Any experience w/ Dr Lazareff, or UCLA

[Chris5097]

My 6 mos old daughter has just been diagnosed with CM.  To what type has yet to be relayed to us, and we are still unsure if she'll need surgery.  However my neurologist recommend we start researching surgical procedures.  Has anyone ever dealt with Dr Lazareff at UCLA?  He seems very experienced with CM.  

[selmaS]

  Hi...well if members have had experience with a Dr and liked them they should be on our Drs list...so check there...then u can add the names to this thread if u do not see them...and those that have will reply....

The surgery is a risk as are all major surgeries...the problem with Chiari surgeries is using a Dr that is not that well experienced and  does not know to expect certain post op issues or even some issues during surgery....

This is y I always say make sure it is a true Chiari specialist and not a NS that will do the surgery or has done a few b4....

The Dr should be ruling out ALL related issues...sleep apnea, ICP, POTS, syringomyelia, ehlers-danlos and even some mineral and vitamin levels....

There is no way to know how a body will respond ot react to the drugs and meds used or the surgery itself....

May I ask what 4 Drs?

[Chris5097]

Thank you selma.  

My little girl started showing symptoms early on.  Her entire body would get very stiff, almost as a response to pain or discomfort.  The would aspirate easily.  Her head would lean to one side, and she showed left side weakness.  All this, accompanied by some developmental delays.

At first, she was diagnosed with torticollis.  As for the swallowing issues, she was scheduled a swallow study (which is coming up next week).  As for the developmental delays, the doctors were leaning towards CP.  in order to test for that, we had an EEG (which showed no signs of seizures) and then an MRI.   The MRI alarmed them, and a second flow study was done.  We just was told today that she had CM type 1, and did have some flow issues.  Our neurologist told us to wait for the surgeon to call, but start researching out neurosurgeons.  

I have done some brief research (in a state of panic) and have narrowed down to 4 doctors.  Is there any way I could include them in a post, and see if anyone has any experiences?  I just read on another forum where a little girl passed away during surgery, almost as if the doctors were negligent in their care.  Just trying to avoid landing a doctor like that.

[selmaS]

  Hi and welcome to the Chiari forum.

I am not personally familiar with all the Drs, but there is a list of Drs which is compiled from the members of Drs they have been to, treated by and liked. The list is not a referral but to be used by u as a tool to research Drs....

Not all on the list may treat pediatrics...and there r some well know institutions that may treat Chiari but not on a daily basis, so do look for a Dr that knows to look at ALL related conditions first B4 discussing surgery.

May I ask what symptoms ur child has presented with that testing was done?

Please have ur DD checked for sleep apnea, and tethered cord, and ehlers-danlos, and syringomyelia, ICP, POTS.....

Do not rush into surgery take ur time to find the right Dr....as this is a surgery with risks.