Nuerotin was not an option and he switched me to Oxcarbaxepine which worked amazingly until about 5 days ago and all my symptons have come back.
My questions are has anyone been able to show on MRIs that they acquired this Chiari Malformation after a tramatic incident.
Also, what treatements are out there. My nuerologist has brough up surgery several times and then says but most likely will make you worse or cause a growth in your spinal column.
Thank you for reading and I really appreciate any and all replys to the this post.
Take care
Cheri
COMMUNITY LEADER
Hi...have u checked out our list?
http://www.medhelp.org/posts/Chiari-Malformation/LIST-OF-CHIARI-SPECIALISTS/show/1293483
http://www.medhelp.org/posts/Chiari-Malformation/LIST-OF-CHIARI-SPECIALISTS/show/1293483
Thank you everyone. I need to get a second opinion. I don't know where a good place to go would be. I would even pay out of pocket to talk to someone who is educated on this.
Well thank you again for all the information and personal experience.
Well thank you again for all the information and personal experience.
Like others have said, your Chiari may have been asymptomatic until the jarring of the explosions, etc made it worse and brought on symptoms. For me, I only had occasional headaches and neck pain, plus exertion induced headaches until a slip and fall accident nearly a year ago, that resulted in a whiplash. Since then, the headaches have become a daily thing, and neurological symptoms cropped up. My pcp, rheumatolgist, and I all were pretty sure I had MS... until the MRI showed no lesions and a 4-5mm Chiari.
My neurologist was useless; said the Chiari couldn't possibly be the cause of my symptoms, that I just had migraines. Since when do migraines cause 24/7 vertigo, dizziness, nausea, paresthesia, etc even when you don't have a headache? He said I showed no signs of intracranial pressure. 2 weeks later, my annual visit to my Opthamologist resulted in her finding rt optic nerve swelling from increased intracranial pressure, and she referred me to a neurosurgeon. I've been stuck in a referral and insurance red tape nightmare ever since, and have yet to see the neurolsurgeon. Ugh.
The size of the herniation has nothing to do with symptoms. Overcrowding and csf flow issues are the problem. The herniation into the spinal cord is a symptom; not the problem. This is something most neurologist's are miseducated on.
Good luck. You need a CINE MRI to check for csf blockage. So do I. Lol! I hope you can find a good, educated dr with your military coverage.
TTFN,
Jenn
My neurologist was useless; said the Chiari couldn't possibly be the cause of my symptoms, that I just had migraines. Since when do migraines cause 24/7 vertigo, dizziness, nausea, paresthesia, etc even when you don't have a headache? He said I showed no signs of intracranial pressure. 2 weeks later, my annual visit to my Opthamologist resulted in her finding rt optic nerve swelling from increased intracranial pressure, and she referred me to a neurosurgeon. I've been stuck in a referral and insurance red tape nightmare ever since, and have yet to see the neurolsurgeon. Ugh.
The size of the herniation has nothing to do with symptoms. Overcrowding and csf flow issues are the problem. The herniation into the spinal cord is a symptom; not the problem. This is something most neurologist's are miseducated on.
Good luck. You need a CINE MRI to check for csf blockage. So do I. Lol! I hope you can find a good, educated dr with your military coverage.
TTFN,
Jenn
It may be possible the accident triggered the chiari like mine did I have quite a few websites that I have read that supports this and my NS said the same thing. You may have born with the possibilty of chiari being a problem but that it was triggered by something along the way And if I am not mistaken I ran across a few that had the aquired argument too. I just googled chiari and accidents and followed the links. Sorry I don't remember the exact sites....... I am only a 4mm herniation and trust me it causes anough trouble for such a small things. I think it is the width not the length that matters as well as over crowding and blockage. Someone could have a hair thin 15mm causing no trouble and the next person could have the entire foramen megnum blocked by a 2mm. Well the small one would cause more trouble.
I do wish you the best of luck you deserve not to suffer. I hope u can find help
I do wish you the best of luck you deserve not to suffer. I hope u can find help
COMMUNITY LEADER
Hi and welcome to the Chiari forum.
To get straight to ur question of acquired or congenital....u need a true chiari specialist as Carolyn mentioned.
The herniation being there b4 or after the injury is not what will determine this, but, if ur skull is malformed...the blast u were in just may have triggered symptoms....many chiarians do not suffer symptoms unless an incident like a MVA , a fall etc may cause it to be active, and then there r those that never have symptoms.
The acquired chiari generally comes in conjunction with something else after an injury...like hydrocephalus....a syrinx, or tethered cord caused by scar tissue from an injury.
Being in the military I am not sure if u can get copies of ur MRI's and reports and or if u will be able to see a dr outside of what they offer.
And how long since u were in the blast?
Have u had full spine MRI's?
"selma"
To get straight to ur question of acquired or congenital....u need a true chiari specialist as Carolyn mentioned.
The herniation being there b4 or after the injury is not what will determine this, but, if ur skull is malformed...the blast u were in just may have triggered symptoms....many chiarians do not suffer symptoms unless an incident like a MVA , a fall etc may cause it to be active, and then there r those that never have symptoms.
The acquired chiari generally comes in conjunction with something else after an injury...like hydrocephalus....a syrinx, or tethered cord caused by scar tissue from an injury.
Being in the military I am not sure if u can get copies of ur MRI's and reports and or if u will be able to see a dr outside of what they offer.
And how long since u were in the blast?
Have u had full spine MRI's?
"selma"
Hi,
First of all, thank you for serving our country and fighting for our freedom!
I think what Carolyn says is correct. Find someone else who understands this. I also didn't start having any bad symptoms until I had mechanical traction. After that, I have been on constant pain. The radiologist missed my Chiari and after another brain MRI it was noted that I had an 8mm Chiari. To this day I still believe that the traction caused my Chiari to become symptomatic. I am trying to make decisions about surgery now after going all over the place for many opinions. I wish you the best and keep on searching for that right doctor.
First of all, thank you for serving our country and fighting for our freedom!
I think what Carolyn says is correct. Find someone else who understands this. I also didn't start having any bad symptoms until I had mechanical traction. After that, I have been on constant pain. The radiologist missed my Chiari and after another brain MRI it was noted that I had an 8mm Chiari. To this day I still believe that the traction caused my Chiari to become symptomatic. I am trying to make decisions about surgery now after going all over the place for many opinions. I wish you the best and keep on searching for that right doctor.
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First off, from what you have said about this NL, it doesn't sound like he is that educated in Chiari. Just a word of advice from someone who has been through it all, I got no help from NL at all, either before or after the surgery. I would have been left to keep getting worse if I hadn't finally got my NS to look over my scans. A knowledgeable specialist will know that they are looking for much more than a herniation size, they are looking for overcrowding that will result in CSF blockage. As far as the NL predictions for surgery, I really would get an opinion from someone who is actually a surgeon as it is in their field.
The way you describe your symptoms are very close to the way mine started. The pain in your neck is exactly how it started for me. I used to wake up at night not being able to sleep b/c of the pain. Then it traveled to my arms, legs etc..all the time I was being put off by my drs telling me it was just anxiety. If there is anything that I could pass on to someone else, it is to not ignore this and to be seen by a Chiari specialist as soon as you can. Don't let this go or let a Dr minimize it, for it is you that suffers in the end.
As for the question of whether it is acquired, it could be but unless you have any prior MRI's that didn't show a herniation, then it is hard to know. Most of us are born with the skull malformation but for most of us, it doesn't start to cause symptoms until we have some kind of change (cervical spine changes, pregnancies, injuries etc.) So it could be very possible that you always had it but it became symptomatic after you were injured.
Good luck to you and I hope you get a 2nd opinion quickly!
Carolyn