I am brand new here. My son was just diagnosed with Chiari Malformation 1 yesterday, he is 10months. He is not showing signs of anything being wrong as of now. He has to go back into the nuerologist at 6 months to check him again and then after that, provided evetrything is still going well, we will schedule as needed.
Can any moms of kids with Chiari please give me as much info as you can and tell your childs story. I want to know everything you want to tell me. I feel like Im looking for something specific that is going to tell me what to do and everything I read is up in the air- do the surgery if something goes wrong, dont because it could make things worse, just sit around and wait and see, go get a second opinion, etc etc.
I could really really use some support, help, answers, anything that will help me understand what Im looking at right now for my son and what things will be like 10 years down the road or as an adult. I dont even know, are kids with chiari expected to live as long as "normal" kids????
Thank you so much and I eagerly wait for you to reply.
Bethany
Mom of my honey bunch Caleb, age 10 months and 4 other sweeties.
I am a mother but I have Chiari Malformation 1. We have a lot of Mom's that I am sure will be sharing their experiences with you. Please know you can ask us a list of questions. We will be happy to answer them all. I do know the younger the person with CM1 the better the treatment outcome. I am sure Caleb is adorable. You are not alone here....everyone understands. I know you must be terrified. Caleb and your whole family will be in my prayers. You might want to join under the Group Header....The Parents Group. Please let me know if I can help you in any way.
I know this is a very scary time for you. At first the diagnosis is overwhelming. For each person the journey is different. Some, unfortunately, have a difficult time just getting an accurate diagnosis.
My daughter was diagnosed at 3yrs old and had decompression surgery at 4 yrs old. There are so many things to learn that it really isn't possible for me to list them all.
For us, there weren't any symptoms or signs of any problem. The Chiari was discovered from a CT scan done after a fall off my husbands shoulders. How did they discover Caleb's? We chose to have surgery after consulting 3 different neurosurgeons. Even though she had no symptoms, the Chiari had caused significant and extensive syringomyelia running nearly the entire length of her spine. In time, this will destroy the spinal cord. Each surgeon we saw explained that the risk of doing nothing was worse than the risk of surgery because once the spinal cord and nerves are damaged, there is nothing they can do to correct it. Two of the surgeons told me that if we did not do the surgery, in time, my daughter would be a quadriplegic. For me, there was tremendous value in getting more opinions. When you are dealing with something this serious, you really want to be sure.
Not everyone that has Chiari has syringomyelia. In fact, our first MRI was only of the head and did not show the secondary problem. Did the MRI include only the head, or the spine too? Also, It is always helpful to me to get the written radiology report for each MRI/CT scan done. It gives you additional information sometimes not mentioned by the doctor.
I found a lot of information by using google. I particularly like to use the "scholar" search. This will give you research and articles from medical journals. As previously mentioned in one of the other replies, one of the research articles I read indicated that children who have decompression surgery before age 8 are three times more likely to have a successful outcome.
Please let me know if you have any specific questions or if I can offer any other information.