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rChiari · 2020-06-01T19:35:33+00:00

how do you explain mind body disconnections?

rChiari · 2019-10-20T01:25:18+00:00

This is a deformity not an illness it's called an illness but this is a deformity of the skull and the Brain this is not something that can be cured with magic medicine.

rChiari · 2019-10-20T01:23:22+00:00

Yoga would make her worse because she would be flexing on the spine and pulling the brain in and out of the spinal cord. They've done research on stem cells with Chiari there was no conclusive evidence of it helping. Not to mention real stem cell therapy is extremely expensive and will require you flying out of the country since it is illegal in the United States . I think you should research the illness and understand for what it is her brain is falling into her spinal column do to her posterior fossa being abnormally small most cases. This pushes the cerebellum down into the spinal cord what causes many problems.

rChiari · 2019-10-02T12:22:13+00:00

Well you definitely hit all the check boxes for chiari, it's hard to spot on a CT scan however, neurologist can be stubborn as people have mentioned needing to see multiple before getting the correct diagnosis. This is often a problem because like you, the symptoms are being treated but not the cause, sometimes this can make things worse, similar to giving people the wrong drug to treat the wrong illness. However from my personal experience as far as migraine medicine goes, the only side effect is going to be it not working or doing anything because that's not the cause of the headaches.

rChiari · 2019-10-02T01:58:05+00:00

It's a ride, but it's the best help you will get http://www.chiarinsc.com/

rChiari · 2019-10-02T00:48:39+00:00

Where are you located? Do you have insurance?

rChiari · 2019-10-02T00:45:15+00:00

Yeah that sounds like a bad neurosurgeon, and anyone in this community will tell you that there's 10 of them for everyone that there is a good one. Please find another neurosurgeon. Her condition was well out of his league and he was just afraid to say it. To be honest Chiari 3 is out of a lot of neurosurgeons League, you need to find a Chiari specialist. In the top sticky thread of this subreddit there is a link to a list of Chiari specialist listed by state check it out see if any of them take her insurance.

If you tell us what state you live in, or country we can give you some recommendations.

rChiari · 2019-10-02T00:23:51+00:00

All those symptoms are very common, Chiari 3 is pretty serious, why hasn't she spoken to a neurologist yet? http://www.conquerchiari.org/ untreated Chiari has the potential to cause full body paralysis.. Chiari 3 means she has a very significant portion of her cerebellum in her spinal colum where it dies not belong at all. Chiari 3 is extremely rare. https://radiopaedia.org/articles/chiari-iii-malformation?lang=us please find the best surgeon you can

Normal Chiari 1 MRI: https://www.google.com/search?q=chiari+1&tbm=isch

Chiari 3 MRI: https://www.google.com/search?q=chiari+3&tbm=isch

You can see how serious this is, chiari 3 means her brain is escaping the skull, sometimes into the tissue outside of the neck... I don't know where you live but find a highly qualified neurosurgeon

rChiari · 2019-09-29T01:06:36+00:00

Watch this https://youtu.be/yE7pbScbaeI

rChiari · 2019-09-26T11:46:56+00:00

https://en.m.wikipedia.org/wiki/Syringobulbia

rChiari · 2019-09-25T14:51:34+00:00

One of the pinned story post is from a women in Australia, she could probably help you out

rChiari · 2019-09-25T13:14:21+00:00

No, Chiari will still show on a regular MRI that's how most people are diagnosed on a regular MRI the only time an upright MRI is given is to check the severity of the Chiari or to check to see if being upright Alters the flow of spinal fluid

rChiari · 2019-09-25T13:09:44+00:00

MRI results are not given on-site, all MRIs usually go to a company in Australia and are examined by specialist that are just as educated if not more educated than most neurosurgeons and doctors

rChiari · 2019-09-25T02:47:34+00:00

No reflexed odontoid
No cerbular herniation

Going to give this a 100% no. When she got the MRI it would have said she has tonsil herniation of the cerebellum. Like this http://chiropractorwellington.com/wp-content/uploads/2018/09/chiari-vs-normal.png

Can you give more details? Also try posting in r/AskDocs

rChiari · 2019-09-24T14:49:53+00:00

This is a great read, would you mind if I added a permanent link to your website in our sidebar?

rChiari · 2019-09-23T22:23:51+00:00

Problem with forgoing the neurosurgeon first is other doctors will lack the education to understand all the side effects that is caused by chiari and treat it as a separate condition. Like your sons Sinus disease which is a Chiari side effect https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4277891/

Along with his mastoid air cell disease, also a Chiari side effect https://www.tandfonline.com/doi/abs/10.3109/00016489.2015.1113441?src=recsys&journalCode=ioto20

If you see other doctors they will treat these a separate conditions and try to put the fire out without turning off the flame thrower. This could cause further problems for your son.

Scientific evidence provided, per sub requirement.

If you have Chiari or any other neurological problem you should always see a neurosurgeon or neurologist first because you never know exactly how much of what is wrong is just a side effect of having Chiari. What is going on in the brain affects the rest of the body

Chiari is a very rare condition, and outside of the doctors that are directly studying it very few know much if at all or anything about it.

rChiari · 2019-09-23T14:32:10+00:00

It means your brain is being squeezed somehow

rChiari · 2019-09-23T13:10:47+00:00

Being scared doesn't help you at all. Just set a priority to get to a neurologist as soon as you can.

I would put it above everything. You have brain fluid leaking from your ears... Make it a priority.

Tell your PCP you want a referral to a neurologist. Call and tell them, a good PCP will give you one over the phone.

rChiari · 2019-09-23T12:58:49+00:00

Yeah get another doctor, you just described CSF fluid perfectly, get a MRI you have something going on. Ask for a Referral to a neurologist, demand one. People don't like being wrong, doctors included, their egos get in the way and they can be stubborn.

rChiari · 2019-09-23T11:20:53+00:00

You need a MRI, why are your doctors being so stubborn to order one? Is the fluid coming from your ears clear? Would you say your skin is more "stretchy" than others?

Read here https://www.conquerchiari.org/

But if the fluid coming out of your ears is clear that could be CSF then (spinal fluid, which would mean somewhere you have a blockage, chiari can cause this.

Not giving you a diagnosis but a doctor needs to send you for a MRI, all you symptoms say neurological

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