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21widmoya

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wether or not to get operation for moya moya?
Jun 25^th, 2009 at 8:00am

hi i am 21 and dave birth to a baby boy 3months ago thats when i fpound out i had moya moya!the doctors keep putting opf the opperation because i have baby at home! abd im not sure if it will make a difference or not!i have had this since i was 9 but didnt get diognosed till now! and have just started being really tired, slow breats, really bad migrains all day today with my eyes blacking out 4 times slowly coming bak bnut blury! plz help i don't know what to do?

thanks for taking the time to read i am from australia and don't know much about =this at all!

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Little Luca

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Re: wether or not to get operation for moya moya?
Reply #1 - Jun 25^th, 2009 at 9:44am

Hi 21widmoya

Congratulations on the birth of your son and welcome to moyamoya.com.

Moyamoya is a progressive disease, meaning it gets worse with time. Yes, you've had it since you were 9(?), but I'm quite sure it's gotten worse from what you've described and if it's left alone, could end with you having a stroke.

If the diagnosis is moyamoya, you need surgery.

It's difficult planning anything when you've got a little nipper, but you also want to ensure that you stay healthy and strong for as long as possible for the sake of your baby, and moyamoya can be corrected with surgery.

So, the question is: how long do you wait to have surgery? My short answer is: as soon as possible; especially considering your new symptoms.

I'd like to know how your doctor pinpointed the age at which you contracted this disease. We always suggest to newcomers to seek the advise of an experienced moyamoya doctor. If possible, get the images of your brain on CD which led the doctors to your moyamoya diagnosis, and send them to a moyamoya expert. There is a list of them under the heading 'Surgeons with Bypass Experience'. Dr Steinberg at Stanford University is highly respected in this neck of the woods and it costs nothing to get his, or any of the other doctors, opinions. OK, the courier from Australia to USA will cost a bit.

For now, the best advise is on this post:

http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1244078824

Also, steer clear of stimulants like caffeine if your feeling tired, they make the blockages in your arteries worse.

Dealing with a very young baby is stressful enough, so your hubby really has to do his bit to ease the pressure.

Good luck and keep us updated
Mark (Luca's Dad)

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« Last Edit: Jun 25^th, 2009 at 9:48am by Little Luca »

1st stroke in September 2008, age 10 months
Bi-lateral mm diagnosis
2nd stroke in November 2008, age 1 year old
Left side surgery in December 2008
13 years on now
Doing just great!

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Bev

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Re: wether or not to get operation for moya moya?
Reply #2 - Jun 25^th, 2009 at 10:03am

Hi I'm Bev

A fellow mother of a young child.

MoyaMoya can be scary. I was diagnosed in 1980. I have not had surgery as I have been told its too deep for surgery but I agree with Mark that contacting a MoyaMoya specialist is the way forward. I had a second bleed when I was pregnant with my son 7 years ago and know the pressures of a new born and the pressures of recovery from a MoyaMoya episode. I've been told that surgery is still not an option for me but if it is for you think of what you could be missing out on if you didn't have it and you suffered a potentially fatal stroke. I've always ben told to avoid aspirin or any medication that has blood thinning properires if this if helpful don't know about caffeine its not soomethig I've been told about. the surgery does have benefits but again discuss your circumstances with a MoyaMoya specialist not someone who looks at you blankly when you tell them that what you have.

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betty

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Re: the risk of not getting operated for moya moya?
Reply #3 - Jun 25^th, 2009 at 10:08am

Hey guys, i was diagnosed with moyamoya desease, however, i wasn't been through with surgery. I only taking oral medication as per my doctor's advised. I was hospitalized last august 9,2008, the reason i register with you is to know more about moyamoya desease without undergo through brain surgery. may i request if you could give me some information the risk if any, and the other things that i will do now in my life coz i was afraid because i have 2 daugthers of 17 and 14 yrs old. hoping to hear from you soon. thank you. :(

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« Last Edit: Jun 25^th, 2009 at 10:18am by betty »

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disneygirl

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Danville, Illinois
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Re: wether or not to get operation for moya moya?
Reply #4 - Jun 25^th, 2009 at 10:12am

Hello and welcome to the Moyamoya family,

We are always here to help and answer any questions that we can. Usually if one of us can not answer a question then we can direct you to the person or organization that can.
Mark gave you some great advise and he is correct.
The longer you wait for treatment the worse the disease can get. MM progresses at a different rate for everyone. A catastrophic stroke could leave you unable to hold or take care of that new baby. You need to consult a moyamoya specialist.
In the meantime, stay away from caffeine as Mark mentioned, but also drink lots and lots and lots of water, stay hydrated at all times and try to get as much rest as you can.
Let us know if there is anything else we can do.
As Mark mentioned, there are several MM experts listed on this web page and most of them will review your images and give you their advise at no cost to you.
There is a way to load your images from the tests that you had done on a web page that you would have to create and then the doctors could view them without you having to pay the fees. I am not sure how to do it but I know others that I have done that.

Take care and let us know if there is anything else we can do.

Tracie

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First stroke in 1974
Diagnosis in March 2009
Surgeries in April 2009

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21widmoya

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Re: wether or not to get operation for moya moya?
Reply #5 - Jun 28^th, 2009 at 9:31am

thanks to all who wrote back its good to talk to those who know what i mean....
re the aspirin thing i have been put on aspirin 1 daily! as my neuro surgen suggests! and do drink lots water now!
i am getting in contact with my dr as for the op i want to see if i can see a dr that know about the op more quikly than six months as that is when i have to see my neuro..... i dont think he knows much about moyamoya either! thanks agaoin much love

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jlhall

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Re: wether or not to get operation for moya moya?
Reply #6 - Jun 28^th, 2009 at 11:14am

Hi,

It’s very important that you realize surgery is the ONLY treatment for MM to prevent the inevitable stroke/hemorrhage that comes with this disease. The symptoms you describe may be warnings that this disease has indeed progressed and that you’re in danger of a stroke. Another vital key to success is early detection and PROMP treatment BEFORE a life altering stroke or even death. I say this not to frighten you, but rather to educate you to the facts of this disease.

It's very important that your doctor has experience treating this rare disease, and that he knows from experience the best possible surgical approach for your particular case. If you feel your doctor is not experienced enough with MM, I urge you to seek another opinion ASAP, one with MM experience. You’ll learn from reading the many posts here, that anyone who has had success in treating MM, has many times had to fight to get it. You must be aggressive in this.

You didn’t mention what part of Australia you’re from, so I don’t know if this will be of any help or not, but hopefully it will. We’ve had a few members here who went to an experienced MM neurosurgeon, Prof. Marcus Stoodley, in Sydney, and they spoke very highly of him and have had successful MM surgeries. You can always get copies of your films/records, and contact him immediately for his opinion.

The info is:
Prof Marcus Stoodley, Sydney Australia
193 Macquarie St
Sydney NSW 2000, Australia
(02) 9223 6500‎

Here is a link to what others have posted about him:
http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1181213093

You’ll certainly be in my thoughts and prayers.

Mar

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21widmoya New Poster Offline I Love MM.com! Posts: 11 AUSTRALIA Gender:	Re: wether or not to get operation for moya moya? Reply #7 - Jul 4^th, 2009 at 6:03am yes i have an appointment with dr stoodly, in 3 weeks to discuss what exactly i need to do and how bad it is! thank you so much ... will let you know how i go thanks again!
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Little Luca Senior Poster Offline Whatever it takes Posts: 346 Somerset West, South Africa Gender:	Re: wether or not to get operation for moya moya? Reply #8 - Jul 6^th, 2009 at 5:28am Good luck, I'm glad you're seeing someone with moyamoya experience. Look after that little boy. Mark (Luca's Dad)
Back to top	1st stroke in September 2008, age 10 months Bi-lateral mm diagnosis 2nd stroke in November 2008, age 1 year old Left side surgery in December 2008 13 years on now Doing just great! IP Logged

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betty

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Re: wether or not to get operation for moya moya?
Reply #9 - Jul 14^th, 2009 at 10:49pm

Hi 21Midmoya,

Congrats to you new baby. Well me too I had not been operated or went throug surgery coz like others I'm afraid on the consequences, right now I'm just enjoying my life, not be stressful, not getting and relax. Still taking my oram medication actually, I recently went through my check-up and my doctor add me another oral medicine, by giving "sibillium" coz I'm complaining my head. I feel sometimes "head muscle spasm" and like my head is "shrinking."

Anyway, with prayers God will help us to live longer in this world.
Again, hope to hear from you soon.

regards,
betty :)

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21widmoya

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Re: wether or not to get operation for moya moya?
Reply #10 - Sep 30^th, 2009 at 7:19am

thank you all for your support i have an appointment on 13th oct for an angiogram then see the dr on the 16th to find out if i need 1 or both sides operated on........
i will Undecided

need the operation and am just waiting on the dates to be set and to have the money raised...........
thanks again for all the support..........

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jlhall

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21widmoya New Poster Offline I Love MM.com! Posts: 11 AUSTRALIA Gender:	Re: wether or not to get operation for moya moya? Reply #11 - Oct 19^th, 2009 at 3:49am i have to have 2 sergeries! 1 in 4 weeks and another in6 months thanks all for the info and support..... ill be intouch when i recover from the first 1 thanks again jamie-lee
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Little Luca Senior Poster Offline Whatever it takes Posts: 346 Somerset West, South Africa Gender:	Re: wether or not to get operation for moya moya? Reply #12 - Oct 19^th, 2009 at 8:01am Hey Jamie-Lee Best of luck and keep us posted. Mark (Luca's Dad)
Back to top	« Last Edit: Oct 19^th, 2009 at 8:02am by Little Luca » 1st stroke in September 2008, age 10 months Bi-lateral mm diagnosis 2nd stroke in November 2008, age 1 year old Left side surgery in December 2008 13 years on now Doing just great! IP Logged

Skay5709 Junior Poster Offline I Love MM.com! Posts: 60	Re: wether or not to get operation for moya moya? Reply #13 - Oct 19^th, 2009 at 10:57pm Hi, Just want to let you know that you and your family are in my prayers. Just know that you made the right decision to have the surgery. I had mine in 2003 and am thankful I had it. It has given me six years. Take care and godbless Sharon
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yunnanababy Experienced Poster Offline My daughter had her surgeries in October 2009 Posts: 137 Indianapolis, IN USA Gender:	Re: wether or not to get operation for moya moya? Reply #14 - Oct 21^st, 2009 at 3:36am Jamie-Lee, You & your family will be in my prayers as you await your surgeries. I'll look forward to reading an update from you after your first surgery. Best wishes, Jennifer
Back to top	Mom to an 9.5 y/o ballerina/guitar player with MMD & an 11.5 y/o gymnast/cross country runner/swimmer! www.caringbridge.org/visit/rubymaejingli IP Logged

Briellesmum

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Re: wether or not to get operation for moya moya?
Reply #15 - Oct 22^nd, 2009 at 6:03pm

Jamie - Lee is Prof Stoodley doing the surgery??
We are in Canberra but are coming to Randwick kids for Brielles surgery (she is only 4).
We are still waiting for a date but she just had her 4th stroke so I am hoping that bumps us up on the list a little.
I would love to meet up with you when we get to Sydney.
my email is foxcm01@yahoo.com.au

I hope your first surgery goes well

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Mar

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Re: wether or not to get operation for moya moya?
Reply #16 - Oct 22^nd, 2009 at 8:53pm

Briellesmum,

Incase jamie-lee doesn’t visit the site to read your post before her surgery, you could click on her user name, and it will take you to her profile where you can “click to send her an e-mail.” Perhaps you’ll get a hold of her before her surgeries, so hopefully you’ll get to meet up.

Just a suggestion. Please give a big hug to Briell and know she’s in our prayers.

Mar

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