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Moyamoya Related Topics >> Moyamoya Related Information and Support >> So its surgery....
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Message started by Jane oznva on Apr 10th, 2013 at 12:15pm

Title: So its surgery....
Post by Jane oznva on Apr 10th, 2013 at 12:15pm
Well our first visit to the neurosurgeon 1st April here in DC suggested waiting 6 months and repeating the MRA on our 12 yr old son, who is asymptomatic of Moyamoya (its was picked up on MRI for his NF1 check).  However I sensed (the mum or nurse in me) that he was glossing over some of my very specific questions IE how severe were Oliver's vessels damaged.  He just kept saying "well there is no evidence of ischemia".  He was happy for us to get a second opinion, so after reading this great web support page I contacted Stanford Moyamoya clinic and fed ex'ed his reports by the Friday and by Tuesday 10am I had a call....that has put me in a spin.
Dr Steinberg's team have assessed Oliver's results and found a complete blockage of his Middle cerebral artery right side and seemed to be surprised he has never had any symptoms. He is recommending a "Combined direct and indirect revascularization procedure" in the summer holidays. 
My question is has anyones child been through this "combined" procedure and how did their children respond? 
Once again many thanks for your great information.  I could not believe how quickly they got back to us with a second opinion, just brilliant! 
Now it is a paperwork game getting our Australian Embassy to pay for it all, as we are here in the USA on a 3 year military posting.  I'm praying they don't send us home to have the surgery, when the top specialist are within reach in this country.
:o

Title: Re: So its surgery....
Post by hrsridermom on Apr 10th, 2013 at 10:15pm
Hello Jane,
I'm not sure where you are in Australia but I have a name for you.  My daughter had her surgery here in Florida with Dr. Stephen Lewis.  He's from Perth and has moved back there.  You can ask Dr. Steinberg about him...he knows him well.  Here is his information. I highly recommend him and my daughter loved him.  We have jokingly talked about going to Australia for her second surgery when she needs it.

He is in Perth, He has an office in the  Hollywood Medical Centre building.

Office #  61 8 9386 1444.

He would love to see moya-moya patients.

(He also still gets email at this email address: lewis@neurosurgery.ufl.edu)

Title: Re: So its surgery....
Post by Jane oznva on Apr 11th, 2013 at 11:10am
Many thanks for that Dr's information I will keep it for possible future use.  Unfortunately Perth is on the West Coast of Australia and we call our home town Brisbane, Queensland (East Coast). But I have found from this web page a specialist on the East Coast in Sydney. 
I am still hoping that as we are here for another 2+ years in Washington DC, we will be able to have the surgery with Dr Steinberg at Stanford.
But you have given me an idea to contact Dr Steinberg's rooms back and ask if they know any Moyamoya specialist in our home state in Australia, in case the Embassy request that we fly home for the surgery. I'm sure there is a close medical fraternity with such a rare disease.
Cheers.

Title: Re: So its surgery....
Post by mc823923 on Apr 11th, 2013 at 12:28pm
Jane,  Welcome to the family.  My daughter had her surgeries with Dr Steinberg.  It is not really 2 surgeries, he just does the indirect at the same time as the direct.  The direct gives immediate bloodflow and the indirect grows over the next 6-8 months.  But it is only one surgery.  On a side note, my mother was from Brisbane, she was a war bride during WWII.  Small world.  My prayers go with you during this time.  God be with you.  Margaret.

Title: Re: So its surgery....
Post by Jane oznva on Apr 11th, 2013 at 9:42pm
Thanks Margaret for the clarification and lovely welcome.  I have been so impressed with the speed at which the Stanford Moyamoya clinic staff have got back to us with forms, costings and reports to send into the Embassy.  I have had all the required paperwork done within one week!  Meanwhile I am still waiting for a written letter from the initial Neurosurgeon we saw here in DC on 1st April. I should know back from the Defence Health Team in Australia within 10 days whether they approve the surgery in California.  Fingers crossed. I'll post when I know more.
;)

Title: Re: So its surgery....
Post by dmm on Apr 11th, 2013 at 10:39pm
Hopefully your son will be able to have his surgery done by Dr Steinberg, but if not here are names of doctors in Melbourne Australia.
John Laidlaw at Royal Melbourne Hospital. I'm not sure if he operates on children. He operated on my daughter when she was 17 and he was great. I have been told by another Moyamoya parent that Andrew Danks at Monash Medical Centre is a paediatric neurosurgeon with experience with moyamoya.
Hope this helps.
Good luck and hope all goes well for your son and your family. Take care.


Title: Re: So its surgery....
Post by Jane oznva on Apr 12th, 2013 at 8:28am
Excellent, thank you. I will keep those Doctors names on file as we will need follow up as well when we are back in Oz. Good to know we have some experienced Moyamoya specialists as well.  My husband knows Melbourne well so I will google that Dr. Cheers.

Title: Re: So its surgery....
Post by maryanne on Apr 13th, 2013 at 4:44am
I am waiting on my second surgery with Mr John Laidlaw at Royal Melbourne and he is wonderful. Dr or I think it is Professor Stoodley is the go to man in Sydney. I have not heard of anyone in Brisbane. I hope you can have the surgery at Stanford and all goes well. Good luck.
:)

Title: Re: So its surgery....
Post by lynn on Apr 13th, 2013 at 10:29pm
I'm happy to hear that you have a plan.  How is your son handling his diagnosis and upcoming surgery plans? 

Title: Re: So its surgery....
Post by Jane oznva on Apr 16th, 2013 at 8:48am
Well to be honest, we haven't told him about the surgery yet until we know where and when.  He seemed to handle the Moyamoya diagnosis really well and explained his understanding back to the Neurologist so simply and cleary, the Neurologist was impressed.  I've read somewhere on this site, that some children feel like they wake up out of a fog, after finally having the surgery, with parts of the brain having been deprived of oxygen for so long.  So I hope this happens for Oliver.  He has struggled with learning difficulties all his school life, and is finally doing well in school.  So I am praying that the surgery all goes well and he starts the new school year with no further complications.
Surprisingly and thankfully, he has not suffered any major symptoms of Moyamoya, even with the total occlusion of the middle cerebral artery. 

Title: Re: So its surgery....
Post by Jane oznva on Apr 16th, 2013 at 8:53am
Thank you Maryanne, I have just read about Professor Stoodley and if it comes to surgery in Australia, I will probably go his direction as it is closer to Brisbane for my family to travel to. Still waiting on word from Defense...any day now!

Title: Re: So its surgery....
Post by Amit on May 2nd, 2013 at 8:02am
Hello Jane
You can get a third opinion from Boston Children's Hopsital. You being in DC, Boston is pretty close by. So even if you decide on surgery, might work out better logistically..
Good luck with everything..
Boston I heard is my better for children and Dr. Steinberg/ Standford is more for Adult moyamoya..

Title: Re: So its surgery....
Post by Jane oznva on May 24th, 2013 at 9:15am
:) :)Well the wait is finally over as we got an email late last night giving approval for us to have our son's surgery here in the USA.
I am just organising a phone chat with Dr. Steinberg to answer a few concerns we have, but am leaning Stanford way.  I have also had excellent conversations with Dr. Ed. Smith at Boston MM clinic, and both MM clinic techniques whilst different sound equally successful. However Stanford's comprehensive pre and post op follow up, especially with the cognitive testing (which for my son who has executive functioning difficulties) I feel we will be able to monitor his progress a little more closely in this area.
Thank you all for your thoughts and guidance to date.
Surgery will probably take place July 18. I'll keep you posted. Cheers. :)

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