My daughter recently had a CT scan and was just diagnosed with Chiari Malformation 1 with 1.3 cm. Today she had an MRI and is scheduled to see a Nerosurgeon after the first of the year. I have read a lot of informaiton on line about Chiari and understand what it is, but I am wondering if 1.3 cm is considered good or bad? She has been suffering from headaches and dizziness for a couple of months now and it just keeps getting worse. Any in sight you can give me would be appreciated, her appointment is still a month away.

Welcome to NeuroTalk!

I'm sorry for your daughter's diagnosis. I hope the surgery will fix the problem so her symptoms will improve and/or go away.

There are lots of nice folks here and I hope it will help you to read about other people's experiences with this.

Do everything you can to get her a neurosurgeon that specializes in chiari malformations....really....especially a pediatric neurosurgeon if your daughter is still that young. My 12 year old daughter was diagnosed April 2009 and had a decompression/duraplasty in July ..did awful..then had a repeat procedure in October...doing wonderfully. The second procedure was at UCLA with Dr. Lazareff. I would highly recommend him and his staff, which includes an education specialist I wish I had the first time around...she took care of the home disability teacher request, etc. It was also very, very important to have her in a pediatric ICU after surgery....or at least a neuro ICU. We have an HMO and going to UCLA was covered just as well as our local community hospital!

I don't think it's so much how many mm the herniation is ...so much as the symptoms and the degree of syringomyelia/scoliosis. If your daughter has headaches and dizziness then she might have CSF flow blockage and you just don't want to mess with the brainstem being squashed.

I'm so sorry this came up for your daughter, also. Learn everything you can about the surgery....what type of replacement material is planned for the duraplasty...how they monitor for scar tissue, etc.....followup is ver important and neurosurgeons and their offices are not famous for that.

I would proceed very carefully into ANY type of surgery, especially at her age. I am glad that your daughter is doing well, however there are many exceptions, as I am sure you also know. RESEARCH and absolutely no surgery w/o a second opinion. Unless there is a critical rush, I would advise waiting. There is an increasing move toward the research and options. The ASAP (American Syringomyelia Alliance Project) has the most cutting information at this time and I would spend some time there before any procedure. We as parents want our kids fixed as quickly and easily as possible, however there is NO quick fix for this disease, even after surgery. It just is not that type of condition, the longer you delay surgical intervention the better. check also into research studying natural measures to reduce spinal fluid pressure. it may not fix the mechanical issues right away, but it will delay mechanical intervention until it is absolutely necessary. that will allow you time for research and for finding the best doctor that medical science can provide. ~WyndyBelieves~

My 12 year old daughter was also diagnosed with syringohydromyelia in her spine between T8 and T9. She is having severe headaches and dizziness. She has had 3 X-Rays and 2 MRI's.

The next step is going to Seattle Childrens Hospital. The more I read the more worried I'm getting. She has been a competitive gymnast for 4 years now. She is very flexible and strong. She is currently competing ( or was ) level 7.
States is this weekend and it looks as if she will not be going. She is very upset. She was going to quit gym and just do junior rodeos, wanted to end gymnastics strong. Safety and health are far more important! Has anyone had this disease and if so do you have any info or anything you could share with us?

Thanks, kim

Some good news, is that because of her age she will bounce back quickly, my Goddaughter was Rx at age 12 and 3 months later was back doing Gymnastics and cheerleading, please...do your homework and see more than one Neurosurgeon, I'm on my fourth surgery and first shunt, but I was Rx very late.. so good luck.