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Medical help for MoyaMoya in India (Read 6941 times)
Reena Noel
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Medical help for MoyaMoya in India
Jul 16th, 2011 at 2:07am
 
Hello

I am Reena and I am from India. My niece is 16 yrs old and she was diagonised with MoyaMoya in the age of 8. She is under medication all these years and she is by God's grace has not got into any serious implications of Moya Moya

But we like to get her off those medications and we want her to get her off from the dangers of this disease.

I like to know if there is any medical help in India?

Please help me in this cause. This will help not just my niece but all people in India with MoyaMoya not aware of medical help for this disease
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mg12061
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Re: Medical help for MoyaMoya in India
Reply #1 - Jul 16th, 2011 at 10:40am
 
    Welcome to moyamoya.com. I'm so sorry to hear of your nieces diagnosis. I have to applaude you on being such a great advocate for your nieces health care. I have no idea of Dr.'s in India although someone here may. My advice (not knowing any experts in India) would be to get in touch with either Dr. Scott or Steinburgh. Dr. Scott did my daughter's surgeries. They are both experts here in the US and are wonderful at consulting with anyone who has MM or with their Dr.'s. Maybe they even knos of a Dr. close to you. They both have had patients travel to them from around the world. (they are that good!)You could e-mail the  both, from experience and hearing from others they usually get back to you pretty quickly. Any scans your niece has had can be sent to them if they ask to see them. I have Dr. Scott's email address because he is my daughter's neurosurgeon but you can also find Dr. Steinburghs on this site under Links.
Scott, Michael
E-mail Address(es):
  Michael.Scott@childrens.harvard.edu
  I will keep your family in my prayers and please keep us posted.
Mary Grace
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hrsridermom
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Re: Medical help for MoyaMoya in India
Reply #2 - Jul 18th, 2011 at 8:46pm
 
OK. This is a real longshot but Dr. Nadia Khan, who has worked with Dr. Steinberg (I think), may know someone.  Here is a link that will help you contact her.  She is from India (again I think) so maybe she studies with someone who can help.  Where in India do you live?
http://moyamoya.net/index.php?file=16&lang=en&ses=5bf9f11b59c8
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Destin's mom
 
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Reena Noel
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Re: Medical help for MoyaMoya in India
Reply #3 - Jul 20th, 2011 at 2:05pm
 
Hi Mary,

Thank you for the email id. I am contacting him reg my niece. I'm little worried about the expenses part if its in US.

I am in Tamil Nadu in India.

Thank you hrsridermom
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hrsridermom
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Re: Medical help for MoyaMoya in India
Reply #4 - Jul 20th, 2011 at 2:17pm
 
Hi Reena,  Dr. Khan may be in Switzerland.  I am hoping that she may know of a doctor for your niece in India.  I was in India in 2008.  How far are you from Mumbai or New Delhi?  I also visited Matheran, Jaipur and Agra.  Had a wonderful trip.
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kevinbayern
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Re: Medical help for MoyaMoya in India
Reply #5 - Sep 20th, 2011 at 8:21am
 
Hi there,
I'm also a student having moyamoya from chennai,India.I got to know about my condition when I had a stroke last year.I'm 24 years old.I can understand your problem first hand, since my doctors in apollo hospital India said there was no possible treatment for this.But by God's grace I'm a student in Germany and Prof.Vajkocsy from Charite Berlin is an expert in surgical treatment of Moyamoya,especially in children.He has vast experience in this surgery.Luckily I was insured in Germany so my expenses was covered.But I'm Pretty sure treatment in Germany will be only a fraction of the cost in US.They have an international patient facility and they speak reasonably good english.My surgery was last month and I have no complications and can lead a normal life again,Praise God. I searched all around in India but could find no one who would do the surgery and my doctors in India were also of no help.Its better to get treatment as soon as possible.Feel free to mail me at kevinbayern@gmail.com.I would be more than happy to give you the contact details or answer your questions.All the best for your niece.
Kevin
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