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Moya Moya specialists in India (Read 8054 times)
Ravinder Kumar
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Moya Moya specialists in India
Feb 17th, 2013 at 5:43am
 
I have read accounts of patients and their well wishers on this great forum. I wanted to approach you for guidance and actions to be taken for my 8 years old son Shivansh Agarwal. Let me just give a summary of what he has gone through in last six years or so.

Shivansh lost his vision when he has one and half years old (in year 2004) and that is when we came to know that he has brain tumor (CRANIAPHARYNGIOMA). He was surgical treated (and got his vision back). A post-operative MRI scan confirmed a complete excision of the tumour. However the tumour recurred in year 2009 when he went through another brain surgery followed up by Stereotactic Radiothereapy (SRT) in July 2009. However as the cyst did not reduce even after radiations, Shivansh was operated again in year 2010 for placement of Omaya reserviour. Year 2010 and 2011 were relatively stable when tumour shrank and he started having little normal existence. However since January 2012, he started having numbness and internal vibration experiences in hands and legs. He also experienced speech problems, logical issues etc. He was advised to go on anti-epileptics (Lavera initially, Tagretal now). He was somewhat Ok but kept experiencing these TIAs (as we know them now). The MRI, MRA and angiographs conducted in December 2012 have shown pattern of Moya Moya diseases and we are perplexed again as to how shall we proceed on the kid who already have gone through a very difficult childhood.

Are there Moya Moya specialist in India whom we can appraoch...shall we wait for some more time to get the scans done in another 3 months (as advised by Neurosurgeons here in India)...Request your guidance to proceed forward...

Thanks a lot.

Best Regards
Ravi
Phone - +91 9999731383
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hrsridermom
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Re: Moya Moya specialists in India
Reply #1 - Feb 17th, 2013 at 10:19am
 
Ravi, I am so sorry your son has ahd such a difficult childhood (medically).  Amit posted some information in one of the other section so I am going to put htem here to save you time in looking.  Dr. Khan is in Zurich but I think she is from India so maybe she has some knowledge of a good neurosurgeon there.  I don't know where you live so I hope the other list of doctors helps you find someone close to you.

Dr. Lokesh Lingappa (Rainbow Hospital, Hyderabad) He is a neurologist, but has contacts with neurosurgeons who can help. He mostly recommends Dr. Manas Panighari (From KIMS Hoppital, Hyderabad)
Drs. from AIIMS , New Delhi also perform the surgery I understand.
Dr Charudutt Apte: Shayadri Hospital, Pune, Maharashtra.


PD Dr. med. Nadia Khan
Specialist Neurosurgical Consultant
University Children's Hospital Zurich
http://www.kispi.uzh.ch/Kinderspital/Chirurgie/Chirurgie-1/Neurochirurgie/Moyamo...

nkwfns@gmail.com

Neurovascular Fellowship, Department of Neurosurgery, Stanford Medical University, Stanford, CA Jan 2008 August
2010 with special interest in Moyamoya and EC-IC bypass surgery.
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Amit
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Re: Moya Moya specialists in India
Reply #2 - Feb 17th, 2013 at 1:45pm
 
Hi Ravi,
First off, Stay strong.. Secondly, good luck with everything for your son.. Our son suffered a massive stroke at 6 months of age.
I am not aware of your son's background, tumors and other details you have mentioned, but there is a very very high possibilty that you son was mis diagnosed.. We had a very bad experience when we were in india(doctors telling us to loose hope, to remove his brain, to sympathy..)  Some said, just pray to GOD. Yes, we did and our prayers were answered.. We met Dr. Lingappa from Hyd, India and he had returned from forign lands and had seen moya moya before and he diagonsed it correctly as moyamoya.. the best of the best we had seen (neurosurgeons/ neurologists etc) were not able to diagnose the disease correctly..
If possible, send your MRI scan reports (the images that you get in a CD) to Boston Childrens Hosptial, Dr. Ed Smith, Dr. Scott. They have a weekly meeting I think it is on Wednesday, where they discuss such cases.. 
If not possible, send the MRI images/ CD's to Dr. Lokesh Lingappa in Rainbow Children's Hospital, Hyderbad. you can also send them to CMC vellore (really good doct) , also to AMIIS (you need to have a contact there) for 2-3 opinions.. We were also asked by our neurosurgeon to wait.. The reason is the surgeons are not that confident of surgery in such young patients, (our baby was just 6 months old, and we were asked to wait for a 1 year..) Boston childrens responds quickly (within a week).  You can also send to Standford, Dr. Steingberg and get another opinion..  to confirm if it is moya moya or not.. my suspision is that your son has been misdiagnosed earlier and all these symtons are due to moya moya.. Did you son receive any tramic head injury or something?  Feel free to reach out to me. I will try and call you at the number you have listed..
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Ravinder Kumar
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Re: Moya Moya specialists in India
Reply #3 - Feb 20th, 2013 at 1:38pm
 
thanks Amit and hrsridermom. This is valuable guidance. We are closely following up to get the DSA done in next week or so and then refer the results to Dr. Nadia Khan and others. Lets hope we take right decision for the kid, pretty soon.

Ravi
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bir
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Re: Moya Moya specialists in India
Reply #4 - Feb 2nd, 2014 at 9:28am
 
Dear Kevin; We are in touch with Dr.Khan in Switzerland and feel very fortunate for the guidance she is sharing for our son. Were you able to reach out to AIIMS in Delhi during your search?
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Rohit
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Re: Moya Moya specialists in India
Reply #5 - Oct 23rd, 2015 at 3:29am
 
Hi Everyone,

My Son of 1 year 8 months Suffered a Paralysis Stroke on Right Side and has been diagnosed with Moyamoya. Can you please share your valuable feedback regarding surgery and Neuro Sergeons in India.
What precautions and medicines we need to take care.
And any other valuable Information .

Thanks in Adv,
Rohit
+91 - 9873109956
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« Last Edit: Oct 23rd, 2015 at 3:30am by Rohit »  
 
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Young
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Re: Moya Moya specialists
Reply #6 - Nov 25th, 2015 at 1:48pm
 
My wife underwent EC IC bypass by Gary Steinberg and died 4 days after surgery.  I feel that this procedure is high risk and should be warned enough before the procedure.  Also I can trust their outcome data which is too good to be true.
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