So nice to meet everyone! I'm a bit overwhelmed and don't know where to start. My son was diagnosed with chiari I malformation. I took pre-nursing classes to prepare for nursing school, but I decided to go into law instead, so thankfully I am able to understand at least what this is.
My son's name is Sebastian, and he is now 22-months-old. I'm being told everything from "it's nothing" to "so glad this was caught early, so he can begin treatment". I know that his tonsils (nubbins) on his cerebellum are 12mm. I'm pretty overwhelmed. Surgery is a possibility. He's seen all the specialists, and he now has to see an endocrinologist. He had a chromosomal micro array done a couple of weeks ago. His neurologist and pedi neurosurgeon don't want to make a final decision on surgery until the results of the test come back, but the geneticist doesn't understand why they're waiting.
Sebastian's demeanor is fine. He is behind in a few areas, but he's always smiling and laughing. He eats like a pig, jabbers my ear off , and is a pleasure and blessing to be around.
I don't know where to start. I'm so overwhelmed. I just want him to be okay.
Awwww momma. That is overwhelming! Im still new to this whole process myself. Sounds like you are doing everything right by getting him seen and evaluated. Hugs and positive thoughts!!!
Awwww momma. That is overwhelming! Im still new to this whole process myself. Sounds like you are doing everything right by getting him seen and evaluated. Hugs and positive thoughts!!!!
Thank you. I'm trying. Looks like we are new together. Prayers and thoughts are with you, and feel free to write me if you need to vent or talk. Keep your chin up, and smile. Sounds hokey, but it works for me.
I wont be much help as I was just diagnosed a few days ago, but I am a mommy of two so can imagine how scared I would be if this were happening to my child instead of me. I have been on the computer none stop since I was given the name "Chiari 1" looking up whatever I could. So far, it seems that The Chiari Institute in NY is the place to go. I am actually going to call my insurance tomorrow to see if they will over it as an out-of-network provider as the institue doesnt work directly with any particular company. Their website was very informative as well, providing videos that break everything down. I wish your son the best of luck and I am here if you would ever like to talk.
Hey Celia! Wow I can't believe how young he is! Is he experiencing any pain or symptoms that you can tell? I was diagnosed when I was 15 and had decompression the same year. I can't imagine going through what you are!
Celia, a diagnosis of chiari is overwhelming, especially when most of us had never heard of it before. And, it's so much harder when it is your children who have problems. I can tell you that I was just diagnosed in Dec 07 and had my surgery in Jul 2010. I lived a fairly normal life, worked, raised my children, retired, and had grandchildren before I was diagnosed. People can and do oftentimes live normal lives with some limitations in spite of the Chiari diagnosis. Knowing that helped me to not be as afraid of it as I might have been. It wasn't until I was involved in a bad car accident that my symptoms worsened so that I had to have the surgery. Before I made the decision to have surgery I did a lot of research and learning. A lot of the information on the internet is old; there have been improvements in the surgery over the years. My neurosurgeon uses a different approach for the surgery. He puts all the stiches on the inside and I didn't end up with a zipper scar. I had to have cervical fusion but because of the method he uses, I still have some movement in my neck. He's one of the best with Chiari surgeries and takes on the difficult surgeries. My thought are with you as you go through this difficult time.
Which part of the country do you live in? My neurosurgeon is Fraser Henderson, President of the Washington DC Chapter of the Chiari Foundation, a researcher in Chiari at Georgetown University Hospital, and he does these surgeries every week on people from all over the world. He does all the post opt followup himself as well. Some of the people who end up with him have had previous failed surgeries, some at the Chiari Institute. He has a very high success rate. He uses a different approach than the Chiari Institute. An extra plus for me was that he put all the stiches on the inside (no zipper) and I didn't end up with much of a scar. He's very compassionate. Other people on this website have used him as well and have been very happy with the result.
Shirley jessicaroan said:
HI Celia,
I wont be much help as I was just diagnosed a few days ago, but I am a mommy of two so can imagine how scared I would be if this were happening to my child instead of me. I have been on the computer none stop since I was given the name "Chiari 1" looking up whatever I could. So far, it seems that The Chiari Institute in NY is the place to go. I am actually going to call my insurance tomorrow to see if they will over it as an out-of-network provider as the institue doesnt work directly with any particular company. Their website was very informative as well, providing videos that break everything down. I wish your son the best of luck and I am here if you would ever like to talk.
Sorry to hear of your diagnosis. Would it be rude of me to ask your age of diagnosis, and what symptoms were you feeling that caused you to seek a medical opinion? Also, thank you so much for the recommendation of The Chiari Institute. I will research that tomorrow.
I am praying for you. God will get you and your family through this. You just keep hugging those gorgeous kids of yours.
Celia
jessicaroan said:
HI Celia,
I wont be much help as I was just diagnosed a few days ago, but I am a mommy of two so can imagine how scared I would be if this were happening to my child instead of me. I have been on the computer none stop since I was given the name "Chiari 1" looking up whatever I could. So far, it seems that The Chiari Institute in NY is the place to go. I am actually going to call my insurance tomorrow to see if they will over it as an out-of-network provider as the institue doesnt work directly with any particular company. Their website was very informative as well, providing videos that break everything down. I wish your son the best of luck and I am here if you would ever like to talk.
Hi, Alicia: Over the last couple of months I have noticed him throwing his head back and keeping it back - a lot. I'll be talking with his neurosurgeon soon, so hopefully we can get some answers on that.
If you don't mind my asking, why did your diagnosis come in your teen years. I'm finding more and more that people aren't getting diagnosed as young as my child is. What were your symptoms? Were you fine before and then all of sudden started exhibiting symptoms?
Celia
Alicia Roden said:
Hey Celia! Wow I can't believe how young he is! Is he experiencing any pain or symptoms that you can tell? I was diagnosed when I was 15 and had decompression the same year. I can't imagine going through what you are!
Ask away:) I had a lot of migraines and head pain while I was in grade school. I guess my symptoms didn't really show up until then. I was starting to throw up a lot from the head pain. There were days I couldn't move my head or turn my neck. It wasn't until it became a daily thing that we finally went to the doctors. Migraine problems run in my family. So the doctor gave me migraine medicine. It didn't do anything. He switched meds. Still nothing. Then one day I went in when I couldn't physically turn my neck. Thats when he ordered the MRI which is how they caught the Chiari and sent me to a neurosurgeron. We had surgery scheduled 3 months later.
-Alicia
celia said:
Hi, Alicia: Over the last couple of months I have noticed him throwing his head back and keeping it back - a lot. I'll be talking with his neurosurgeon soon, so hopefully we can get some answers on that.
If you don't mind my asking, why did your diagnosis come in your teen years. I'm finding more and more that people aren't getting diagnosed as young as my child is. What were your symptoms? Were you fine before and then all of sudden started exhibiting symptoms?
Hope this finds you well....under the circumstances...
From my understanding...Chiari Sx's presents itself in early childhood and between 30's and 40's...not to say that Sx's can show up at any age..like Alicia for instance....I had Sx's for many yrs but just put it off as migraines, being a klutz, depression ect..I had surgery 3 yrs ago and I am 49 now...there are just so many doctors out there that do not want to order expensive tests (MRI) even when there is reason to(IMHO)..maybe then , patients would be Dx'd earlier.