My son was diagnosed with Syringomyelia two years ago. It is located between T3 through T7. We were told to watch him and return every year for an MRI. The last visit showed it had grown now through to T9 making it between T3 – T9. He does have problems with his leg going numb and limps at times. However the doctors do not want to try and drain it or do anything continuing to say watch it if symptoms get worse come back other wise we will do another MRI next year.
So why?? Why not drain it? I have asked and was told it is dangerous at this time. What does that mean? Reason I ask is someone else we know has this and theirs is located at T9 – T12, they are only 2 but the doctors drained his.
Can someone help me understand fully so I wont worry so much?
Thanks for using the forum. I am happy to address your questions, and my answer will be based on the information you provided here. Please make sure you recognize that this forum is for educational purposes only, and it does not substitute for a formal office visit with a doctor.
Without the ability to examine and obtain a history, I can not tell you what the exact cause of the symptoms is. However I will try to provide you with some useful information.
I can certainly understand that you are worried given the extension of the syrinx. This question would be better addressed on the neurosurgery forum since neurosurgeons have more experience with these.
From what you have told me, there does not seem to be any significant clinical deterioration associated with this extension of the syrinx. Has his limping and numbness gotten progressively worse in the 2 years? If not, then this may be the reason they are not doing a surgical intervention.
The surgical interventions are quite invasive, options are decompressive surgery or even a shunt. However, these are associated with significant risks themselves like bleeding, infection, CSF leak, paralysis, etc.
I would advise maintaining a followup with your current doctors or seeking a second opinion with another neurosurgeon if you are very worried about clinical deterioration
Thank you for this opportunity to answer your questions, I hope you find the information I have provided useful, good luck
My daughter is going through same thing. She has had no treatment as of yet, but has MRI on yearly basis, but she has developed kyphosis which is a forward bend in the spine and I have since been told this condition goes hand in hand with their diagnosis. X
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