Conflicting opinions from NS's

Have a child with SM/Chiari? Share issues unique to children and their caregivers.

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Conflicting opinions from NS's

Postby josuesmom » Fri Mar 05, 2010 7:47 pm

Ok, my son josue (10yo) is scheduled for decompression surgery on March 15th at Barrow's,
After meeting with my sons neurologist who is from Phoenix childrens and having her see that my
sons neurological symptoms are getting worse she recommended a NS from Phoenix childrens. She
said that she would send him the images and reports that way he could get my son in there by this
coming Monday, well, his assistant called me earlier today and said that this NS did not see what
everyone else was seeing and that the syrinx was really too small to be worried about and that there
was no need to come in and see him. HUH???? he didnt even meet my son, what about all his symptoms?
what about the fact that 2 other people do see Chiari and a syrinx ? Sooo confused, I feel like I should
just stick to Barrows but am not really comfortable with their experience. Am sending his stuff to DR. Menezez
on Monday.

Any thougts?

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Re: Conflicting opinions from NS's

Postby jupes » Sat Mar 06, 2010 12:05 am

Hi Esmeralda!

Sorry you are dealing with all this conflict. These Doctors may be very good and experienced but it sounds like they are not experts in CM/SM. Many of us have been in similar situations and have had to seek second/third opinions.

Sounds like you have many doubts and unanswered questions. Could you wait and see what Dr Menezes or another experienced expert has to say about your sons scans before rushing into surgery on March 15th? CM Decompression is usually not an "emergency" surgery! You may feel more comfortable having your sons surgery done by an expert who does many of these rather than a NS who only deals with this on occasion! Would hate to see your son go through this surgery and then need it repeated! Some NS will not take them on as a patient if another NS has already performed the surgery! You may decide to stick with your current NS but at least you will have peace in your decision if an experienced expert is in agreement with the diagnosis/surgery plan!

Have you contacted Dr. Menezes office yet? He usually requires a Doctor referral and likes to see patients in person rather than just viewing a MRI! Each CM case is different and many NS prefer to examine your child in person rather than making a recommendation based on a MRI scan. Most NS are busy and an appointment could take a few months too!

If you don't hear from Dr. Menezes soon or are unable to get an appt. you may want to consider one of the other Peds NS mentioned in the other post! Dr Frim (university of Chicago) is excellent and deals with a lot of out of state patients too!

Good luck and keep us updated!
14 yr old DD with CM 0/SM and mild scoliosis.
"Trust in the Lord with all your heart and lean not on your own understanding" Proverbs 3:5
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Re: Conflicting opinions from NS's

Postby lcolangelo » Sat Mar 06, 2010 9:01 pm

I agree about sending your films to another dr. I hope dr. Menezes gets back to you quickly-- just an FYI-- his physicians assistant's name is Lonnie Billeyu-- she's actually a lot easier to speak with than actually getting the doctor--she usually communicates with him and then gets back with you. it is a wonderful facility-- I know there are many others out there too== you're in my prayers!
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Re: Conflicting opinions from NS's

Postby Sara » Sun Mar 07, 2010 9:07 am

I don't know who any of these doctors are, but a good rule of thumb to follow at any juncture is anyone willing to make any decision for or against surgery without examining the patient is not practicing good medicine when it comes to CM/SM.
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