Hello I am 18 years old and was diagnosed with a Chiari I Malformation today. I have been doing lots of research on it and just wondered how probable is it that I will have to get surgery? I also just want to chat with people who know what I am going through. This is scary and it's nice to know I am not the only one out there who's been through this. Thank you!
Hello and welcome, to this wonderful community. Far as the surgery it all depends on the progession of the Chiari. Yes this is a great place to chat, cause they are going through or done been throguh what you have done. When you are doing your research remember it does look scary and some of it is, just remember we are all here to help in any way we are able. The biggest thing for me was knowing that someone was there. I hope this helps. Selma is a good one for knowledge.
The first thing you need to understand is that CM surgery is not a cure, surgery is recomended to help improve quality of life.and to prevent progression of the CM.
Have you had a full spinal MRI to rule out Syringomyelia and tethered cord.
Syringomyelia is a fluid filled cavity or cyst in the spinal cord, it is often found in ppl with CM and is thought to be caused by an obstruction of the Cerebrospinal fluid (CSF) at the site of the CM. A CINI MRI (Flow Study) is important to check for obstruction.
Rod44 and frankie_rush did a great job welcoming you....and as rod mentioned surgery is not a cure and not all with Chiari need surgery, but if u went for testing, u must have symptoms that r driving u to find answers.
May I ask what all u r dealing with...
U will want to know if u have a CSF obstruction and overcrowding....if u have a syrinx(syringomyelia) that is a good indication there is an obstruction,.
Testing that needs to be done now, is to help see how ur chiari is affecting u and ur overall health....this helps determine if u need surgery, BUT b4 u discuss surgery or consider it, u will want to see a few diff Drs, compare them and make sure ALL related conditions are ruled out as many can affect how u feel and heal post op.
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