Chiari Malformation 1 diagnosis with CSF dampening. Is this why I feel so awful?

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Hi everyone,

I was recently diagnosed with chiari I and was hoping to get some encouragement or tips from those of you who have been diagnosed before me. I have a long complicated story but I'll try and keep it brief. Six months ago I had sudden intense dizziness and it felt like I was going to black out. In the weeks following that begin to develop balance problems, shaky vision, intense headaches behind my eyes, heavy head, tinnitus, and many more. I was diagnosed with an inner ear infection and began vestibular rehab. Throughout the weeks and months I was not getting any better and my doctors did not believe me. It was extremely difficult to convince them to do an MRI and a host of other tests as I "looked fine." Everything came back normal thankfully but on my original brain MRI my neurologist noted mild chiari of just 3mm. He said it was probably not a contributing factor but told me to go see a neurosurgeon for another opinion. The neurosurgeon did not think it was significant but wanted to do a CINE study and another MRI. I recently got the results back and they did indicate that now I have chiari of 6 mm and also the cerebral spinal fluid is dampened around that area. I believe that my problem is most likely started with inner ear damage from my infection, but since my cerebellum is already under stress this is why I'm not getting better and why am not compensating for the damage. Or we could be completely wrong and even though mild, the chiari is causing all my symptoms. I have also developed Pots syndrome throughout this nightmare.

I am hoping for a positive encouragement as I don't want anything else that will scare me, but if those of you who have been diagnosed or especially those of you who have had corrective surgery have advice I would really appreciate it. I am wondering if anything triggers symptoms that you have noticed because I do have days that are much worse than others. Also if some of you could talk about some of your symptoms and if it was a difficult journey to get a diagnosis and a doctor that would listen to you. I am only 23 and my life is on complete hold right now. It's been a constant fight with my doctors to believe that I really truly feel terrible and that this is not stress related. I feel like I'm finally getting close to answers and to having a solution to all of this but would appreciate any advice!

Also, was there a triggering event that lead to your symptoms? Thanks in advance smile

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  • Posted

    In my experience, having had Chiari for 57 years, it is the cause of ALL THINGS!!!  I only got diagnosed with it in November 2016. I went to my GP and told them I wanted to have an MRI of my brain. They said why? You think you have a brain tumor? I said- don't know what I have, but something is NOT RIGHT!!  MRI results back and my Doc. called me immediately with the news that I have Chiari. So I've done tons of research, had many many tests and MRI's and seen two neurosurgeons and a neurologist. I had surgery June 2 and am now having symptoms again. Post surgery I did great up until I didn't. So now I've been trying to convince my new NS that SOMETHING IS WRONG!!  The feedback I've been getting on some of the patient forums has said that it is all part of my post-surgery recovery, however, I do not believe that. I was doing GREAT post surgery and there is no logical reason for the symptoms to come back unless there is a problem: allergic reaction to dura patch, CSF Leak, etc. 

    If you look logically at the organs involved in Chiari: 

    The cerebellum coordinates voluntary movements such as posture, balance, coordination, and speech, resulting in smooth and balanced muscular activity.

    It is right next to the brain stem, which regulates cardiac and respiratory function, consciousness, and the sleep cycle.  So if the cerebellum is being squished due to the skull being too small, it is then pressing against the brain stem and pushing the tonsils out of the skull through the foramen magnum.

    When this happens, CSF flow can get blocked. The primary function of CSF is to cushion the brain within the skull and serve as a shock absorber for the central nervous system, CSF also circulates nutrients and chemicals filtered from the blood and removes waste products from the brain.  

    When the CSF flow is blocked, it continues to be thrust through the brain. The more it thrusts, the more tonsil gets thrust through the foramen magnum. So a tonsil may be only extending 3 cm through the FM and then later may be longer due to more thrusting from the CSF. 

    So your symptoms of dizziness, balance, etc. are a direct effect of squished cerebellum, squished brain stem and blocked CSF. DO NOT LET THESE DOCTORS get you down. Most of them are unfamiliar with Chiari. It is a RARE disorder. And if they have no experience with the symptoms, they can only go by what they read in a book. And there isn't much written about Chiari. 

    To determine if you need surgery, you have to look at how debilitating the symptoms are. I found that walking like I was drunk, feeling like my head was constantly spinning and talking like I was drunk, without the benefits of actually inbibing alcohol, were enough of a detriment to my quality of life. So when I got back results from my Cine MRI which indicated CSF flow was totally blocked on the right side, it was a no-brainer to get the surgery. I had Immediate relief from symptoms post surgery. 

    DO NOT LET THESE DOCTORS tell you it is all in your head  or it is stress or something else. If you have an MRI which shows Chiari and you have multiple symptoms, you have a case for getting surgery. Get a second or third opinion.  Too often, they discount symptoms that are "different" than what other people have. There are a ton of symptoms associated with Chiari. My neurologist and first neurosurgeon didn't think my symptoms were that bad or indicative of Chiari until I got the Cine MRI which showed CSF blockage!!

    The surgery itself is fairly simple. You get placed on you stomach with your face in a hole and they cut open your head, pull apart muscles and tissue. When they get to the skull, they cut a small portion out in order to make more room. They may also cut off part of the C1 vertabra (bone). Some doctors will stop there. My doctor actually opened up the dura layer of the brain, cauterized the tonsils so that they would shrink back up into the skull, and then closed it all back up. 

    As I said earlier, all my symptoms went away. I had to deal with nausea from painkillers, work up my energy and build muscles back up, but I was able to go on a plane trip after 3 weeks post surgery.  

    I saw my NS for my post surgery follow up visit August 10 and was doing great. Now, however, I've gotten back some symptoms- dizzy, balance, disoriented, minor headaches. I've researched and haven't found a good explanation for this, other than there is a leak or some other problem- like with the dura patch.  

    I found it best to research everything, get copies of all my reports, tests, MRI's etc. and studied up on everything. It makes it easier to cope with. If you're not up on anatomy or all the medical jargon, just look it up on the internet. 

    Good luck!!

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  • Posted

    Doctors typically go for the diagnosis that they are most familiar with. They have limited experience with Chiari since it is so rare. Chiari is a congenital disorder, therefore you've had it since birth. It isn't the result of the ear infection. 

    For your doctor to say that Chairi is NOT  a contributing factor in terms of your symptoms, is ridiculous!  The Chiari started FIRST> You just hadn't developed symptoms from it yet. Since your tonsil is now 6 cm and CSF flow is being blocked, the next step would be surgery to make more room in the skull for your cerebellum. 

    The only treatment for Chiari is a) decompression surgery or b) management of symptoms with drugs.   My symptoms were balance, dizziness, headaches and visual problems.  As far as I know, there isn't anything that triggers symptoms other than jerking your head around too much. Bending over can cause positional headaches.  Avoid chiropractors, whiplash amusement rides. Some people think weather affects their symptoms.

    Don't let your doctors boss you around or talk down to you. Be insistent and if you don't get what you want, ask to speak to the manager. These docs don't want patients complaining about them. If you are near a university, try to see a doctor within their university neuroscience (I live next to IUPUI- where IU Med Center and all is nearby). I've been told that university doctors are more open to patient issues and more likely to listen. Research everything- the more you know, the better off you are in talking to your doctor.  

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    • Posted

      Thank you so much for your response. 6 months ago I never could have imagined that this is where I'd be right now. I hope I'm finally getting closer to having this fixed!

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