Aa
So many questions
I want to kno how fast does Chiari progress? Is it months or years? Can it kill you if you don't have surgery? And why do they cauterize the herniated part do we need that?
I was just diagnosed on the 10th with Chiari I, with syringomyelia. It was found on accident. I have already gotten a second opinion as to diagnosis. Was hospitalized for pain control. Met with the NS and specialist the following day. Awaiting a surgery date. I have a 7.5mm herination, crazy pain, motor deficits(mild in my opinion), neurological deficits (also mild but bothersome @ times), respiratory issues (mild IMO), my eyes feel funny, my head feels to heavy for my body so i tend to hold it down which hurts, and choking on food/liquid sometimes.
I'm a newly wed and have a new baby so this is really hard to digest. Not to mention, IM TERIFIED of them cutting on my head and spine!
I was just diagnosed on the 10th with Chiari I, with syringomyelia. It was found on accident. I have already gotten a second opinion as to diagnosis. Was hospitalized for pain control. Met with the NS and specialist the following day. Awaiting a surgery date. I have a 7.5mm herination, crazy pain, motor deficits(mild in my opinion), neurological deficits (also mild but bothersome @ times), respiratory issues (mild IMO), my eyes feel funny, my head feels to heavy for my body so i tend to hold it down which hurts, and choking on food/liquid sometimes.
I'm a newly wed and have a new baby so this is really hard to digest. Not to mention, IM TERIFIED of them cutting on my head and spine!
COMMUNITY LEADER
Oh my goodness....u sure have ur fill.....so ur syrinx was the result of ur injury.....
Did ur chiari specialist suggest a couple options as to how to proceed?
I would imagine if u have a syrinx and a CSF obstruction at the disk level injury, that is where u need to start....taking care of it may also relieve many of ur symptoms as ne CSF obstruction will cause symptoms and u may feel much better and able to go for a while b4 u need more surgery.....
I pray u get this sorted out soon
"selma"
PS- Is this a WC claim then too?
Selma, I have had neck and back problems since I was in an automobile accident in April 2006. I'm wondering if the continuous / chronic pain I have experienced for so long has made my Chiari worse. I had a MRI of my head yesterday and will have EMG's on both arms tomorrow.
Thank you.
Thank you.
COMMUNITY LEADER
It is possible it added to ur pain issues, and I am sure the accident triggered ur chiari symptoms to flare...with that as a catalyst I am sure factors in to all of the symptoms u r dealing with.
Ne continuous pain will make us all feel worse overall.....if pain itself can make ur chiari worse, I am not sure...but it will not help the way u feel.The jarring from the accident could have shifted the tonsils down further then they were b4 the accident....
Good Luck with ur EMG tomorrow...
"selma"
The lumbar injury is WC. The syrinx is not it is in my cervical region. Yeah. It's a lot to sort out. I'm a bit overwhelmed.
Selma, in response to your original question to deatrapurplerm about why surgery was suggested, might it be because she had a syrinx? my NS said that anytime a syrinx is present, surgery is recommended. my symptoms are very mild (no deficits that I can recall.. just the occasional headache) but i am still going ahead with the surgery.
COMMUNITY LEADER
Hi....yes, most NS's will suggest surgery when a syrinx is present, but some also will look at the size of the syrinx and symptoms...and it was her description of them being mild, that made me wonder....
But most surgery is done when there is an obstruction to avoid the formation of a syrinx....
And it was difficult to know if her syrinx was the result of the disks or chiari, so which surgery will actually have an effect.....
She has so much going on and as she said she is still trying to sort it all out...
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Hi and welcome to the Chiari forum.
I am wondering y u r being scheduled for surgery is u feel ur symptoms r mild?....DO u know if u have a CSF obstruction?
And if not, then I would ask about waiting and being monitored....especially with a new baby...goodness, u need to be able to lift the baby and will not be able to post op...really should not b4, but if u have no ill effects then just do so with care.
The swallowing issues is a concern...and could be y ur Drs want to do surgery...as for the cauterization of the tonsils, they do that to make them retract out of the way...they chip away some bone of the vertebra to make room and doing both allows that they do not have to take away too much bone...other wise u could end up with cerebral ptosis....
We all respond to this surgery differently...and many have long waited for a dx...with severe symptoms....
I would suggest u get a few opinions and be sure they r from true chiari specialists....not just a NS that is top in his field....that is not the same thing...u want the best and u want them to rule out all related conditions B4 u have surgery like tethered cord, syringomyelia, Ehlers-Danlos, sleep apnea, ICP, PTC.....
As for chiari causing death...most of what u read on line u will find that it will not...however, it is possible if left untreated that it could indeed lead to death...we have lost many to chiari related deaths....and u have to keep in mind this surgery is a major surgery, it is not a simple procedure....
I am not saying since u have chiari u may die, what I am saying is some develop other issues and they can often cause death...and again if left untreated it could lead to paralysis or death .
DO get a few opinions...find out if u have a CSF obstruction and other related conditions b4 u have surgery.
"selma"