Our beautiful 5 year old daughter was diagnosed with Type 1 last Thursday and we are now waiting for the Neurosurgeons appointment to see what happens next. We have been reading up on several pages on the Web n too be perfectly honest it’s scaring us. We don’t know what’s coming next or what to expect. Is their someone on here that can help?
Matt, I’m sorry your little girl has this diagnosis, but glad you found us. You are definitely not alone, there are many parents on this site. You are doing the right thing by researching and learning as much as you can. That’s great you are lined up to see a neurosurgeon- they should evaluate her physiology and signs and symptoms. As a starting point you need to know that there are neurosurgeons (NS) who specialize in peds Chiari. There are NS who perform the Chiari decompression on a regular basis and have more extensive knowledge of the condition and all of the other conditions that can show up along side Chiari. Not saying that surgery is inevitable, just want you to get her to the most knowledgable surgeon for the best advice and best options.
There are common themes that come with Chiari as far as related conditions/ diagnosis. Not trying to overwhelm you with this, just want you to be informed. Not all chiarians have these additional conditions, but many of us have several of them.
Sleep apnea
Vitamin d deficiency
Magnesium deficiency
**Ehlers Danlos syndrome- can cause cranial cervical instability. CCI further compresses and damages your spinal cord and has the same symptoms as Chiari. This should absolutely be ruled out. If you have EDS and CCI, get the decompression surgery done without correcting the CCI, and continue to have the same symptoms or worsening symptoms- a second surgery will be required to correct the CCI.
Dysautonomia
Tethered cord syndrome
Please let us know what questions you have and we will do our best to help.
Jenn
Hi Jenn
Thanks for the info, I am still trying to get it all into my head, I am trying to get as much as possible but most of it scares the living crap outta me, how do we decide if emily needs surgery n are there more problems to it as she is only 5 Years old?? I hadn’t even heard of this before last Thursday!
My best advice is to seek a few opinions from NSs who are true Chiari specialists. They will either recommend surgery or not. And they should absolutely rule out cranial cervical instability, dysautonomia, tethered cord and sleep apnea. My heart goes out to you, I’m sure you are stressed out and worried about how all this will come together. Just pace yourself and it will all get pieced together. Most cases are not emergencies, so you will, most likely, have time become knowledgable about your daughters case and find the best NS. We have a member recommended doctor list on this forum if you are interested: click member services, click doctors.
Thankyou, your advice is definitely alot to take in and very comforting
Sorry your daughter has been diagnosed - I also have the same thing happening. I'm not sure what your next move with doctors are - we go in June (13th) for another MRI to find out about fluid on my 5 year olds spine and if it has gotten worse. That will determine surgery or no surgery. I will be lifting you up in prayer and your daughter! Wish I could give you more information but right now I don't have any - after June I may be able to be of more help! Good luck!