I’ve been diagnosed with a mild Chiari. Dr. Heffez at the Wisconsin Center said that only one of my tonsils goes into my foramen magnum by 1mm. He also said that I have some bulging discs in my neck. After listening to my symptoms and doing a thorough physical exam he recommended surgery on my neck for the bulging discs and that surgery was a necessity. He said that my symptoms “may” be from the discs in my neck but that the Chiari was “something”.
Dr. Heffez showed me my MRI and the opening of the foramen magnum. He explained that half of it was not suppose to be there. It looked like a half full circle. I agree that some of my symptoms could be from the discs in my neck, but wonder if the Chiari is causing my mental symptoms. I’ve read that the size doesn’t matter and went to the Mayfield Clinic in Cincinnati on Thursday for a 2nd opinion…which was a waste of time and money. The doctor asked me if I had my B12 checked. Really? Ugh, yes my B12 is fine and I’ve been to every type of doctor over the past six years. To humor me he ordered a CINE MRI. He didn’t think my mental symptoms were related to the Chiari and asked if I had been worked up for seizures. Seizures don’t last for 3 to 30 days. My worst and scariest symptom is the confusion. I get to the point where I can’t walk and feel like I’m going to become catatonic. I can’t express enough how scary and severe the mental stupor is. When I experience it I feel like I’m slipping away. It last anywhere from three to thirty days…and I can’t do anything in this state.
So my questions are: Which neurosurgeons take a mild Chiari seriously? Is surgery an option for a mild Chiari? Is there anyone else who has issues with such a mild Chiari? How do you read a CINE MRI? What does a blockage/reduced flow look like on the CINE?
Visual snow – 1st symptom noticed, more often
Blurred vision - often
Sharp eye pain – less often and just this year
Move eyes to side feel jerking sensation like falling
and hear whooshing water sound – less often, after vertigo
Florescent light causes brain fog – very often
Floor moving up and down – less often
Unable to read - often
Stationary objects appear to move in towards me – less often
One pupil larger than other
Feeling flu-ish – more often
Pressure on chest, feels like weight on chest – more often
Tunnel vision leading to blacking out – less often
Muscle twitches – less often
Burning ears – more often
Body buzzing – more often
Tingling ears – often
Tingling on back – more often
Tingling on back of head – more often
Feeling cold – more often
Numb left side, face, lips – less often and during last flare
Burning arms and shoulders – less often and during last flare
Cold chills on small area – more often and just this year
Severe overall weakness – less often but with each flare
Feeling euphoric – less often
Vertigo – with first flare
Dizziness – often
Balance off – often
Sharp pain back of thigh (like bad sunburn) – more often
Ears ringing – all the time
Arms/legs/ankles feel tight almost like Indian burn – less often and just this year
Smelling things not there – only two times
Hearing things not there – only once during first flare
Unable to understand people talking, like they are speaking another language - often
Extreme fatigue – often
Memory loss – more often
Severe confusion – less often but with every flare, very scary
Slowed thinking/hazy thinking/ out of it – very often
Migraines – only a few throughout lifetime
Headaches – less often
Can’t find words – often
Words mixed up - often
Light headed – more often
Joints and Motor
Palms hurt and ache – often
Knees hurt –less often
Feet and ankles hurt – less often
Neck pain – often
Bumping into things – less often with last flare
Dropping objects – less often with last flare
Trouble stepping over objects – less often with last flare
Joints popping – very often
Hyper knee reflexes
Positive Hoffman reflexes
Not all Chiari specialists treat Chiari0, a herniation less, then 5 mm but it is not the herniation but the obstruction of CSF flow that is of concern as well as over crowding....
With some of ur symptoms the joints popping u should be sure to be tested for ehlers-danlos, those with EDS can have cervio cranial instability and this in itself can cause many of the symptoms u mention.
Without a CSF obstruction and a Dr that looks for EDS and how it may be affecting u may not have the right Drs yet....do look at a few others, I know it seems like u have been to a few already but getting the right Drs is key!!
Scroll to the bottom of this screen and click on the Health pages hyperlink for a list of Drs...and tips.
Thanks Selma I'll definitely look into it. I've had doctors ask me if I'm double jointed but that was about it in regards to EDS. I'm not double jointed and don't have elastic skin but do have fatigue, issues with gums, thin skin, bruise easily, popping joints and veins that are easily seen. My most recent weird symptom is chills in a small area. My shoulder will get chills then my forearm on the opposite side of my body and so on. There doesn't seem to be a pattern or reason for the chills. Weird.
Well that is not the way for them to dx this, just asking bcuz I would have said I was not double jointed or flexible....but, when I had PT, they said my ROM was far past what it should have been for the surgery I had on my knee....now I know y, with help I can easily move my joints and limbs in ways I can not do alone....had I worked at it, eh mayb then....
Find a rheumatoid Dr that knows how to dx EDS and get this done, and see if this could be part of ur issue, with what u said so far it seems u could be.
Did he say mild chiari or did he say chiari zero? I had no herniation, but I had at least 18 symptoms (not even that much!), and have had improvement just since last week. So to me, it's either symptoms or no symptoms.
You really want to be sure that there are no other issues going on, like selma says, nor compression elsewhere. If it can be taken care of in 1 surgery, I'm sure that's what you'd prefer.
I had a laminectomy 12 yr ago, and the specialists are finding that if there is compression in the neck then there is compression in the head, and vice versa, about 50% of the time.
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