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just diagnosed Chiari malformation


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Old 01-06-2018, 07:58 PM   #1
JC19
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just diagnosed Chiari malformation

Soooo maybe I finally have found the cause to my suffering... I went to the doctor because slowly over the past year both sides of my face have been. Hurting, I originally thought it was tmj but now I'm thinking my chiari could be the cause, to give you an idea as to how bad the pain is.... I punched and broke a window during one of the 'attacks' but it's not like I'm free of pain and get random attacks, it's pretty much 24/7 my cheeks hurt. Like burn and ache...smiling is impossibly painful. This really has ruined my life because I used to be known as this happy 18 year old..I was even known for my smile I also have had a super loud ringing in my left ear, it started when I was 14 and has progressively louder ever so slowly. When I was 15 I started experiencing brain fog...and of course my parents took me to a psychiatrist instead of a doctor and I was berated into believing I aas a hypochondriac ....any way fast forward to now. I have no quality of life. My doctors don't understand the amount of pain I'm in. I have a Neuro appointment in 3 weeks. I'm just wondering if Chiari can cause all these problems? It seems like traditional medicine only recognizes a few symptoms. I also get really bad headaches, the ones that hurt when you cough or move and stuff. My regular doctor that ordered the mri told me that for most people have it all their lives and never know it...she basically implied it couldn't be the cause of my problems. I've been diagnosed with chronic EBV, trigemenial neuralgia, chronic fatigue and depression. At this point I don't even tell the doctors all my symptoms anymore...because every single one I've gone to has made me feel crazy and refused to treat my pain seriously.

My mom has a Vicodin prescription which she administers to me...That's literally the only thing that's ever touched my pain. But of course the doctors think the risk of addiction is more serious! Sorry this was more of a rant than anything. My worst symptom is the facial neuralgia....it has made everyday life unliveable. I had to drop out of college because of it. I can't have friends because I'm embarrassed that I can't smile because of the pain.

Last edited by Administrator; 01-07-2018 at 07:36 AM.

 
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Old 01-07-2018, 06:15 AM   #2
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Re: just diagnosed Chiari malformation

Hi. I am sorry you are in so much pain, but I really dont think Chiari is the cause of your symptoms. Chiari presents much like MS...and many people I know who have MS have turned out NOT to have MS, but to have Chiari malformation. Unfortunately they were given wrong diagnosis until they saw the right specialist.

Your neuro appointment will be revealing. Push for a MRI of not only the brain but of the C spine as well. As a person who lives with MS, I know how hard it can be to get a dx which is accurate...make sure you are seeing a neuro specialist; either a MS specialist or a Neuro who is well rounded...make sure the one you see is not specific to strokes or migranes.

Good luck!
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Old 01-08-2018, 07:15 AM   #3
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Re: just diagnosed Chiari malformation

Welcome to the board. First it would be helpful to have a bit more information. I know the title of your thread is "just diagnosed..." but I am not clear on whether you have known about the Chiari Malformation for a long time or was this just found?

Second, and very important, is the fact that very few doctors know more than the bare minimum about this problem, and most of what they know is incorrect. Well, perhaps incorrect is too strong a word. What they know may be correct, but most doctors, including most spine surgeons, have extremely limited knowledge (and may not even be aware of this!). Again, I don't know your background, but if you have had quite a bit of evaluation, and a CM has been found, I would certainly recommend pursuing this line of inquiry. I don't know if you can do so, but, depending on where you live, you may have to travel to see a Chiari specialist. They aren't that easy to locate.

What I know about Chiari Malformation is that neurosurgeons who study and treat CM now define it as a result of the compression of the brain stem or spinal cord at the base of the skull. This may occur even if the tonsils of the cerebellum protrude through the foramen magnum (the base of the brain protrudes through the opening where the spinal cord and brain connect) by as little as one millimeter. The important factor is whether there is a blockage that keeps the cerebrospinal fluid (CSF) from flowing freely.

The diagnosis used to be based on the cerebellar tonsils descending more than 3-5mm out of the skull. Researchers now realize that someone can have severe symptoms with a minimal measurement. Patients may have a variety of symptoms. The fascial pain you describe is not a "common" symptom, but that does not mean that the CM is not responsible for your issues. That's an awkward way of saying everything you are experiencing could be generated by the Chiari Malformation.

There are often related cervical spine issues so you should have a cervical spine MRI in addition to whatever else they need. You will probably need to see a neurosurgeon for an accurate diagnosis. And, again, it may be difficult to find one who is experienced and knowledgeable in Chiari!

Good luck to you. Let me just remind you that finding an accurate diagnosis can be very frustrating and time-consuming. Do what you can to educate yourself and learn to be patient, but persevering. Do not give up. There is hope. It is a matter of finding the right doctor that can help you.

Last edited by teteri66; 01-08-2018 at 07:16 AM.

 
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