What is this??

[AllTheRightShades]

4 years ago, I was referred to a neurologist in Oklahoma City and was told I had Chiari 1 malformation. Then after that he said I can continue with my normal doctor back in Lawton. I was then a few years later referred back to a neurologist but now it was in town. She never listened to me, especially with my meds. She did an MRI and said I don't have Chiari. I told her that I was informed that certain angles can make it look like it shrank or grew. She still brushed it off. I was hoping I would be referred to a neurosurgeon. I don't have any related conditions. She told me it was just my migraines. But I have been falling, dizzy, blurry vision, numbness in my hands and feet, leg pains that make it hard to walk, problems swallowing, and muscle weakness. I also have a constant pressure in my head. I'm going to my regular doctor to get referred back to my first neurologist for a second opinion.

Is getting a second opinion a good idea? Can chiari go away? I've stopped growing so I don't think so... I've never heard of it going away. Thank you.

-Autumn

[AllTheRightShades]

Thank you so much for commenting! I now have an appt. to see if I can get the referral done tomorrow. I found out today that the neurologist in Oklahoma City is 5 stars with patient experience of also 5 stars. The one I have now is only 3 stars with 2 1/2 star rating with a patient experience of 2 1/2 - 3 stars TOPS! It's it's amazing that they downgraded me that much. Lets just hope I get the referral. I'll keep you posted!

[kmelodya]

3 out of 4 of my brain and spine MRI's showed my chiari. Don't give up! Keep pushing until you get the right doctor!

[kmelodya]

The c-spine MRI showed my chiari. You should definitely have one done if possible. Your docs should actually have your whole spine done to check for tethered cord. Good luck!

[selmaS]

  U may be able to appeal to the INS comp to cover u out of state since u need a specialist for Chiari and one is not in state. Do ask ur mom to look into the appeal process.

I had a Dr tell me I had Chiari, I went to a local NS and was told I did not have it, then went to another one further away, he said I did, but it was above him and he had no idea to help me....so I went to a Chiari specialist and was able to get the help I needed.

The tests should be done in  the same machine as they have different magnifications....and the slices or angles should be the same....so using the same Dr or facility each time and making sure they are doing the test the same...once u go to a Chiari specialist they will know how to have the settings and angles done to get the best views..

U also need to see if u have related conditions as they can cause many of the same symptoms.

[AllTheRightShades]

My mom finally listened and is going to get copies of my testings. I have a C-spine MRI today.. I know I need to true Chiari specialist but the closest one is 4 hours away in Dallas and my mom is worried about all the money it will cost, seeing that my insurance only covers me in Oklahoma. I'm going to try and call my primary care doctor to get a referral back to Oklahoma City.

Also.. What will the C-spine MRI show? I'm scared that it will not show anything and that the neurologist in Lawton was right.. Maybe I don't have Chiari. But the one in OKC told me I did. When I see the neurologist in OKC.. Do I ask for the same angles that diagnosed me if they do another MRI or do they try new ones? Do you know of any angles that will show it in better lighting?

I am terrified that once I go back to OKC, they will also tell me there is no herniation. I still have the symptoms and will hopefully undergo more testing. I want this done and over with!! They are very close to admitting me to the hospital for pain.

Thank you.
-Autumn

[selmaS]

Do u have copies of ur MRI's on disk and copies of the reports? If not, call the facility that did the studies and request them...u may have to go to pick them up...going forward always request copies when u go in for testing...ALL testing, blood labs,EEG's , EKG's...what ever it is get a copy.

It is possible if the right angle is not done, the herniation can appear to be of a different length....so if u have had 2 MRI's it is possible that they are done from a diff slice and can appear to have grown or shrunk....

Imagine ur cerebral tonsils are like an upside down pear....slice into 3rds....if u look at either side slice they may be close in length, but the middle slice is longer...so if the first MRI looks to the left or right it may appear a small herniation, then on the next MRI if they look to the center it can appear to have grown....and vice versa...if they look to the center first, then the sides it can appear to have shrunk.

For these reasons it is important that the same magnification and slices are looked at each time a MRI is done.

[AllTheRightShades]

Could the doctor that diagnosed me have been wrong? He showed the MRI results and showed us the herniation. But my new neurologist showed that I don't have it. I'm afraid that if I go back to the neurologist that diagnosed me, he will also tell me I don't have it. The neurologist I go to now said that even with a 6mm herniation, they do not do treatment. I have all the symptoms and no other known conditions. Could my recent MRI have been wrong? Maybe the angles showed nothing wrong, or the ones from 4 years ago showed wrong? I have so many worries and doubts and honestly, I was looking forward for treatment to help my symptoms go away. My quality of life is severely effected.

[selmaS]

  Autumn No Chiari can not go away...it is a congenital malformation of the skull....now if u have low lying tonsils due to an injury, this is considered to be acquired Chiari and sometimes the tonsils retract on their own....but if u have true Chiari it will not go away....the symptoms do cycle so u can have times u feel better and then it can flare and it canl ast for days., weeks or months...as well as stay away for yrs at a time.

Many Drs, even NS's are not well informed or experienced with Chiari and Chiari related conditions...so a 2nd opinion is well worth it as is a 3 rd or 4th......u will need a true Chiari specialist...not just a NS....there is a big difference.

Just know u r not alone.