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Chiari Malformatation?


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Does anyone on here have that? Can someone explain some of it to me. I've done the research but I'm really not sure if it applies to my situation. On my other thread I explained how I had reverse cervical lordosis (my neck lost it's natural curve and than started to curve the opposite way), I had a degenerative disc, I had two torn ligaments in my neck that healed from chiropractor adjustments, arthritis in my neck, pinched nerves, and (the part that is giving me the dysautonomia) my spinal cord is putting a lot of pressure on my brainstem/ medulla oblongata and this is not allowing it to function properly. I've been going to the chiropractor for 2.5 months and it got rid of my migraines at first but now they come back sometimes after an adjustment. It got rid of my sensitivity to light and sound, nerve pain, and relieved a lot of neck pain for me, but that's it. I'm not getting better.Don't get me wrong, I'm glad I got the adjustments because it has got rid of my pain (both the awful neck pain I was in and the awful nerve pain I was experiencing and for the most part the migraines don't show themselves like they use to.) My nervous system didn't all of a sudden start working again though.

Anyways what do you think of a chiari malformation. I have almost all of the symptoms (although some overlap with dysautonomia.) How do I know what could be a chiari malformation and what is just my neck being screwed up. Is there any connection with the condition my neck is in and a chiari malformation and x-rays don't show it correct? Do I need to get an MRI? I know there is information on here about it but I want to specifically know if there's a chance that could be my situation or if I'm just freaking myself out. I don't know the connection between my neck being the way it is, my dysautonomia, and a chiari malformation. I do know that the pressure on my medulla oblongata/ brain stem is responsible for about 85% of my symptoms ( I don't know where the other 15% is) but I don't know if part of that pressure could be related to a chiari malformation. Please explain. I probably sound like an idiot because there's really not that much information on it and everyone knows with dysautonomia that we have a laundry list of symptoms that can fit many things. Any advice would be appreciated. Thankyou.

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There's no way for us to tell you if you have a possible chiari malformation. However, the gold standard for diagnosing a chiari malformation is an upright mri....not a regular supine mri. Gravity affects how your brain sits in your skull so laying down vs. Sitting up for the mri shows completely different images of your brain, etc. If you are concerned you might have chiari, it's important to have an upright mri and also have a neurosurgeon that specializes in chiarireview the films.

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I was just curious if there was a correlation between that and my neck or if they are completely unrelated. I know that a chiari can cause pressure to be put on the brainstem (which I have) but I don't know if that's a chiari malformation or if that's just my neck like they were saying. Thankyou for telling me about the MRI stuff though. I will def. keep that in mind if my doctor asks for an MRI for that.

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Please someone. Give me anything. I am soooo freaked out right now. I'm debating whether or not to stop the chiropractor until I know for sure. I don't want to make things worse,but I don't know if I'm just overreacting

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Hello. Have you been having problems with adjustments? I know in the past having adjustments on my neck made me very dizzy and increased my pain, so I stopped. It sounds like though you have been feeling a little better with adjustments...

Hmm... You might try going over to the Chiari boards (Ben's Friends) and asking people who already have it what they think.

In the meantime, try to do something to calm down if you can. Anxiety can make symptoms worse.

Best wishes.

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I thought so at first but now every time I go it makes my migraines come back. With the exception of less neck pain, and no nerve pain I'm just as sick as I was 3 months ago now that the migraines have come back. I feel like the short term benefits I started to get are starting to come back too (like the migraines going away.) We decided to stop the adjustments because we're strapped for money and it's not even helping me, and if there's a possibility of chiari It could be dangerous to go. Right where I feel the pressure is where the herniated tonsils are in chiari (I looked up pictures and diagrams.) Thank you. I will look up those Chiari boards.

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I would see a neurologist and get an MRI to be sure. That's really the only way to know. They can also tell you for sure if the curve in your neck has straightened out. I'm extremely skeptical of chiros and have read that they will manipulate xrays (even show you an xray that's not even yours) to make you think that you have this problem. I have degenerative discs and was considering a chiro when I found out but after reading about the chance of stroke after neck manipulation, I decided against it. Good luck to you!!

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I don't think they were necessarily trying to screw me over, but I do wonder if a lot of what I'm actually experiencing is chiari. So much of what they were telling me overlaps with Chiari only the adjustments really aren't helping me anymore. Everything that started to go away started back up again which makes no sense considering my neck is slowly going back in place. It feels like I should be getting better than, unless something like a Chiari Malformation is going on. I think chiropractors should run MRI's too. It's too risky to do chiropractor adjustments when you don't know what else could be going on. Tomorrow my husband is going up there to cancel my adjustments. I'm calling my doctor tomorrow because he's been on board this whole time with the dysautonomia stuff and am gonna get an appointment so I can get an MRI done. Do you know if I need a neurologist for part of the diagnosis? Or if it comes back as Chiari on the MRI will I just go straight to seeing a neurosurgeon? I went against my better judgement by getting adjustments before an MRI. I really should have with all of the nervous system involvement going on, just to make sure it was safe.

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I guess you don't necessarily have to go to a neurologist, but the brain is their specialty. :)

My MRI report did not specifically say "no chiari", but when my neuro reviewed it in his office (when I was there), he said "no chiari" out loud to me.

I guess it depends on the radiologist that looks at the MRI. If you specifically say they are looking for chiari (or get your doctor to write it on the order), then maybe they will make mention in the report.

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The doc the issues the order will have to specify that it needs to be an upright mri of the brain and cervical spine. They will also have to specify that the c spine images should include images in flexion and extension. They will have to specify why they are doing the test which is when they should specify that they are looking for chiari or c spine instability. Using these dx codes should alert the radiologist reading/interpreting the images to look for chiari. But remember chiari is a subspeciality amongst neurosurgeons just like pots is a subspeciality amongst neuros and cardios, so getting an accurate assessment of your images and situation will be as good as the doctor doing it. I know the neurosurgeon I'm supposed to see next week (who's supposed to be "the guy" to see for this stuff), won't take any radiologist's word for it and reviews all the images himself during your first appt.

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I have it and it was diagnosed with a regular MRI and a cine MRI. I have never had an upright. I definitely feel that there is a connection, however, my mm drop is so slight that the Mayfield clinic told me to take a "wait and see" approach. There is kinking in my spine and reduced space for the CSF flow, but there IS flow so right now not worth the risk of surgery.

I had to request my MRI's from my neuro, as it was found on a regular MRI and I was told it's no big deal. After reading about it I realized I should have the flow study done, but again, I had to push for that. I was advised to see a Neurosurgeon as opposed to a neurologist while hanging out on the Ben's Friend's Chiari support page, and through discussions there realized that what I was dealing with symptom-wise was very likely POTS so they sent me on over here. Sure enough, that was the case.

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Thanks guys for all of the specifications. If it is Chiari I don't want the MRI to miss it. I will keep all this in mind when I'm asking my doctor for an MRI. I'm lucky that my doctor never treats me like a hypochondriac, but instead always says "it could be" and let's me get tests for things. It's a breath of fresh air to have a doctor that believes you. With the exception of an x-ray I haven't asked for tests for anything else though lol.

I really feel like this is it. It explains everything. I've been complaining of a painful pressure (where the worst the pressure is the worst my neurological symptoms are) since the dysautonomia started. At first I thought this was for all of the reasons the chiropractor said. Now I think it has to do with this. At first the chiropractor gave me some relief, but all of the things that gave me relief are coming back and now I'm getting worse again for no reason :'( So my husband is calling today and stopping the adjustments and trying to get them to stop charging us. Whenever I do any of the things frequently mentioned it puts more pressure on it. For some reason when I cry it hurts a lot more. I looked that up because I found that weird and haven't heard anyone mention that but apparently that is common.

What causes this? My mom was in labor with me for 42 hours and I was sunnyside up (that's what she says), and part of the way through the birth canal but than they had to do a c section. I had a bad cone head for months because of this (it eventually went away.) Could this be related? I'm really confused as to what causes it. I wonder what sets off the symptoms. I cracked my head open about 7 months before I started getting dysautonomia symptoms but I don't know if there's a relation. I had the neverending, everyday horrible headaches all throughout highschool but the other dysautonomia bs didn't start til about a year ago.

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My son was born with chiari 1 malformation and had brain surgery when he was 4 he was diagnosed from a brain/spinal cord MRI it was a special one that can tell you if there is a blockage in the flow of cerebral spinal fluid (many people with chiari have this problem) the MRI was not upright but I am sure an upright one would probably be even better. Definitely make an appt with a neurologist and maybe hold off on the chiropractor till you get this figured out. Do you have trouble swallowing food and do you snore? Many chiari patients do. My son had a swallow test done as well. Best wishes :)

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So I had 2 seizures Monday night and went to the ER and they admitted me [i'm still here :(] and they ran a CAT scan and a regular MRI on just my brain. They said they didn't see any Chiari and that if there was any the tests would have shown it? Is this correct? I don't know what to do anymore. I'm getting worse and apparently now I'm having seizures too and I feel like we're never going to figure out what my primary cause is.

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Among docs highly specialized in chiari, a regular mri or cat scan is not a definitive test for diagnosing chiari. I don't mean this to sound derogatory toward the general practitioners but many of my "regular" docs didn't even know that upright mri is available until I told them. It was my geneticist who sent me. She is more familiar than most because a decent number of EDS patients have chiari or cervical spine instability issues. She works closely with a neurosurgeon who specializes in these issues. Some peolle with a severe chiari may get lucky and it shows up on a regular mri but a regular mri does not rule it out. I know it feels like docs should all know this because we on these forums (pots/eds) talk about it quite a bit. But we are really a very small percentage of the population and within our communities an even samller percentage may have chiari. It's very rare so docs just aren't that knowledgeable.

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Yeah the doctor who did it said he diagnosed several chiari's based off of catscans with people who didn't even have symptoms but it showed up. He said with my symptoms it would show up. I'm not going to rule it out, but I feel a little better about it now. At least it's not so bad that it's really obvious if it is there. I'm getting referred to the Vanderbilt Autonomic Center to sort all of this out. Now that I've developed seizures too my dysautonomia is obviously getting worse and we really have to sort out what's causing it. Everyone was right about the chiropractor. They are crooks. They are trying to screw us financially for stopping and even though we said the doctors ordered me to stop going they kept going on and on about how necessary it is and saying the reason I had a seizure was because I still need to go. Total **. The fact they told me to not listen to my doctors is horrible. My husband told them I've been in the hospital for three days because I had 2 seizures while going there and they were still trying to tell me I need to go back and that I need to do some sort of cleanse. I'm all for eating healthy, exercising, alternative medicine and stuff but I hate it when people act like it's the cure all. There's obviously something serious going on and they are telling me to ignore my doctor, not take the meds they want to give me, and keep going there. They kept saying how the x-rays were getting better and that means I'm getting better and my husband told them that I wasn't getting better though, I was getting worse so that's obviously not the cause. Apparently the doctors here told me that your spine can't even press against your brainstem and now I feel like a huge idiot for trusting them and spending a few grand on those idiots.

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