More Chiari Questions

[williswolf]

We had Judah's first NSG appointment yesterday and he has officially been diagnosed with Chiari. He has a 5mm herniation. From looking at the MRI the doctor said there is some crowding. We also know that the symptoms that he has isn't coming from the underdevelopment in the brain. It is probably all being caused by the Chiari unless he has something else going on as well.

He has ordered a CINE MRI and also a MRI of his spine to see if there is anything going on there. While the appointment was somewhat quick I do feel  that he know what he was doing. We have another NSG appointment next week with a different doctor.

My question is this: If his spine is normal and there is no CSF blockage, but all of his symptoms are coming from Chiari then should surgery be done?

Also, can someone explain to me why Chiari symptoms are lifelong even if you have the surgery? What is the point of surgery then? Is there a point when surgery is too late or how early should it be done?

Thanks for all of your help. This forum has been such a big blessing.

Will

[rod44]

Many people go on to develop Syringomyelia (a Syrinx) in the spinal cord if the CSF is obstructed. As selma said Surgery is not a cure and needs to be a decision that is well thought out, this is why knowing as much as you can will help you to decide the proper decision. The one person you would normally go to for advice is your family doctor or GP, many GP's however dont know anything about CM, this is a sad fact. This is why you need to research not just the CM but the doctor (NS) you chose to treat the condition..      


Ray

[selmaS]

Hi...surgery is not a cure....once u have chiari u will always have chiari. Surgery is to help get more CSF flow as the diminished flow can cause many symptoms...and releasing the tight areas to allow the flow can let up on many symptoms but it  does not go away.

Surgery for chiari is most often elective...in that unless it is life threatening the drs will not say u must have this now.....they may help u decide to...but, it is not considered nething but elective.

When drop attacks, breathing issues begin...u want to seriously consider surgery...but, waiting until this point can also develop perm nerve damage too or the formation of a syrinx....

so a good chiari dr would be able to advise u as to what may be best.....

Do be sure to have him checked for sleep apnea as well.

"selma"