Help!!

teteri66

Have you consulted with a neurosurgeon? Another name for Tonsillar Ectopia is a Chiari Malformation. I am not saying that is what you have...just that it is a possibility, and as such, you will need to find a highly specialized neurosurgeon. This is a very complicated problem as it involves tissue that is located in or near the brain stem in the lower skull. If surgery is required, it is a very technical surgery that most spine surgeons are not trained to perform.

In a Chiari malformation, the cerebral tonsils (located in the lower part of the cerebellum) hang down through the opening at the bottom of the skull. This prevents the cerebral fluid from flowing easily into and out of the spinal canal. It causes symptoms like dizziness, ringing in the ears, loss of balance, headache, choking, limb weakness and neck pain.

Because it is somewhat rare, it is often misdiagnosed. (The only reason I knew about it is because my husband's longtime secretary complained of headaches for years before she was diagnosed.). You may be able to find a neurosurgeon/specialist in the Detroit area or at U of M who can help you. There is a well-known research and treatment center in Milwaukee called the Wisconsin Chiari Center. They have an informative website where you will find info on the various types of Chiari, diagnosis and treatment options.

Obviously I have no way of knowing if you have this condition...but it would be worth looking into it since the diagnosis is missed by so often!!

Good luck and let us know how you are doing.

Bambi13

I have actually been going to U of M and they gave up on em, started going to a neuro at Beaumont and this is who sent me for most recent MRI but I'm having to wait until 25th to see her. I'm in so much pain that I keep wondering if it would even help to go to ER? I have heard of Chairi but it is 5mm and more to be considered Chairi in most cases. I'm scare she will say this is normal at 3mm and nothing to worry about. I'm certainly not in all this pain and other symptoms for nothing ugh. This is year 3 and I'm at my wits end with this...

Thanks so much for your reply

teteri66

I would think the ER would not help...except maybe you could get a MRI faster! Many neurologists don't know how to diagnose Chiari so I think the chances of finding someone in an ER are very slim. And you certainly wouldn't want just anyone working on you if it does turn out to be Chiari or something equally challenging.

Did you look at the website I mentioned? I think they go into some detail about the difficulty in getting a proper diagnosis. from that site...

Some people describe a Chiari 0 malformation. This is simply a Chiari I malformation in which the cerebellar tonsils do not protrude by the standard 5 mm. These are the patients that are frequently misdiagnosed because of the failure of the current diagnostic criteria to accurately reflect the underlying neurological problem. Many of our patients would fall into that category.....