Questions, Questions and more questions

My daughter was recently diagnosed with CM1 and we are still waiting to see the neurosurgeon and have a lot of unanswered questions. I've been reading every bit of information I can and have so many questions I really don't know where to begin....Our paed says she will have to do another MRI most likely to see how her spine looks, as she really tilts her head to one side and she does this strange movement with her legs when sitting on a bench or chair for too long. I will try to upload a video of it as soon as I can figure out how too. I don't completely understand what everyone means when they say they have a 7mm for example? Is that the size of the herniation or how far down the spine it goes? I'm so confused, this wait for the surgeon is driving me crazy.

Sorry for the long post, I'm just really lost.



I will use myself as an example. Mine is 7.8mm Which means the cerebellar tonsils have fallen, or herniated through the foramen magnum of the skull into the spinal canal resulting in a condition known as chiari malformation. While the size of the herniation itself does not give a reason for surgery. It can block or diminshed the CSF flow from the spine through the brain and back again.... all of these things together will cause symptoms and sometimes will cause what is called a Syringomyelia or a "Syrinx". Which is a cyst within the spinal canal. Neurosurgeons use different things for their reasoning to perform surgery. To tell you the truth, I'm really not sure where that reason starts. It's a judgment call I guess. I myself have not had surgery, I will wait until my symptoms become unbareable. Somedays are much worse than others.. but I have more good than bad so unless this changes I will not have surgery.

I hope I have given you some answers.

Lori D

Hi Amanda.....

So sorry your daughter is having to deal with this Chiari is she feeling today???

Lori D. gave you excellent I really cannot add anything to Lori's reply.

Just know that we are here for you and your daughter. You have to be careful and make sure you are caring for yourself during this stressful time....Easier said than done, I know..but you must take care of yourself...Moms' always seem to put themselves last!!

Keep us updated, ok???




It is hard enough to have Chiari but I think it has to be harder to watch your child deal with it. Both Lori's have given some good advice.

The only thing I can add is if it is at all possible, try to see a Chairi Specilist. I went to Dr Oro after seeing 3 NS here in TX. I had surgery 5 months ago and feel better than I have in years. I know 2 kids that go to high school with my daughter that have also went to Dr Oro and they are doing great.

Hang in there because I know the waiting is unbearable at times.

Many Blessings!


It's been really rough, in and out of hospital for respiratory trouble, always has headaches, screams and tantrums alot, over the smallest thing like her sock seams are not comfortable. It's really difficult, Ashley is 4th out of 5 kids and everyone is feeling the pressure. The diagnoses has brought alot of light to the situation but so many new worries. Her school has an emergency plan in place now for her because they are concerned with her safety during gym and out door time etc. Her doc explained to us that even coughing or sneezing can worsen the pressure and until we know exactly the full extent of it we have to be very cautious. The past 2 days she has been complaining alot of head hurting and she is coughing alot, her asthma meds do not seem to relieve the coughing either and i'm not trying to worry to much because it's most likely just a cold coming on but can't help but wonder with if every cough is something going to happen and block the CSF flow? I know i'm probably worrying myself sick but her doc had stressed that if she shows any worsening symptoms I was to waste no time taking her to emergency. We will be seeing the neurosurgeon at the Hospital for Sick Children here in Toronto but I don't know of any Chiari specialists here. Thank you everyone for the loving support <3

Got a call from sick kids today, Ashley's appointment/consult with the neurosurgeon is March 16th! I am guessing that is when they will tell us how big the herniation is and whether or not they are going to do a spinal mri? I think I'm prepared, have a list of questions for them...they only trouble now is coping for a few more weeks especially since her appointment falls on the last day of March break, guess the benefit is with all 5 kids home time will pass quickly....I hope


Hi Amanda,

I am so glad you got an appt. I found it is best to make a list of questions you want to ask and take a small recorder so you will remember everything. They may give you a lot of information & you will want to go home and do research.Please keep us updated on how your daughter is doing. Everyone here understands & is very up lifting.

God Bless,

Tracy Z.