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Newly Diagnosed (Read 2030 times)
aktham
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Father of 3 yr old Christian

Posts: 3
Arcadia, USA, CA, California
Gender: male
Newly Diagnosed
Feb 6th, 2006 at 11:11pm
 
My 3 yr old son, Christian, was just diagnosed with MM on Thursday 2/02.  We're being referred to Dr. Mark Kreger at Children's hospital in Los Angeles.  Dr Kreger along with Dr. McComb are head of pediatric Neurosurgeons at the hospital.  I've been told they see about 1 case a year.  The initial consultation is scheduled for this Wednesday.  Has anyone heard of or experience with either of the doctors?  I want to thank everyone in advance for the welcomes and a special thank to DJ for this site.

Thanks,
Albert
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itsme
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I love YaBB 1G - SP1!

Posts: 125
aliso viejo, USA, CA, California
Re: Newly Diagnosed
Reply #1 - Feb 8th, 2006 at 1:09am
 
Hello Albert,

I'm sorry to hear your son was diagnosed with MM but you came to the right place for support,information etc.
I also live in L.A. and went to USC & UCLA for treatment (of course I am much older than Christen) but decided to be seen one more time at  STANFORD with DR.STIENBERG, and oh what a differnce~He has also
seen many many children with MM ( as well as adults) I suggest you get a SECOND OPINION with Dr. Steinberg so you can at least COMPARE.....I did and it sure made a difference in my life.
Please don't get discouraged he just needs to get treated and we are all here for you and your family.

BTW Dr. Steinberg probably sees 3 or more MM patients A week NOT just 1  year.....IT MAKES A LOT OF DIFFERENCE.

Good luck and keep us posted.

LOL,
itsme
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Nancy_N.
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My daughter Mandy Has
Moyamoya

Posts: 664
Jasper, USA, usa, 436, 230, GA, Georgia
Gender: female
Re: Newly Diagnosed
Reply #2 - Feb 8th, 2006 at 9:04am
 
aktham,
                 Smiley Hi welcome to the site we are very supportive here and will be very helpful. My daughter had her MM surgery by Dr. Steinberg in 2003 both sides and it has worked well for her, she is doing 100 times better since surgery she still has life long lasting effects from all of her strokes but is doing well. It is so important with this disease to go to a MM specialist someone who knows how to treat the disease after the surgery, signs to look for ways to approach if there is a problem. Dr Steinberg has done hundreds of these surgeries and like itsme said he does 3 or more a week.
Any neurosurgeon can do a MM surgery thats what they do brain surgery but its the disease you have to know and the special anesthesia team to care for the patient. Its such a progressive and rare disease which not many Dr's know about that makes many people have a not so great experience when they don't deal with a specialist. My daughter was told after 4 severe strokes to not have surgery for a year imagine, and after we sent her films to Dr. Steinberg he set her up for surgery in a month, that right there saved her life because she would have never made it threw a year. It sure can't hurt to get a second, third however many opinions you need to to feel comfortable until you get an answer that makes sense to you. He has dealt with amny, many, children also Dr. Scott in Boston is also excellent and does more children than adults but seeing your Ca. I gues it would make sense to see Dr. Steinberg. His staff and right had person Teresa is great the whole Stanford experience was like none I've ever experienced at any hospital and I spent 5 years just about living in them with my son. I hope you think about it and ask questions galore if you need to thats what we're all here for, I think you'll find this site a huge and friendly help. My thoughts and prayers are with your family and son especially Christian.
                               Nancy Smiley
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