mri

my son just hadd a mri. Thay said he had a tonsillar herniation of approx 9 mm below the foramen. There is crowding of the foramen magnum with effacement of the csf spaces surrounding the medulla and herniated cerebellar tonsils. I have know idear what that means. We have to go back in a cupple of weeks just cant stand the waite.  Please somone  tell me what the means thank you.  Missy

[tonya193]

How old is your son? What were his syptoms (symptoms) that alerted the doctors to do a MRI. My son was diagnosed in 2005 and we were never told how much he had in tonsillar herniation and then we were told to forget about it until just a few weeks ago when he had a one day procedure (upper GI) to see why he was having trouble using the bathroom and a regular basis and why he would get up in the mornings and be sick to his stomach for no reason and during his procedure (actually before) they noticed that his heart rate was running in the lower 50's and started looking in his chart and discovered the chiari and then start looking at it again. he had a MRI again this past friday and we are waiting for the results.

[youngwife]

Missy,
I am so sorry that your son has Chiari.  It is not usually a life threatening condition, but is very commonly a life-altering one.

How old is your son?

My daughter is 14, and was diagnosed with Chiari last year.  She had her surgery in October of last year, and we are so thankful to have had the option for surgery.

Surgery is not always required, though.  At the point that she needed surgery, she was not able to take care of herself, and lived in a haze of constant pain.  Her symptoms were a long list of woes.

Now, she is so much better, but still has Chiari.  Surgery is a treatment option, but not a cure.

My advice to you is to do tons of research.  Joining here is a great first step, but there is a lot of really good information for you on the web.  Here are some places to start:

www.chiarione.org
www.asap.org
www.conquerchiari.org
The Chiari Institute (Northshore in New York) has a lot of really good educational videos for Chiari patients.

Do become your child's advocate, and make sure that he is getting the best treatment.  Approaches vary from doctor to doctor, so you need to really be informed to that you will be able to recognize what is true and what is false.  

There are some wonderful Chiari experts in this field, and then there are some not-so-good ones.   Study up, and be proactive.  This will help you wait, and better prepare you for the road ahead.

If you have any further questions, I will be happy to help as much as I can.

Keep us posted! :-)

[Shane99]

     Good luck to your son (and you) during all of this. It can be very frustrating for an adult, much less a child. What I'm gonna tell you may be kind of scary, please be advised that your son may not have all of these, but I'm sort of giving you a basic run down of what Chiari is. You posted that you wanted to have explained what the doctors have said, so here goes;

     Basically, your son has a part of his brain (9mm worth - about half an inch) dropping past the skull into the spine. At 9mm, they may want to operate. Have they mentioned anything about that?
    
     The tonsil can cause quite a few issues - symptoms like dizziness, headaches, vision problems - well, the list is huge and I don't want to scare you unnecessarily, just pay attention to what he tells you and what you observe. Have they mentioned anything about Syrnixs (or syringomyelia)? Often this accompanies Chiari and is caused from the tonsil pushing down onto the spine. In some ways this is the worst part; It can cause paralysis.
    
     While Chiari can't be cured, it can be dealt with. He can have a full, healthy, active life, just make sure you have a good neurosurgeon that specializes in Chiari. Chiari isn't very common and some doctors have never even heard of it. I'm sure all neurosurgeon have, but that doesn't make them specialists at it. Look around, check these forums and other sites. A lot of us could recommend or not recommend surgeons. Ask lots of questions. Get a notebook, write down anything that you think of while you are away from the doctors or anything that you think may be relevent from you observations of your son. Take it to his doctors visits so you can make sure you have the questions answered and write down whatever you don't understand from the doctors (try to get it all explained - that's part of their job).

     Try not to worry too much. I know that's easy to say, hard to do, but try to focus your nervous attention to learning more about this. Heck, you can become your own specialist :). The first time I had ever heard of this was April 2nd, 2008, and since then I've had the surgery and am recouperating.