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Amit

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First year follow up at boston
Aug 8^th, 2012 at 3:08am

Hi all,
Planning for the first year after surgery follow up in Boston. We stay in San Diego, CA but had the surgery done on our 9 month old son (at the time of the surgery he was 9 months)
Planning his firs year post surgery follow up.
What do the doctors at Boston Children's really do at the first year follow up? I am thinking of taking the MRI here in San Diego, CA.
The neurosurgeon in San Diego prefers that we do a CT scan instead of the MRI scan, but Dr. Scott suggests MRI scan.
Any advice on which Doctor to follow? Also is it really worth flying all the say to Boston just for the MRI? was planning to do the MRI here in San Diego and then send the CD over to Dr. Scott. for this will have to go against what the Doctor in san diego suggests (CT scan instead of MRI)
Please advice on your thoughts..
Amit

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hrsridermom Senior Poster Offline mother of 19 yr old daughter with MMD Posts: 292 Tampa, USA, FL, Florida Gender:	Re: First year follow up at boston Reply #1 - Aug 8^th, 2012 at 8:22am Hi Amit, My understanding is that a CT Scan doesn't show as much as an MRI. My daughter had a Cerebral Angio done for her one year check. After that she has had CT Angiograms. Is it possible the San Diego Doctor wants to do that instead of a CT Scan? If not...my gut would be go with Dr. Scott. Just my opinion.
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Erinmom2

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Mom to Malachi Moyamoya
surgery on June 28th
2010.

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Illinois

Re: First year follow up at boston
Reply #2 - Aug 9^th, 2012 at 11:10am

Our son also had his surgery done in Boston and after a year Dr. Scott asked us back for his 1 year Angio. It was a nice trip. We went for 5 days, which was more than enough time. Our Son had his angio done as an outpatient and then a day or 2 later we met with Dr. Scott in his office where he showed us the results. We were able to ask questions and he informed us of further instructions. It was a wonderful trip and awesome to again thank the man who saved our sons life!

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momkaren Experienced Poster Offline I Love MM.com! Posts: 126	Re: First year follow up at boston Reply #3 - Aug 11^th, 2012 at 10:38pm Hi Amit, We also had Christopher's 6 month MRI/MRA done here in Philadelphia. We just couldn't make it to Boston. The results were good and they were sent to Dr. Smith. The 1 yr angiogram will be done in Boston soon! Karen
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Amit

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Re: First year follow up at boston
Reply #4 - Apr 28^th, 2013 at 8:41pm

Hello Erinmom2,
Can you please describe in details the process for the MRI/ Angiogram?

We have our first yr followup coming up in 2 weeks and we are flying all the way from San Diego to Boston.. Very nervous..
Can someone list/ walk me through the entire process for the day of the MRI/ Angiogram.

Care to be taken before and after please..
Also any tips on a long flight for a toddler (about 20 months) will also help..
Thanks
Amit

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hrsridermom

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mother of 19 yr old daughter
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Re: First year follow up at boston
Reply #5 - Apr 29^th, 2013 at 1:35pm

I can't really help much with the angiogram prep. The doctor should go over that with you. As for traveling with a little one...take finger foods, cheerios, crackers etc. Also take something to suck on during takeoff and landing. this helps clear the ears whcih most little ones don't do by themselves. If they don't clear them they will have pressure when landing and it can't hurt. So...a bottle, pacifier, lollipop etc. I always packed crayons and color books for mine to play with too. Hope you have a good trip and gat good news with the angiogram.

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momkaren

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Re: First year follow up at boston
Reply #6 - Apr 30^th, 2013 at 10:49am

Hi Amit,

My husband took Christopher to Boston in October of last year for his angiogram and 1 yr check up (this was late in being done due to insurance problems). They took a train out very, very early in the morning (6 hr ride) and they were able to come home the same night. At the 1 yr checkup, the angiogram is the only test given usually. MRI/MRA is done at the 6 month point after surgery and again at 6 months after the angiogram (after the 1 yr). Christopher is due for his MRI/MRA soon, but Dr. Smith told us we can wait till the fall to have it done and we will be having this done where we live, in Philadelphia.

Christopher was not able to eat after midnight and only clear fluids up to 2 hrs prior to angiogram. The test took about 1 hr, he was sedated and a cathetar was placed in his groin (small incision). After the test, Christopher had to stay in bed and lay still for 6 hrs. Everything went great and they were able to come home. Dr. Smith talked to my husband after the angiogram, gave us copies of the angiogram results and they were amazing compared to before surgery. He had no problems with the incision site and has been doing fine since then.

Here is a link to the hospital's site which explains the testing.
http://www.childrenshospital.org/az/Site580/mainpageS580P1.html

As for the plane ride, if you have one, bring a portable dvd player or small toys for him to play with. Best of luck to you all, everything should go just fine.

Karen

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azhurds

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Re: First year follow up at boston
Reply #7 - May 1^st, 2013 at 11:49am

Listen to Dr. Scott. A CT scan will not show the blood flow of the brain. Moyamoya is all about blood flow, your son needs the MRI/MRA. To understand are they doing a MRI or a Cerebral Angiogram? Those are two different procedures. If the Cerebral Angiogram is order then you won't need a MRI/MRA. For the procedure since your son is so young, he will be put under general anesthesia. After the procedure he will start a light diet to make sure his tummy is not upset. My daughter is a champ after her MRI's and you would think nothing never happened to her.

My suggestion is call Dr. Scott's office and ask to have someone call you because you have questions regarding the procedure and what will be done. Also I'm sure Dr. Scott would like to see your son. The test will be done, he will get the results and not have to wait a few day. I'm assuming you can also view the results with Dr. Scott If there are any questions and that way as a parent you can see how everything looks. Plus that will give you a chance to ask questions to the doctor in person.

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Amit

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Re: First year follow up at boston
Reply #8 - May 2^nd, 2013 at 7:56am

Thanks azhurds.
I thought Cerebral Angiogram is the same as MRA (MR Angiogram) .

http://www.chw.org/display/PPF/DocID/21976/router.asp

I know MRI is different than the angiogram..
We are clubbing his MRI with the angiogram because our son had post surgery complications and hence had to be administered a MRI at 3 months post surgery..

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azhurds

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Re: First year follow up at boston
Reply #9 - May 2^nd, 2013 at 11:45pm

Hi Amit,

So much medical jargon. I think we need a page that is devoted to different medical terms. You could be right. I always thought a MRI/MRA was a similar test but the MRA was done with a dye that was administered through a IV. I thought a Angiogram was done through a major artery like in the groin area. I just remember my daughter having a Angiogram about 3 months after her stroke and that is how it was performed. I also remember having to keep her still in the recovery area for about 4 hours so that everything would clot and there were no other issues.

I hope you are able to get your questions answered. Good luck to your son and hope he has a positive outcome. These follow up appointment are so nerve racking. Please keep the group updated with how the appointment goes.

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Amit Junior Poster Offline I Love MM.com! Posts: 50	Re: First year follow up at boston Reply #10 - May 20^th, 2013 at 7:02pm Just back from Boston Children's.. Our Son's angiogram and MRI went well.. Thanks for your prayers everyone! Amit
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