Retroflexed Odontoid

[Guest guest]

Hi everyone-

My name is Kari, I am from Minnesota. I was diagnosed with a retroflexed

odontoid with pannus in 2007 (I was 39 at the time) by Dr. Nazli McDonnell

through her connective tissue study there was also concern of a possible

tethered cord. My concern is that I am having some symptoms that are quite

concerning to me. I am now 43 years old- (My cardiologist has never heard of

retroflexed odontoid, and he has never heard of it causing heart palpitations).

I have been having chest pressure, and very frequent PVC's which seem to be

getting worse. I get very light headed at times. I do not have severe headaches-

although the back of my neck is quite bothersome and I have a tingling sensation

on the left side of my neck that seems to come and go. I am not sure where to

turn, and wondering if anyone else has experienced these symptoms. I am honestly

afraid to bring up these symptoms to my Mayo Clinic Doctors. I have been

diagnosed with Fibromuscular Dysplasia with connective tissue features of EDS, I

also have very small brain aneurysms- Is connective tissue disease related to

Chiari? Any suggestions would be most welcomed. Is there any symptoms that are

should be concerning when someone has chiari or a retroflexed odontoid? Is there

any treatment available besides surgery? Thank you for listening.

[Guest guest]

Hi Kari,

I have a Retroflexed Odontoid (for those of you who

haven't heard of this term, it's when the peg like bone

near the top of your neck, bends backwards at the tip,

towards your brainstem, instead of just pointing

straight up).

For years I experienced arrhythmia's, (some people

call them palpitations but to me these are a

completely different thing). Arrhythmia's are an

irregular heartbeat, where your heart might miss a

beat, or put an extra beat into the rhythm, or alter

from a constant strength to a weak then a strong beat,

I've had them all! Sometimes you feel quite ill with it

and it can make your chest feel tight. Sometimes it

makes you cough, to clear your chest - and the

coughing can 'kick start' the normal rhythm.

Originally I was diagnosed with POTS (Postural

Orthostatic Tachycardia Syndrome) but it wasn't

just standing up that caused these arrhythmia's.

Although knowing what I know now (that I have

Cranio-Cervical Instability) I can understand

why standing up can trigger them. Whenever you

stand up to do something, if it's at counter or work-top

height (i.e. seeing to small children or preparing food)

your head is nearly always looking down (in flexion).

I underwent all kinds of cardiac tests, a stress test

(looking forwards), a stress test (laying down),

echiocardiographs and eventually an angiogram, which

showed no heart defect. My heart was capable of

functioning normally but it just wasn't at certain times.

I eventually persuaded a cardiologist to let me wear a

heart monitor for 7 days and this captured the lot, with

runs of bigeminy and trigeminy arrhythmias.

My understanding is that the unfortunate combination

of low lying cerebellum (or hind brain) and cranio-cervical

instability, dependant upon head position, can cause

the back of the skull opening (the foramen magnum)

and the retroflex odontoid, to carry out a 'pincer' action

on the cerebellum and brainstem, when your head is

in flexion. Your brainstem has an influence over

your heartbeat .

If the action is a gentle or subtle action, then only

Cerebral Spinal fluid (CSF) will be displaced and you

may suffer no consequences. If it's more severe or

prolonged and all the CSF has been displaced,

you will start to suffer the consequences of a

brainstem or cerebellum under the distress of subtle

compression. Unfortunately you don't feel pain when

this is taking place so, without recognising the subtle

signs, you don't know it's happening and therefore

don't take corrective action.

Flexion is what I concluded was one cause of my

arrhythmia's/chest-tightening because, when I

adapted my approach to tasks, to include as little

flexion as possible (i.e. looking at my task from a

sitting position with my head squarely forwards)

my arrhythmia's were less. Furthermore, when I was

fitted with a Philadelphia cervical collar, which held

my head firmly, in a nice neutral position, the

arrhythmia's became even less troublesome.

Incidentally, if I also kept looking to right and left

whilst my head was in flexion, I could feel a strange

tightening in my throat, as if it was swelling inside

and these consequences could last up 30-40 mins.

I avoided this movement and the throat tightenings

ceased.

I hope this information helps.

Regards

Barbara

(UK)

[Guest guest]

Again Barbara, you have saved the day and are a life saver (thank

you)! Once I get off these meds and my head back on my shoulders I

can wrap my brain around some real thoughts, I look forward to

understanding this!

Hopefully we can meet soon!

Bea

Surgery is finally tomorrow! I can't wait for the rest of my life to start!