Im waiting for my neurologist appt next week but my MRI shows Chairi and syrinx I know next to nothing on the syrinx can some of you share your knowledge of causes etc of these?? Thanks
Usually a syrinx is caused by injury or by Chiari. I was told that my syrinx is from Chiari. If it is from injury they may or may not be able to do anything. The doctor may recommend a wait and see approach or surgery depending on your systems, how they are progressing and affecting your life. The surgery can be implanting a shunt (which has a high failure rate) or the PFD surgery which can entail a few different options depending on the NS (amount of bone to remove, open dura or not, shrink tonsils, put in titanium plate, etc.). Ultimately the decision is yours if surgery is recommended. Only you can decide what you can and cannot live with.
I would recommend making a list of questions and taking someone with you to the doctor visit so you have two set of ears.
I have two syrinxes and undiagnosed Chiari. I've researched syrinxes like crazy. From what I understand, the syrinx is a fluid filled sac within the spinal cord itself. It forms because of an obstruction of CSF flow due to either Chiari, injury, inflammation/meningitis or tumor. It will almost always grow. The goal is to get rid of it...if it is causing severe symptoms. The only way to do this is to fix the problem of the obstruction of flow. In Chiari cases, you fix the Chiari and the syrinx should disappear or at least reduce in size dramatically. If due to injury, then most likely a shunt would be placed. If due to a tumor...remove the tumor. The problem with the wait and see approach, I think, is that it destroys the spinal cord. Therefore, leaving permenant effects. So, if you are having a lot of pain, in my logic, the longer it is there, the more it destroys and the higher your risk of having pain forever whether or not it is fixed.
Syrinxes form because of pressure build up within the spinal canal. The obstruction of CSF flow causes the CSF to pull to the point of least resistance which would be inside the cord itself. Once it starts flowing in there, it forms a sac or cyst and continues to circulate through that sac, which is why they almost always grow.
Wow, thanks y’all… I have diagnosed Chairi and they did also find syrinx, I have been sick for six months, started with some wicked headaches then I developed pneumonia that couldn’t be cured then they thought I had lupus but found out no lupus but the MRI showed Chairi and syrinx. Daily my symptoms are worse, I don’t have to describe the pain but it is lower in my spine also but the worst is the confusion, memory loss and disorientation, I am 39 but act like I’m an Alzheimer’s patient. I even carry a book around to remind me what I’ve done and what I’m supposed to do. It is a very scary feeling. Numbness, shooting pain etc… Y’all know the drill. My life has totally been put to a stop. Thanks so much y’all for the info :)). All information is soooo appreciated? How do you have in diagnosed Chairi? What does that mean?
when i say undiagnosed chiari...i mean that i'm sure i have it but have yet to find anyone to diagnose it. i cant even get my neurologist to phathom the idea because she has stated that she knows nothing about it but yet there is not one specialist in my area/state that she can refer me to. she is actually preventing me from getting to the mayo clinic. the whole thing is weird with her...I have had a really hard road for the last 3 years and it just keeps getting harder. Dr. Heffez at the Wisconsin Chiari Center is reviewing my records as we speak and i'm waiting to hear back from him. so sorry to hear about your chiari and syrinx...best of luck to you...God bless.
Good grief… It’s hard enough with a supportive system of professionals but you are having such a hard time and I’m very sorry. I hope you get the help you need and my thoughts are with you.
Brandi