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csf flow
Can anyone explain to me, if it is possible for CSF flow to be normal while laying down, but show blockage while being upright. As well as, can it change.. like when I'm extremely dizzy/feel like I'm passing out/ and various other problems.. can it have blockage then, but flow normally when I actually do feel good. I feel fine while laying down with my head straight.. but sitting/standing/tilting my head down or up.. I end up feeling really, really bad. Is it possible to change like that?
My herniation is 14mm and the tonsils are shaped like upside down triangles, in which the point is down and the wide part on top. Weird how they know that.....Dana
I know SelmaS will agree with me here...it's not only the length of the herniation, but the SHAPE of it relative to the size of your Posterior Fossa (back/base of your skull).
You really need a Chiari specialist for a second opinion. My herniation length was only 6 mm, but my tonsils were "peg shaped" and stuffed down through the foramen magnum. To add to that, I have a retroflexed odontoid process and a connective tissue disorder. I'm now 7 weeks post op decompression and fusion c1,c2....and feeling much better....no more headaches or sleep issues. Don't hesitate to advocate for yourself...no one knows your body better than you! :)
You really need a Chiari specialist for a second opinion. My herniation length was only 6 mm, but my tonsils were "peg shaped" and stuffed down through the foramen magnum. To add to that, I have a retroflexed odontoid process and a connective tissue disorder. I'm now 7 weeks post op decompression and fusion c1,c2....and feeling much better....no more headaches or sleep issues. Don't hesitate to advocate for yourself...no one knows your body better than you! :)
COMMUNITY LEADER
Oh ok...well do keep us posted so we know what is going on with u....
I know it is hard to get new info in person or over the phone it is hard to get it all straight....
Keep us posted : )
Oh.. LOL.. my brain died I forgot where I was going with that...
I was saying my pcp ordered them, and she is referring me to a NL that is a sleep specialist to explain to me about the CPAP and what he thinks. She just said I had apnea episodes 139 times, and that each one actually aroused me from sleep. I also had brain wave problems but my brain isn't working well today, so I kinda fogged up the phone conversation mostly about what she was saying.. that's all I really understood. I see her Monday, so maybe she can explain it better then.
I was saying my pcp ordered them, and she is referring me to a NL that is a sleep specialist to explain to me about the CPAP and what he thinks. She just said I had apnea episodes 139 times, and that each one actually aroused me from sleep. I also had brain wave problems but my brain isn't working well today, so I kinda fogged up the phone conversation mostly about what she was saying.. that's all I really understood. I see her Monday, so maybe she can explain it better then.
My pcp ordered the test for me. She's the only one that believes my problems are from my Chiari. She has been ordering all my Chiari related tests because all the Neurosurgeons here wont bother to really test me since I'm only 7mm herniated ;(. I'm currently waiting on a NS to take me back now
And I know they're going to give me the same story about how I'm normal.. and 7mm isn't enough to say I have Chiari. Even though my mri's plainly state, "Consistent with Chiari I abnormality" on them all.. but hey always disagree >_<
And I know they're going to give me the same story about how I'm normal.. and 7mm isn't enough to say I have Chiari. Even though my mri's plainly state, "Consistent with Chiari I abnormality" on them all.. but hey always disagree >_<
COMMUNITY LEADER
Well there r diff types...Obstructive which u have and Central, and a combo of the 2 Complex.
It happens to people with lax muscles as well....smokers, etc...but yes it is a Chiari thing....as u may have EDS which is related to cause the lax ness of the muscles....and or to the structure that holds the muscle.
Did they suggest u sleep on an incline? Or a C Pap?
Chiari affects all aspects of how we function, as it affects our spinal cord and brain stem...that is how it can be possible...
I'm just having issues with my NS mostly. I did however get my sleep apnea study back. I do have Obstructive sleep apnea. They indicated on there they were shocked I had that, because it's mostly seen in older people and overweight. (26yo 5'8" 110lbs.) So that is a Chiari thing? It can give you sleep apnea? And if so, how? What makes Chiari give you that?
COMMUNITY LEADER
Absolutely...the same reason a herniation can appear larger when upright, gravity actually pulls down on the herniation and it can appear larger when standing, so, if larger when standing it may block CSF then too.
Chiari specialists factor that into what they see on MRI's and CINE MRI's....and listen to the symptoms u r having to determine what is really going on....
It could also indicate a retroflexed odontoid too....diff positions will have an effect. A kink in the brain stem and then u move ur head it can shift things around and cause a blockage that may not have been there in a diff position.
This is y they will have us get xrays of flexion to see what all is going on in those diff positions. This is not something we all need to have done, but if u r having issues ask about it,
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