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lynn

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what if the surgeon says, "no surgery"?
Jan 28^th, 2011 at 1:09pm

We had our first visit to the neurosurgeon yesterday. He is of the opinion that my son may not need surgery. He plans to meet with the neurologist and radiologist sometime over the next couple of weeks to discuss it and will then call with their conclusions.

If he comes back and says that we don't need to do surgery, what would you all suggest I do?

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dmm

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Re: what if the surgeon says, "no surgery"?
Reply #1 - Jan 28^th, 2011 at 6:32pm

I would suggest that you get copies of all your son's scans, tests, etc and make contact with either Boston or Stanford and ask whether they would review them for you.
We live in Australia and Dr Steinberg had a look at my daughter's scans and gave his opinion. For me it was very reassuring to have an expert give a second opinion.
If you do it now, hopefully you will have their opinion back before you hear the conclusion from your son's neurosurgeon.
Waiting is hard. Good luck.

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Skay5709

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Re: what if the surgeon says, "no surgery"?
Reply #2 - Jan 28^th, 2011 at 10:58pm

I agree with dmm. You need to get a second opinion on your son having surgery. Some doctors take the wait and see approach. That is not an option for those of us who have mm. You can contact Boston or Dr. Steinberg if you like. I see you are from Michigan. I am in Iowa and had bypass surgery in 2003 at the University of Iowa Hospitals by Dr. Patrick Hitchon, neurosurgeon. Take care, Sharon

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STrantas

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Re: what if the surgeon says, "no surgery"?
Reply #3 - Jan 29^th, 2011 at 10:34am

I agree with everyone who have already posted a reply. First, always, always get a second opinion. Second, if your son has a confirmed diagnosis of Moyamoya, the only treatment to prevent strokes or seizures is surgery. If your son is healthy otherwise, he has the best situation for surgery. Ask yourself, what is the doctor waiting for? A stroke? A hemmorage? Seizure? I would go to Dr. Scott at Boston Children's or Dr. Steinberg at Stanford. Doctors who take the wait-and-see approach when it comes to MM are not that familiar with MM to begin with. Go see someone who is.

Good luck!

-Shari

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Mayhem MM.com Sponsor Offline diagnosed 1996 Posts: 92 Rochester, USA, NY, New_York Gender:	Re: what if the surgeon says, "no surgery"? Reply #4 - Jan 29^th, 2011 at 2:20pm I also agree with what everyone has said. I sent my films to Dr. Scott, after contacting him, for a second opinion, even though I was not a pediatric patient, and went by his advice.
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lynn

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Re: what if the surgeon says, "no surgery"?
Reply #5 - Jan 29^th, 2011 at 6:28pm

Thank you all. The surgeon has never had a patient with moyamoya. He is confident in his ability to do surgery if necessary, he says, because the surgery is very simple. There is pretty much NO WAY he would get his hands that close to my son's brain!

My husband and I have talked it over and I will be calling to get a copy of the tests and get hold of Dr. Steinberg for his opinion.

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pamR

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Re: what if the surgeon says, "no surgery"?
Reply #6 - Jan 29^th, 2011 at 11:29pm

Glad to hear you are not letting someone with NO experience near your child. We live in Pa and took our daughter to Boston for her surgery. Never a doubt in my mind that she was in great hands there, from our first consult. You will feel so much better after speaking with an experienced doc. ALL our questions were answered. Best of luck to you and your family. Also, we were lucky to find an amazing neurologist who happens to be the head of the pediatric stroke center at CHOP. Keep looking until you are comfortable. You will find someone!
Take care,
Pam

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STrantas

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Re: what if the surgeon says, "no surgery"?
Reply #7 - Jan 30^th, 2011 at 1:39pm

lynn wrote on Jan 29^th, 2011 at 6:28pm:

Thank you all. The surgeon has never had a patient with moyamoya. He is confident in his ability to do surgery if necessary, he says, because the surgery is very simple. There is pretty much NO WAY he would get his hands that close to my son's brain!

My husband and I have talked it over and I will be calling to get a copy of the tests and get hold of Dr. Steinberg for his opinion.

Lynn - definitely on the right path! I went to a neuro for a second opinion who hadn't had a MM patient either...he actually looked at my scans, took them in to his collegue, and said "Look, have you ever seen a moyamoya patient's scans?" Uh, my reaction? Thanks, but no thanks! Needless to say - that was my only visit to that neuro!

By the way - the surgery may be "very simple" as he states - but there is so much more to it! I don't think anything is "simple" when it comes to the brain!

Way to go on making the right decision! Keep it up! And Good Luck!!

-Shari

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A smile is contagious...start an epidemic!
Dr. Scott did my surgeries - 12/29/03 and 1/5/04

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Becky Old-Time Poster Offline Stroke10/03, Diagnosed6/04, Unilateral Surgery9/04 Posts: 532 Minneapolis, USA, usa, 303, 84, MN, Minnesota Gender:	Re: what if the surgeon says, "no surgery"? Reply #8 - Jan 31^st, 2011 at 5:15pm You made the right dessision. Good luck! I know Dr.Stinberg will be able to help you or point you in the right direction. Becky
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cri4315

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Re: what if the surgeon says, "no surgery"?
Reply #9 - Feb 3^rd, 2011 at 8:04pm

Great Idea for the second opinion I really wish I would have thought long and hard before I just jumped into Surgery. My Dr. told me after my surgery that I was his second time doing the surgery. I had surgery Aug 23rd 2010 and I am still having skin Grafts to repair his mistakes. I will not have hair for at least a year. DO YOUR HOMEWORK before surgery

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