Chiari Malformation Community
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MOVED FROM WELCOME MESSAGE FOR jackerika

by jackerika

To: anyone
hi, my son was diagnosed with chiari 1 when he was 3. he's had surgery and everything went fine. he's now 6 and a few months ago he was complaining with pains in his legs.he had an mri and the results came back that they looked fine but the syrinx was still there. he did'nt have a syrinx before. the surgeon rang saying one surgeon said he saw a syrinx but he did'nt. he reckons it was what ever way the mri was taken.
can two surgeons see two diffrent things?
if it is a small syrinx what should be done?
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620923_tn?1405964489
Hi and welcome to the Chiari forum.

It is possible to need multipule surgeries.Do u know if the NS is a chiari specialist?

A syrinx, I am told can go undetected in an MRI and be seen while doing a surgery.

Find a chiari specialist to determine ur best course of action.

Please  keep us posted on ur  progress getting the medical treatment for ur son.

"selma"

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555358_tn?1292535661
Yes, reading an MRI can be very difficult. One doctor may miss something that another catches or one doctor may see a "shadow" but it turns out to be nothing.

A Chiari (or Syringomyelia) Specialist has the best chance of properly reading one in this type of situation. As Selmas suggested; make sure your NS and/or NL is a Specialist.

Even a small syrinx can cause problems - it's a blockage of the flow of spinal fluid. A slight blockage can cause issues. But more importantly, a small syrinx can grow.

Does he complain or show signs of tingling or not having the capacity to feel a change in temperature in his hands or limbs? These can be some of the first signs of problems. Ask him and pay attention for these kind of signs.
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Avatar_f_tn
Hi I have just been diagnosed with a syrinx 7mm in size.  I had a cat scan 3 months ago and it did not show up. I had an MRI a month after that and it did not show.  I had an MRI for the second time and was told that I had this syrinx.  I am not sure of how long it has been there however I am at the point now where my arm and leg on my right side often gets weak and I can barely lift it.  I am scheduled to see a neurosurgeon in 2 weeks and I have been fighting to see a specialist who deals with this type of problem often.  I will see what he says.  I never knew all this was going on and don't know if the damage is permanent however I have to continue to do what is best for me at this time.  I have 2 small children and it makes it difficult for me to care for them.  I am scared to death sometimes that while driving I may not be able to respond as quickly as I would like to so this if very hard for me.
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620923_tn?1405964489
Hi...Welcome to the Chiari forum.

I know it is possible to miss things on MRI's for several reasons...one, it is not what they were looking for, two; many drs and radiologists see congenital conditions as incidental findings and do not always report them.
So, what u r saying is that u did not think it was there , when in fact it could have been....take all MRI's along to the NS, they read the films themselves and do not care what the report says.
Make sure u r going to a NS that is a specialist in the field of chiari and syringomyelia.

Good luck and do post an update on ur progress.

"selma"
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Avatar_m_tn
Hi and welcome,
I have mild CM and a syrinx (7mm C5 >T2) and it was an incidental finding on an MRI, like Selma said get a NS with experience of these condition and you need to educate yourself so that you understand your illness.

good luck with your appointment and please keep us posted

Ray.
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