Hi Cheryl,

The EDAS is a bypass surgery but an indirect bypass as opposed to a direct bypass (STA-MCA) that is often mentioned here.  People here on this board have probably experienced equal amounts of each surgery (I'm guessing as there has never been an official poll of that number). Take a look at this recent discussion titled "Choosing the right type of surgery".  This should help you quite a bit.  

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

Also, if you haven't already, take a look at this link which can be found under Medical Info (MoyaMoya surgery) up at the top of the page.  It's a small synopsis of the different surgeries.

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

Please ask away with any further questions as I know that it can all be a little overwhelming at times.  Good luck at your doctor visit next week and keep us posted.

Lisa

I am not sure when the surgery will actually happen.  I will meet with the Dr. next wednesday.  Thanks for the info. I will keep you all posted.

By the way...

Drawings and pictures of the STA-MCA procedure can be found at:

http://www.moyamoya.com/journals/sta-mca.html#FIG8

Thank you DJ and to all of you.  Very informative I now know the difference between the EDAS and the STAC Mac.  thanks once again, i will keep you all informed.

Hello Moyamom

Welcome to the site!Hope can answer your questions.
Most common for children is EDAS and EMS.
Most common for adults is STA-MCA direct bypass.

If look at the top of the page,you see the links page!
Their are two very experienced MoyaMoya Doctors that you can contact and also (ie) send films to for second opinoin!
It is better to get this treated as soon as possible.!

Wecome to MM.com
More people will respond quickly
Kevin

Dear moyamom,

Welcome to our family!  I am sorry about your son's diagnosis, but very glad you've found your way here!  This is a great place to learn about MM, and there are some wonderful people here, all who have traveled this road in one way or another.

I am the mom of an 18 year old girl who was diagnosed and had two bypass surgeries in May 2004.  We consider ourselves very fortunate that our daughter had "only" had two small strokes prior to surgical treatment.

The best thing you can do for your son is to read up and educate yourself about this disease.  As you become more familiar, you will understand that this is not a "wait and see" disease.  It is progressive, and ideally surgical treatment is obtained PRIOR to a devastating stroke or hemorrhage.

I don't know your son's history, and I am not a medical professional.  However, to hear a physician say that symptoms don't warrant surgery is something I don't understand at all.  Is the blood flow to your son's brain less than it should be?  Symptoms or not, if that is the case, he should be proceeding with treatment, BEFORE something terrible happens. 

Unfortunately, the majority of the medical profession is just not well educated about MM.  The wait and see stance seems to be fairly common.  The question you have to ask is, what are they waiting for?  This is a progressive disease that won't get better or improve with medicinal treatment.  The true experts, doctors who see it on a DAILY basis, are few and far between.  The leading specialists are located at Stanford (Dr. Gary Steinberg) and Boston Children's (Dr. Michael Scott).  Dr. Steinberg operates on both children and adults, and Dr. Scott primarily sees pediatric patients.  Both are happy to offer an opinion free of charge.  You might want to seriously consider sending your son's test results to one of them for a recommendation.

In the meantime, some key questions to ask your son's current doctor:  How many MM patients has he/she seen?  How many MM surgeries  has he/she performed?  How did he/she conclude that the EMS surgery was the best for your son? 

I don't want to frighten you, but as a mom, I'm sure you don't want someone who just dabbles with this disease to treat your son.  With the lack of MM knowledge amongst the medical profession, it is not unusual for people to have to travel away from home to seek good medical care.  I've met many people from out-of-state and out of the country who have come here (California) for treatment by Dr. Steinberg at Stanford.  It is commonplace there - they've performed several hundred surgeries (amazing when you consider that MM occurs in 1 in every 2,000,000 people!).

Good luck to you as you start the education process.  You and your son will be added to my prayers.  Please don't hesitate to continue asking questions, and I hope you can decide on a plan of action that seems to best suit your son.

Warmly,
Jill

Jill, Michelle and Kevin,
My son is 28 and had a stroke on July 23rd of this year.  He did not have any lasting symptoms.  That started a barrage of tests which led to a neuro in Ft. Walton, FL.   The surgeon, suspected MM, because he was stationed in Japan and saw it alot, but is not qualified, by his own admittance, to treat it.  He sent us to UA Birmingham Medical Center where he saw a Neurosurgeon who did an angiogram and diagnosed MM.  My son just went back this week for a special MRI that measures blood flow.  His bloodflow is normal, and the veins his body has made to make up for the 100% blocked ones are very strong in the NS's opinion.  So he is saying wait until symptoms get worse, even though he has never done an MM surgery.  Needless to say we are seeking 2nd and 3rd opinions and fast!!  We have DVD's of angiogram, CTA, and recent MRI.  I read that Dr. Steinberg in LA will look at them at no charge and give a determination.  Dr. Lewis at UFL Gainesville, FL will look at written reports of the tests at no charge.  That is where we are at this point.  Any tips, info or suggestions are greatly appreciated!! Sorry, Jill for the repeat, I sent this to you privately.
Marguerite

MoyaMom wrote on Nov 18^th, 2005 at 5:27pm:


Hi Marguerite -

I have to tell you that this statement made me very uneasy.  The veins that are produced - collaterals - are anything but strong and they do not provide enough blood flow to supplement the narrowing arteries.  The problem is that they are thin and weak.  This means that there is risk for those vessels to break and cause hemorage.

I don't mean to freighten you - and I think you are doing the right thing by getting multiple opinions!  Dr. Scott, who I went to, is easily accesable as well.  He is a pediatric neurosurgeon in Boston - but he sees adults up to age 35.  He did my surgeries 2 years ago.

Keep up the good work in seeking a better opinion!

-Shari

Hi all,

Seeing that Dr Marshall is recommending that I have EDAS surgery on my left side, I thought that I would re-read this wonderful post. From what I have read on hear (TomG correct me if I am wrong), at least those treated at Columbia Pres, will have two burr holes remaining after surgery. So my question, how safe is it to walk around in life with two quarter sizes holes in the skull? Call me a klutz, but I know that I have banged my head pretty hard a bunch of times in life.....and seeing that I do ride a motorcycle, I guess I should never take off my helmet....

For those who have had the EDAs, have you had any issues with having burr holes.

Thanks,
Greg

Shari....

Congratulations on the two year aniversary.

Thank you for the feed back as well. Now that I've been officially diagnoised and now waiting for my appointment with the Dr. C. at Columbia, I'm trying to learn as much as possible about the EDAS surgery, and the events shortly after surgery in attempt to ask better questions at my appointment. I'm hoping to spend a bit of time with you and Tom next weekend to gain some better insight, seeing that you both are among the few people that have had the EDAS on the site.

Looking forward to next weekend,
Greg

Hi Laura -

Well, I had about 20 stiches on each side...but not to worry, your hair will completely cover it!  They only shave what they need - about the width of 2 fingers (I have small fingers!)  and you will be able to hide it well.

The picture over here <---- was taken about a month after my second surgery.

-Shari

Hi My name is Leigh Ann. I am 32 years old and was just diagnosed with Moya Moya in August of 2010. I am not Japenese. No one in my family has this. I just had the EDAMS surgery September 27,2010. My vessels were too constricted for the other surgery. I had 5 mini strokes and was having seizures or "Spells" like seizures prior to. But the way I was diagnosed was because I had a headache that would not go away. I am re-cooperating from my surgery still. It is a hard thing to go through, but I was up and moving after one week. I wanted to go n still want to go. I have a hard time accepting what I have, but thats why I am looking for support. Ask the doctor lots of questions. My surgeon said they do this operation 30 times per year only because its a rare disease. So far, I've had no spells or strokes since the surgery. Im awaiting my first follow up appointment in another week to get my stitches removed. If I can be of any help let me know.