I got a call from Kim at Dr. Oro's office today and they are saying that I don't have a true Chiari but I have a boarderline Tonsil Ectopia. she asked me if I wanted to get my tests done here (Cervical MRI and CINE MRI) or if I wanted to go to Dr. Oros to have it done.
So I have a few questions:
What is the difference between Chiari and Tonsil Ectopia.
Can Dr. Oro even help me? What would you do? I just don't want to waist his time or mine. I just want to feel better since he is a Chiari Specialist and they are saying I don't have true chiari just tonsil Ectopia. Thanks in advance.
" 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. The currently accepted radiographic definition for a Chiari malformation is that cerebellar tonsils lie at least 5mm below the level of the foramen magnum"
I dont think it would be a waste of time to have the tests done. I was told I had "bordline" Chiari because my MRI showed a herniation of just under 5mm however MRIs cannot show the true length as they are an image. Mine was just over 12 mm and is still 8mm after surgery. It is probably best to have the tests done if you are experiencing symptoms. A CINE MRI is important if Chiari is suspected. It shows the flow of CSF and if there are any concerns with the spine itself.
Thank you for the explanation. MY PCP had no idea what a CINE MRI was and he sent the report over to the radiology department and they too had not heard of a CINE MRI so they are looking into it and I have the MRI schedualed for 9am on Tuesday. Can you do the CINE MRI on a regular MRI machine or does it need to be a special machine? Thats good old middle of no where Wyoming.
I would have Dr. Oro do the CineMRI because they are worthless in the wrong hands. Also, length of herniation does not matter. There are so many variables that specialists take into account when determining what treatment is best for you. By the way, Ectopia is just another word for displaced. All CM's are different, meaning that everyone's tonsils end up in different positions in your head given your unique anatomy. We all have different sized foramen magnums too so that's another factor. This all boils down to the fact that if your doctor thinks you have a CM issue, it has to do with your skull and spine and their development from birth to now (and other possible health conditions that affect this junction). wow i think i went off topic...
Okay so here's something helpful, an answer to your question...
Tonsillar Ectopia means displaced cerebellar tonsils, which means they aren't where they should be. Chiari Malformation is when the tonsils have been displaced to the point where they are coming out of the skull and into the spinal canal. Trust in Dr. Oro, I've heard good things about him<3 good luck :)
Well, I prayed long and hard last night and after talking with my husband... I think we have decided to go with Dr. Oro. I will be calling Kim back today and schedualing an apointment with him. I figure if he is willing to see me he must feel he can help me. Thanks for the advice.
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