cerebellar tonsiller ectopia

As I am reading the posts on here, I notice most have the size of the tonsillar. On my MRI, it just says mild cerebellar tonsillar ectopia, and foraminal narrowing at C5-6 and C6-7, there is no measurement. Is this unusual? On a earlier MRI, they found a thoracic syrinx, 5.7 cm. All I have been told by my NS is it is not a tumor, most likely trauma related. What puzzles me is he never called it Syringomyelia, even though on line, every time I look up sprinx, it takes me to syringomyelia. Just wondering why NS didn't call it that?

[thieb9]

Hi there. Syringomyelia is basically having a syrinx, and since you have chiari it is very possible that it has caused the syrinx. The size of your herniation isnt what matters. What they need to look for is over-crowding, a blockage of csf fluid ( which is possible with having the syrinx) and things like that. A syrinx in a cyst filled with your spinal fluid because it is blocked somewhere (in most cases) but they can also be cause by trauma. I would say maybe look for a second opinion if you are not comfortable with what yur NS had to say..Are you symtptomatic? I just had decompression surgery 2 1/2 weeks ago because I had a small cervical syrinx (but it was growing fast) And I also had a csf blockage and overcrowding, so I had a lot of symptoms

[bosmama401]

Thanks for the info. How do you know I have Chiari? Is that what the foraminal narrowing at C5-6 and C6-7 means in english? Do u have any idea where those two C's are located in the back area? I have a painful  tenderness to the touch at a spot in the middle of my back, almost even with the bottom of my shoulder blades. My thoracic syrinx is located at T6-through T8, it is 5.7 cm. long, and mild thoracic kyphosis. My symptoms are pain in my neck( sometimes almost unbearable) in shoulders and across top of my back. Last night, i was awakened with severe pain in what felt like every knuckle in both my hands. And sometimes my feet are tingly, and ache, and feel like elephant feet. Does any of that make sense? I feel like my body has done a complete 360 in the past year. Thanx for reading all this, and any help is greatly appreciated.

[niki3350]

Oh dear honey you sound like you are being given the chiari runaround, like you mine is described as a mild cerbral ectopia, and until 3 weeks ago I had no measurement, as my NS said thy dont measure???  but he di it to the best of his ability and says around 3mm.  He is not a chiari specialist!!!!

I have been given the runaround now for three years was diagnosed chiari to then have diagnosis taken away, last monday, they now say M,E and fibro as they dont think my small herniation is big enough to be causing my severe leg,back, shoulder blade pain that you describe, numnbess,tingling,mild incontinence, heqadaches that last 4 weeks,severe eye pain, total loss of balance, visual disturbance, inability to function cognitivly at times,collapses, fatigue....  The list goes on and on and on......

I am now being refered through my GP to a chiari specialist, so pray that I get answers here, I have no csf blockage and dont no about syrinx as my reults from full spinal mri are not back yet.

Dont give up this is your life and you no your body, I pray that you find a NS that understands and listens to you.

GOOD LUCK WITH YOUR SEARCH.

keep us posted honey.

Niki x x x

[Givenstrength]

What I've learned... Your C5-7 disk are the bottom disk of ur neck! I have problems with those disk to which leads to HORRIBLE neck pain!

And from MRI report... To me... The wording Cerebellar Tonsillar Ectopia is what's saying you have chiari.

Hope you find all the answers you are looking for! Try to find u a chiari specialist!

[rod44]

Cerebellar ectopia is a term used by radiologists to describe cerebellar tonsils that are "low lying" but that do not meet the radiographic criteria for definition as a Chiari malformation.
Some NS call this Chiari 0. This is part of the confusion around CM. Some dont recognize or accept the Chiari 0 theory that tonsil decent of less than 5mm can be problematic.


Ray

[selmaS]

Hi...the old way to determine chiari is by the size of the tonsil herniation, 5 mm was the criteria, and many drs will accept ne herniation...even a 0 herniation...

Chiari is, the malformation of the skull which leads to the cerebellum part of the brain to be forced down onto the brain stem which can cause compression of the brain stem and spinal cord as well as a CSF blockage...this constitutes chiari....

Low lying tonsils r an effect of chiari...but t not them self chiari...but, many with this do have it.....and will have many of the symptoms,so further testing is needed to determine.

PTC pesudotumor cerebri or intra-cranial hypertension can cause the tonsils to be low lying as well....and all the same symptoms of chiari...but the skull has plenty of room....

U want to make sure u do not have a syrinx....this is a result of a CSF blockage and can lead to further problems.

There r many diff ways drs and radiologists look at chiari...but, remember it is the malformation of the skull which leads to the brain to herniate...and the size of the herniation does not matter...in fact the shape and width of the tonsil is more important and that is never mentioned.

What u need to know is do ur low lying tonsils create an obstruction to CSF flow...and do u have a syrinx....do u have over crowding....then go from there....JMHO.

"selma"

[sleepypea]

My first MRI states I have Cerebellar Tonsillar Ectopia 5.5 mm. The other MRI with CINE states I have low lying tonsils that do not meet the criteria for Chiari, However when I went to my NS he did dx it as a Chiari 1 Malformation. So you probably do have Chiari. A lot of people with a CM1 also seem to have disk problems such as buldging. I had a spinal fusion at C6-7 in 2006 long before I had a dx of the Chiari :)
I recently found out I also have mild thoracic scoliosis which is also sometimes present with Chiari.
You should make an appt. with a true Chiari specialist and they will help you to know for sure. There are a lot more test that should be done to accompany the DX and best plan for treatment....Good Luck in your quest for answers :)

[jesswabbit26]

Do you know the effects alcohol has on cerebellar tonsillar ectopia, should it be avoided altogether?

[selmaS]

Hi...I would avoid over indulging if u r having odd or ill effects...and many times it is hard to know what the symptoms r or is an affect of the alcohol.

Plus, ur issues could be a result of related conditions...so, alcohol is not something we need...so, y risk it...we r all off balance already...we do not need to fall...

This is all JMHO....

"selma"

[harley39]

I have low lying tonsils also MRI says I have a 5.5 mm flow void and a tortuosity of the carotid artery I have head aches my balance off stiff neck shoulder pain into arms numbness in legs my ears hurt and throat can't seem to get help dr pushing it off to neurologist and can't see him til October over a month away my my job let me go because of health issues

[rochelle_60]

I had a MRI and it came back Cerebellar Tonsillar Ectopia, I have had some numbness in the tongue, and lip, neck pain, and ringing in the ear, I have had back surgery a few years back on the L-5 disk, they don't think my symptoms are for the Cerebella tonsillar Ectopia, any ideas?

[selmaS]

  Hi and welcome to the Chiari forum.

Get copies of ur MRI and the report, and get another opinion...have more testing to see what is causing the issue...not all with herniated tonsils have issues as a result of it, but since u had surgery on ur back, u may have scar tissue or some related issue to chiari that with out during further tests u will not know.

U want to know if ur herniation is causing an obstruction of CSF and if there is overcrowding.

Also ask if the herniation is a congenital Chiari or an acquired one.