MY SON IS 5 AND I SPOKE WITH HIS NEUROLOGISTS TODAY AND I ASKED HIM HOW SEVERE THIS SURGERY IS? HE DID STATE TO ME THAT ANY SURGERY IS SEVERE BUT THAT AFTER HE HAS THIS PROCEDURE DONE HE WILL NO LONGER HAVE ANY PROBLEMS?? I DON'T UNDERSTAND HOW HE CAN DETERMINE THAT? MY SON HAS BEEN DIAGNOSED WITH CENTRAL SLEEP APNEA AND HAS HAD SEVERAL OTHER SYMPTOMS. HIS NEUROLOGIST STATED THIS TO ME WITHOUT EVEN LOOKING AT HIS MRI REPORT. I WAS GIVEN THE RESULTS BY HIS PEDIATRITIAN THAT ACM1 WAS FOUND AND THAT IT WAS AT 14MM? CAN SOMEONE PLEASE TELL ME HOW SEVERE THIS IS ALONG WITH THE CENTRAL SLEEP APNEA? WILL MY SON HAVE LIFE LONG COMPLICATIONS? HE IS ALSO HAD PHYSICAL ISSUES SUCH AS BALANCE? WHILE SLEEPING AT NIGHT HIS LEFT HAND TWITCHES LIKE HE IS BEING ELECTRICUTED? I DON'T KNOW IF THIS IS ALL RELATED OR WHAT IS GOING ON. I HAVE DONE LOTS OF RESEARCH, YET I FIND DIFFERENT ANSWERS AND DON'T QUITE KNOW WHICH IS CORRECT? ANY INFORMATION IS GREATLY APPRECIATED...THANK YOU!!
Thank you so much Beeba and Emmaline for your support! I did not realize the seriousness to my questions ( medical wise) until after reading your response. I guess I am just a nervous wreck and a very impatient mommy at the moment, however I really appreciate your help and concern! Thank you!
Thank you Beeba for taking the time to inform me on what you are able to. And thank you Abby you are all so sweet! All the support and knowing I'm not alone just makes this so much easier! Titus just started kindergarten on August 17th. He had already been dignosed with Central Sleep Apnea and his pediatrician told me there was a possibility he could have Chiari 1. I resarched it and just had a feeling he had it. When I went to pick him up on his first day of school his teacher asked to speak with me and told me something was going on with Titus. She said that in order to get his attention they had to tap him on his shoulder cause he did not respond at all when they would call his name no matter how many times they called him. This has been going on at home for quite some time. She also said that he ended up with a 2nd grade class out on the playground. On the 23rd I recieved a phone call about his MRI report that ACM1 was detected.
To get to my point...I don't know in which direction to go at this point? I am currently working on my BA in education and I decided to take this semester off as I am a full time student. I am a nervous wreck right now and I would probably fail, my main focus is my son and getting him better. I felt it was best to keep Titus in school until furthur notice. I did speak to the principal and his teacher and provided all medical documentation. They have been very supportive and are providing necessary accomodations. I am still scared, should I send him to school? I felt I should keep his life as normal as possible. What precautions do I take at this point as far as activities? His neurologist did not set any limitations. It's just that I read so much about Chiari and his neruologist stated to me yesterday that it is not life threatening. To me it felt as if he was making it sound like it is not a big deal and once he has surgery everything will be fine. He ordered an MRI on his spine and he has an appt to see a NS on Tuesday the 4th. I could go on and on with questions...I'm sure you all know how I feel and I really appreciate your concern and help!! Thanks again!!
My heart goes out to you Mom. It's so hard when your kid is struggling. I'm a mom of a Type1 Diabetic. Your love for your precious son pours out from the page. I agree with all the very smart women that have already commented. Everyone who isn't a parent of child with Chiari is reluctant to give advice. Kids usually fair well because they heal faster and haven't had years and years of damage to recover from like adults do. Over promising by any doctor does sort of raise concerns. The most important decision other than deciding to have surgery is the doctor who will do it. Thankfully because Chiari is being diagnosed younger and younger there are a lot more pediatric Chiari specialists than there are adult ones. So finding a great one shouldn't be a problem. Everyones heart goes out to you and Titus. Keeping him in school seems like a great thing to do as long as they know what's going on and the extra steps they need to take to keep him safe. He shouldn't be in any danger of making things worse. The things that could do that are trama like a concusion or car accident....and no roller coasters or chiropractors. Other than that he should be okay. We are here for you and we are praying for you.
Wendy
Thanks again Beeba! <3 And also thank you Wendy! Honestly it is a blessing to have found this site...so many people that care, I am lost for words. Reading all these stories and seeing how much support and care everyone shares with one another, it is just amazing. It is such a relief to know I am not going to have to go through this alone! Thank you all!
Sue Ellen
It sounds like your MDs are leading down the proper path but, as everyone has commented, you want to see a neurosurgeon, who will make the decision concerning surgery.
Central sleep apnea is a common indication for Chiari decompression in children. children are less likely to complain of head-aches(or may just consider it the way everybody lives, if they know no differently). Clearly, surgical repair is not as good as never needing to have surgery in the first place. Younger children are more difficult to treat, primarily due to size constraints(it is more difficult to get an adequate decomrpession on a smaller foramen magnum). Boston reported their data a few years ago, with a higher re-operation rate in the under 5yo patient population. My review, reported at the annual spina bifida association meeting, found the age to be closer to 2years old. Regardless, at some age(to certain degree surgeon dependent), there is a higher risk of the need for re-operation(the bodies natural tendency is to close an opening that was not there initially and, if the decomrpession isn't as large, the bone may grow back).
As I read through that, I realized I probably delved into took much detail. The bottom line is, in general, I agree with your neurologist in that central sleep apnea + balance issues + 14mm of cerebellar tonsillar ectopia = decompression.
The reason for the different answers on line is because there is a difference in outcomes in kids(they tend to do better), there is a difference in risk of needing another operation(that also tends to be higher in kids), and there is a difference in indication for surgery(almost all adults have head-aches, many children do not).
Part of what you are going through now is the fear of meeting with a diagnostician(the neurologist) but still waiting to see the surgeon. Look through this site. There are many recommendations, not jsut for MDs but for ways to evaluate MDs. You want someone comfortable with Chiaris and children. There is a separate board for pediatric neurosurgery. www.abpns.org That web site will serve as a start.
You end with stating a number of symptoms and asking whether they are related to the Chiari. The answer, most likely, is yes. I have seen Chiari patients with all the symptoms you describe for your son.
I am so sorry that I wasn't on here sooner, but let me first say (and I know this is hard) but tak a deep breath) My daughter is 2years old and has had 2 cranial decompression surgeries. Life with Chiari's is not the end of the world, it is just moreof a juggling act. It is learning to take the good days and run with them knowing that a bad day could be around a bend and those days you have to just stop and relax. Balance issues, sleep apnea, are common, but as for what the future holds - well no one really knows. I have met parents whos kids had surgery and they never had another problem.
if you have any questions please ask.
Mom,
I am really sorry if you feel like the Adult Members have let you down. It is just so hard to understand what Children & Babies go through if you don't have a Chiarian that is a child. Adult symptoms and surgical experiences can be terrifying. No one wants to upset you or needlessly scare you. We all will be here for you & your son. You have received excellent information & advice. Please let us know how Titus is doing. He is such a cutie!!!
Tracy Z.
Thank you Dr. Trumble so much for the information, it is a BIG help. Beeba thank you for contacting Dr. Trumble! and thank you to Abby for all of the information!! Thank you to Lillyannes mom for your concerns and support! And also thank you to Tracy Z for your support as well!! My gosh I feel so much better than I have in the last month..all of you have been a great help and I am more at ease. I know you may not have all the answers, however I know that I am not alone and it make it that much easier!! Thanks again!