Hello chiari family, haven't been on in a while. Got my CINE MRI though! :-)‏

[alimcat]

Hello to all! Have not been on in a while, I never get noticifations that continuously bug me like FB does so I haven't stayed on top of it... I hope everyone is doing okay if not great! And any surgeries have come out successful and with fast recoveries. I had a Supine CINE MRI, they stated there was mild right sided cerebral tonsilar eptopica with no evidence of chiari and no blockage. So that's good. Except now no one has gone back to acknowledge the 3mm wide about 2 give or take vertebrae long prominent central canal in my thoracic spine along with curvature of the spine with convexity to the right.... Has anyone heard of cerebral tonsilar eptopica, every time I search it it comes back with chiari, so I am a little confused. They also said the prominent central canal of my spinal cord was normal in the absence of myopathy, is the eptopica myopathy? I found a rather kind and seems to be caring pcp though so that's exciting. Also I was recomended a chiari expert in LA and emailed him. He emailed me back saying he would be happy to look at my images, so I ups'd them to him Friday. Hoping I can get some educated answers. The neurosurgeon I saw here in sac, well I think they are more familiar with chiari not chiari specialist with the lingo used to talk about the MRI findings. Anyways any thoughts or feedback as usual is always appreciated! I wish I could set this thing up like my FB one. Does anyone know how to do that. This is my favorite group and I want to get back to being more active in it!!! Take care everyone, today is a glorious day, lets make the best of it.

[selmaS]

  Hi..cerebral tonsillar ectopia does not mean chiari...it just means u have a herniation....Chiari is the malformation of the skull, and the result of the skull being too small  is the herniation....too many think the herniation is chiari...both will have the same symptoms.

Low lying tonsils or ectopic tonsils can be considered acquired and not congenital....they can be the result of an MVA, a fall, or ICP.....
Some ICP can be congenital which makes this so very confusing.

Have u been to a Chiari specialist? I had the same problem, one Dr said I had it, one said I did not...this is y knowing u r dealing with a Dr that is well experienced with this is helpful.

The conditions and symptoms r all interrelated.

[alimcat]

Hey Selma! =) Hope you are having a pleasant day!!! Responding to your last post...I am at this time not a surgical candidate. I don't have any stenosis either. Just 5 discs with problems of degeneration/bulging, 4 of those are broad based bulges in my neck, a little faucet neuropathy in lumbar plus the degenerative disc. What is inflammation of the spinal cord? Thanks for your continued support. I keep getting doctors saying it is chiari then others saying its not chiari, I am so damn confused. And is Cerebral tonsillar ectopia chiari or is it not chiari? All I see is chiari when I look it up... Damn this is such an annoying process, then I get that it is a syrinx but then originally it was not... I am like who do I believe? I mean I think it would be very coincidental if all of this was just normal?

[selmaS]

  No worries, well that is a inflammation of the spinal cord, and can be with pinching, many have spinal stenosis....(I do ) and this can cause some pain and symptoms, but not all the ones u have , other wise my surgery would not have helped all the symptoms it did, as I had one Dr that told me it was the stenosis that was my issue....

  Yes, they do all go hand in hand, make sure they check u for Ehlers-Danlos....and tethered cord....with scoliosis and the stenosis, both of these can also be playing a part.
  
U can do MH thru ur phone as well, u do not see the same full page as u would on a computer, but u can access and post.....

I am glad I was able to help u and I do hope u keep in touch, let us know if u r a surgical candidate, and just how u r doing : )

[alimcat]

Okay I spelt that wrong Selma I meant myelopathy. Hahhaha!!! Sorry hard to keep track!!

Actually he says it is not chiari, but when I look up the term about the eptopica, chiari is all that pops up??? Soooo does this guys probably just not know enough? I'm confused. I sent my images to a chiari expert in SoCal though so I'm lM looking forward to what he has to say. I have the eptopica, dilation in spinal cord and scoliosis and I read these all go hand in hand, or is it just one huge coinsadance.

Yeah I turned off the email noti's because I was getting loaded with emails! Which I too dot need. Hahaha!!! I am going to check out how to do the fb though because that's right on my phone and super easy access. Good to hear from you Selma! I always talk about how you helped me discover this!! You little angel!!! ;-)

[selmaS]

  Hi and welcome back.

U can go to ur profile page and reset the settings so u get notices if u want them....I have mine turned off as I do not need all that mail.

In medicine, a myopathy is a muscular disease in which the muscle fibers do not function for any one of many reasons, resulting in muscular weakness.

Cerebral ectopia  is a herniation but many times it can be the result of acquired chiari and is not chiari in that it does not have the malformation of the skull. It can also be, that was just the term used by the radiologist...sometimes they cross the terms...so, it is best to speak with a chiari specialist to know for sure.

I am sure u can save MedHelp on a tab, I do and then as I said go in to settings to change ur notifications....U can also post a link for MedHelp in ur FB profile and just click on that to come over here : )