Hi, I'm new to the forum but not new to Arnold Chiari. My daughter Kim has Arnold Chiari I, but has no symptoms. My niece had Arnold Chiari 1/ spinal cord teethering at age 25 and had the surgery and is doing great.
My question is this, my daughter Samantha age 20 started having trouble with her eyes, she was seeing bright spots and black dots, it was followed by black cloudiness and pressure behind her eyes and then she feels numbness on her ears and down to the jaw and then it fads away lasting maybe seconds to a minute. this has been going on for months. We went to a neurologist and they said her eyes were dialated and barely restricting with light, we got a slew of tests one of them an MRI w/o contrast. In the meantime we went to an eye doc to make sure she didn't have a retinal tear which she didn't, and he said that her eyes weren't that dialated and were restristing to light. we went back saw the neurologist and all tests were normal except found on the MRI she had a 1cm white spot on the "lateral and posterior aspect of the right lateral ventrical" the doctor said he didn't think it was causing her symptoms and it wasn't a tumor, they are testing for MS and just did another MRI w/contrast which we will get results on Tuesday. She also has Arnold Chiari I or an incidental tonsillar ectopia. We were told to make an appt with the Nuerosurgeon on the 27th for further consult. Also Sam had an MRI in 2007 and none of this was there it was normal.
My question is, can these visual symptoms be Chiari? She has only had 2 migranes (migraines) her whole life one was recent after she had her eye exam. but nothing else. Oh and she has some vertigo.Sam's twin sister is having issues with fainting and low blood pressure, we are investigating her for POTS but now I'm wondering if it's Arnold Chiari! I don't know what to think, just wondering if anyone else has had eye symptoms like this,thanks for your help! :)
It is very possible as many with Chiari have visual disturbances similar to this....
The issue could be the Drs she is seeing, most familiar with Chiari do not refer to it as Arnold Chiari unless it is type II.....and would be aware this is a symptom of Chiari and suggest more testing.
As for ur DD not having symptoms, she may have more then u both realize as many times we have it so long we consider how we feel to be "normal" until the issues/symptoms get worse, then when we learn what is normal and not, we realize just how many symptoms we have had all along.
Next, for her MRI to have been clear and now it shows incidental tonsillar ectopia ...I would venture to guess it was there, but considered incidental so it may not have been mentioned or u were told it was a clear MRI....this gets overlooked quite a bit.
Drs look at the length of the herniation to classify if it is Chiari, but Chiari is the malformation of the skull which forces the tonsils to herniate...and it does not matter if they r 13mm or 3mm what matters is it causing an obstruction to CSF....and what other conditions that are related do u have and how it is affecting ur overall health??? This is what should be looked at....
Has ur DD had a MRI of the cervical, thoracic and lumbar spine? A CINE MRI?
Thanks for answering, my daughters MRI in 2007 says nothing of the
tonsilliar ectopia. This recent MRI says her tonsils are 4-5 mm, but with no neural crowding, possibly a mild chiari 1 or incidental tonsillar ectopia.
My other daughter Kim that has chiari 1 diagnosed over 10 years ago did have a lot of symptoms that could of been chiari but the diagnosed her with a rare metabolic disorder. We had 2 docs telling us she should get the surgery and 2 telling us no, we went with no, but I wonder now if that was the best decision. We thought she has spinal cord tethering and chiari. Her symptoms were chronic cyclical vomiting, low muscle tone, speech issues, high gag reflex and a wide gait, most of that was said to be developmental...she has not gotten worse and does not have the cyclical vomiting anymore.
When we see the neuro I know he will order the cervical and spine MRI and a flow study on Samantha. Funny about what you said about learning what is normal and what's not. Sam said her ears having ringing all the time at least three, four times a months or more, when I told her I got that maybe 1 time a year if that much she was shocked because she thought getting it as often as she did was normal. I'm hoping that there's not any blockage of the CSF and alls ok but I guess we have to just wait and see.
Thanks for all your help:)
I have experienced many visual symptoms with Chiari. I had my eyes checked and they are perfect with the exception of anasocoria (one pupil is bigger then the other).. My neurologist seems to think the visual symptoms are due to the Chiari. My eyes do not follow light well or the Dr's fingers either, which again the neuro said was normal for Chiari. Ahh well I am waiting on the Chiari Institute which should be calling me tomorrow to get some real professional answers!
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