Update and syrinx question

[teraetx]

Hi all,

I was here some time back looking for some support and answers after I had a questionable MRI. I saw a neurosurgeon familiar with chiari; I had the cine flow and c-spine MRIs just recently with return visit today. He told me that I have a small chiari - 4mm or so - and a small syrinx. He says the CSF flow is fine. He wants me to come back in three months for more imaging and to discuss options.

My main complaints: ever-present headache, dizziness (comes and goes, sometimes is awful), blurry vision, pins and needles down one arm to fingers, mid-back and neck pain and excessive sweating. Neurologist has been trying to treat the headaches but all the combinations of meds haven't done much of anything. Ophthalmologist says I have enlarged optic nerve and wants to know what the neurosurgeon thinks. Neurosurgeon says I have to decide whether the symptoms are interfering in my life to the point that I want surgery...

but I guess my question is this: if the syrinx is 'small' and no obstruction in CSF, how could that be what's causing these symptoms? I had thought they do a decompression to relieve the chiari that causes the syrinx, but if I only have a small herniation and no obstructed flow, I'm not sure I understand how it would help or how the syrinx even forms if flow isn't obstructed. I did have spina bifida occulta as a baby but never had any diagnosed issues; could this syrinx have been there for a long time maybe?

So many questions! Thank you for anyone who responds - it means a lot.

[selmaS]

  Hi...you are right a NS can not help us with out doing surgery but a NL can do testing and monitor the situation...

If you feel your quality of life is to the point you need to move forward with surgery.....make sure your Dr is a true Chiari specialist and ALL related and non related conditions are ruled out b4 surgery is considered.

[selmaS]

  Hi and welcome back.....

Surgery is not done to relieve the Chiari it is done to restore CSF flow....

  A syrinx is typically found when there is a CSF flow obstruction....HOWEVER one can form at the sight of an injury.....

And a syrinx can be small and stay that way for a very long time, OR it can begin to grow very rapidly....so to monitor it is the best thing for now.

Did this Dr test you for other related conditions other then seeing a syrinx?

[teraetx]

Hi selma,
Thank you for your answer and your patience! I know I have a lot of questions...my NS isn't exactly a friendly guy to talk things through. I asked 'so this might get worse?' and he said 'well yeah'. The NS didn't do other testing but the neuro put me through all the vestibular/vestibulocochlear testing and whatnot.
Silly question: what can they (NS, neuro, someone?) do to help us if not surgery? I can watch and wait but what about my life in the meantime? I can't stay like this. :/
Thank you again.

[Initwithyou]

The Chiari Specialist I saw told me that many people get caught up on CSF.  If you don't have hydrocephally and a syrinx that is growing, CSF isn't really a problem...its flowing enough.  In my case it is the amount that my brainstem is being squished.  He also said like your neurosurgeon, it depends on how much the symptoms impact your life.  My syrinx has not grown in two years so it not my CFS and I don't have hydrocephally.  But my symptoms are too bad to live with so surgery number 2 for me.

[teraetx]

Thank you so much for your reply and sorry you are dealing with this! I logged in to reply after reading your answers but oddly the comment button didn't show up? Excuse my brain fog and thank you again.