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9673424 tn?1405208080

Questions/Introduction

Hello there, I found this website upon looking for answers about my Chiari and I was delighted to find that there was a whole support network. I have more knowledge than the average 17 year old on the subject of Neurology but have very many questions when it comes to my own case, as it's abnormal. And I was wondering if someone could point me in the right direction until I can call my Neurologist on Monday. I plan on becoming an active member of this site.
Okay so here are my concerns;
I had an CT Scan a little less than two years ago that indicated that I may have Cerebellar Ectopia. My dad didn't tell me at the time because I was going through some severe anxiety. In the last year or so I have been more stable and started experiencing severe headaches so my dad took me to my neurologist I'd seen a few times before. He was concerned that it might be Chiari, not just a slight Cerebellar Ectopia. He was right, but he said it was not likely to cause me too many symptoms besides maybe some headaches in the next 5 years.

There lies the problem. My headaches have been getting worse and have began radiating from the base working their way up, I've been having trouble swallowing, my balance seems off, my heartbeat does something that resembles orthostatic hypotension, and for a while now I've been extraordinarily nauseous.

Now, as an educated layman, This sounds like a bad case of Chiari, especially with my diagnosis.

Is it possible that a non-severe case of Type I chiari can turn into a full-blown symptomatic case?
2 Responses
9432311 tn?1432825085
Hi. I understand how your knowledge of neurological anatomy can stimulate so many questions for you once you find out that your own brain has some anatomical differences. The reason I am responding is not because I can give you any answers to your questions. I did want you to know that your words are being heard. I hope you find someone more scientifically knowledgeable to put your mind at some level of ease. Just know you are being heard.
620923 tn?1452915648
COMMUNITY LEADER

  Hi and welcome to the Chiari forum.

The biggest problem you may encounter  a NS/NL that is not well informed or experienced with Chiari...just bcuz they can DX it does not mean they should advise on  treating it....

You will want to research Drs to find the right one for you.....

Anything can cause your symptoms to flare and they do cycle so the symptoms can come and go, get worse then go away for a time and for how long can depend on your activities...

Anxiety can also be a result of having Chiari...I also had it and had heart palps...all gone post op....but that does not mean you are a candidate for surgery....there is more testing to be done...a CINE MRI to check CSF flow, and MRI's of the thoracic, and lumbar spine as well as the cervical spine to rule out a syrinx....these can develop any where in the spine and some Drs only look at the cervical spine for them...this is a related condition which can lead to more damaging issues so it is important to rule out as it is important to rule out Ehlers-Danlos as it can affect the recovery process .....so all should be done B4 you consider surgery.

As for you last question...non severe case? Not sure what your Dr meant by that  until or unless more testing was done there is no way to determine  what case of Chiari you have....research Drs and get more testing..

Know you are not alone : )
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