Chiari dilema regarding surgery - or not

[gzaimsdad]

My 22 year old son has been diagnosed with a Chiari Malformation Type I with a large syrinx.  He has almost no symptons and is in otherwise good health.  We have had completely different opinions from neurosurgeons from Dr. Bolognese at the Chiari Institute that says his surgery is "urgent" to two other neurosurgeons who say that the operation is unnecessary because he has no symptons at this time and that there is more risk in doing the operation and we should "wait and watch" for worsening conditions that would make surgery more compelling.  Is there anyone out there who would like to comment?  I am worried that he will develop some of the complications I have read about and will have more problems after the surgery than he does now.  Thanks for your help.

[selmaS]

I can only suggest u speak to members of the chiari forum zipperhead club....they can give a first hand account as to how they feel having already having the surgery.

"selma"

[gzaimsdad]

It's interesting that no one has ordered the CINE MRI. He has had a multitude of other tests.  It may be that there is obvious CSF back pressure and that the flow study would not add much.  We are re-thinking this and will see about getting it done.  We are looking at other CM specialists to get yet another opinion.  There is no clear data that surgery should be done for "prevention" of future problems.  I have read many posts on this site that describe CSF leaks post-op and many people whose symptoms have not improved after surgery or even have gotten worse.  Maybe my background in the medical field is making me question the whole risk vs. benefit equation.  At the present time my son's situation seems to me to be more risk than benefit.

[selmaS]

Hi...Do u know if ur son has a CSF blockage and ne other chiari related condition?

MedHelp has a Chiari forum and our members all have had this question to deal with myself included.

I am the Community Leader of the Chiari forum and invite u to join us and share ur questions and concerns.

selmaS
Chiari CL