Hi Dewski...
...welcome to this site and we're here to answer any questions (big, small, easy, difficult) the best we can as we all been through many variation paths.

As far as "determining which surgery is the best"...varies greatly.  In my daughter's case...her dr review the angiogram in depth...and told us some surgical methods they may do but will decide upon opening her up.   They felt they would do the muscle graft (indirect) regardless and will "try the STA-MCA bypass"..as it could be "very very small" and may not succeed but that would be immediate blood flow..worth the try......so he had the proper surgical team on hand, discussed what he wanted to do.....so that when they opened Cara up...and actually "see" what's there...they decide right then to do a "certain" type.  Both surgeries on both sides were done five weeks apart (right first...then left second).   

Removing the bone is replaced right back when surgery is done...in Cara's case..it was a small piece. 

We were told that the muscle graft...still connected to her scalp so the arteries are intact was put into the skull attached on the brain...and eventually new arteries will sprout from that little patch....may leave a "bump" on the side of her head........but her thick hair would cover.....as she grows it'll blend in with her head.

Her right side bump is slightly larger than the left side...I was worried if she fell on that bump ...damage would be done....but its just muscle nothing would happen should she get hit there.   The burr holes are tiny too (Cara didn't have that) but others can reply to your question.

Right side meaning the surgery was done on the right side of the brain which affects all your left side motor actions.   Left side meaning surgery done on the left side of the brain that affects all your right side motor activities

Cara had a stroke right after her right side surgery (1st surgery) on her left side...so she affected all her right side motor skills (arm, hand, facial, leg...etc..including her bubbling personality)...she had continous occupational (0T) and physical (PT) therapies in the five week period before the second surgery...regained a lot back but wasn't until she came out of the second surgery she got her personality back which meant in her case the additional blood flow she got back helped.

The future outlook is great for her..as it is for all those who have the surgeries...everyone does vary greatly.

I'm not familiar with those who have the surgeries on both sides at the same time but they are under aesthesica longer....varies from case to case but you'll know ahead of time if only one side will be done or both sides at the same time.

While Cara still has tiny seizures/TIA's...she has gotten SO much better....I don't think she would even be alive today had we not done the surgeries.  It's been a year...she's grown few inches and is stronger...doing great but still has more recovering too.

Her doctor told us it takes one person who had "one" stroke 18 months to reach their maximum potenial...and Cara has had several strokes...to give her time as she grows.  She's still little uncoordinated when throwing a ball or when running.  One person commented on Cara's throwing a ball to the dunk cage last week..."whats wrong with that little girl ?"  He was a friend so I hit him back saying you'd be the same way if you had some strokes and two brain surgeries but I am thankful she is alive, happy, laughing and still with us.

keep asking questions, keep researching....took me awhile to get as much information as I could...while this is a rare disorder, still not much statastic information to follow yet...but one of these days...we will have it...until then...we have each other...to continue to pray that things will only get better.

hugs,  CarasMOM

What an excellent reply!!!  Thank you so much!!!

I'm still getting a feel for the message boards too, so this might take a bit of trial and error.     I'll get the hang of things eventually...

CarasMOM wrote on Jul 20^th, 2005 at 2:18pm:


I'm sorry to hear that your little girl has had to go through so much.  Her picture is cute.  My wife and I are going to update Michael's picture in the very near future, with something a bit more square.  LOL  The message board's kinda sqish the picture a bit.

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An angiogram is a test that Michael has not had yet.  I imagine that it is somewhat invasive, so perhaps that is something that Dr. Scott would want to do in Boston as opposed to us having it done here in Syracuse, NY.  I am sure he will let us know when he calls.

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I am not ashamed to say that I find that a bit unnerving.  I am sure that there are always decisions that need to be made at the moment of surgery.  I guess it's the "unknowing" that makes me uneasy, but in reality, no matter what type of surgery Michael will have to undergo, it will be difficult to see him go through it.

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In Michael's case, he has other things that will no doubt fall into play.  He has a lhigh-pressure vp shunt in his head for his hydrocephalus.  I guess we aren't as worried about a bump here and there.  LOL  He is just a "bumpy-headed-kinda-guy".  We were much more concerned about him having a piece of his skull permanently removed and having live brain tissue "open" for the slightest bump to jar.  It seems to be that leaving the bone fragment out is much rarer than we initially thought.

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Isn't that a wonderful thing!  WTG Cara!   ;  Michael all ready has many problems with his right side.  He had a stroke in-utero and another at a very early age.  I'm not even sure if it was ever determined if he was right or left-handed, although he is left-handed now by default more or less.  His partial paralysis goes all the way down his right side, including some in his face.

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From the little that I have been able to put together, Dr. Scott's website seemed to dictate that distance might be a factor as well, in determining whether or not two surgeries can/will be done at the same time.  We are approx. a five-six hour drive, (flying low)  , from Boston and I don't believe that flying is an option with Michael's shunt.  I guess time will tell in all of this...

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Wow...  Now, although that is something that we don't actually envision, the miracle of actually growing more would be amazing.  Michael, at 17, has a height and posture of about a 6-7 year old.  He is a very short (but adorable) little man.  He is about the same in his mental stature.

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And we are both OH SO THANKFUL for this message board!

Take care,

-= Dewski =-

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We are finding this to be VERY true.      Thank you for the warm welcome.

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I am not what I would consider a very good poster.  And my wife is probably even worse.  LOL  But we have spent a great portion of the last week simply reading (and re-reading) many of the messages on moyamoya.com.  This is indeed a rare disorder and it is SO valuable to have ppl to discuss different issues with and to know that there is someone - somewhere - who understands where we are coming from and who can relate to the different problems we face as they arise.  (How's that for a run on sentence?  HAHAHA)

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One of the first things that Michael's new neuro-surgeon said to us, was that while he reccomends the surgery and would perform the surgery if we requested him to do so, he highly reccomended Dr. Scott if we had the option(s) to do so.  Our surgeon has only done the surgery a few times.

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There are so many puzzles to Michael.  (My nickname for him is "The Mystery Man".  He likes it.     ) Like I mentioned in a post to another person earlier, Michael is 17 years old but has a physical (as well as mental) build of a six or seven year old.  I can only imagine that what arteries that he does have in his brain are small as well?!?!?

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DJ seems like quite a remarkable person.  He took the battle by the horns and didn't bow down to it.  Kudos!

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I guess part of the question was a hope that perhaps some of the damage that has been done over the years might be able to be helped?  He has had PT, OT, he even has an AVI in school for his vision, but there really doesn't appear to be alot in the way of recovery in these areas.  I was curious if the return of blood flow to parts of the brain in certain individuals have resulted in reclaiming some of the neurological losses that moyamoya patients face...

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I will never consider a lengthy post as "rambling"...  Hehehe  Sometimes, it's the only way to explain such a complex and frustrating disease.

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We'll "dew" and thank you,

-= Dewski =-

Dewski wrote on Jul 20^th, 2005 at 8:16pm:


Dewski -

I was 28 when I had my surgeries with Dr. Scott (30 now).  I also live about 5 hours away from his office (in the Philadelphia area).  Dr. Scott did my surgeries a week apart.  Therefore I was in Boston for about two weeks....I was in the hospital the entire time and my Mom stayed in the hotel right next door (my Dad flew back and forth between Philly and Boston as he had to work).  Anyway, we flew throught most of the pre- and post-surgery appointments but opted to drive for the actual surgery due to timing - It's difficult to plan a flight schedule when you don't know how long you're going to be in the hospital. 

Anyway, from what I've heard from other people on the board, Dr. Scott usually does MM surgeries a week apart.  But I want to stress that everyone's experiences are different.  Especially, from reading your posts, that Michael has other medical issues that he, and your wife and you, are dealing with.

But Dr. Scott is wonderful and you are in very good hands!  The hospital is wonderful too!  It's very comforting when you are there - when you mention moyamoya and everyone knows what you are talking about! 

Again, good luck, and keep us posted on Michael's progress.

-Shari

kotipup wrote on Jul 22^nd, 2005 at 1:17pm:

Thank you.  I was wondering if I may have worded my post a little odd, but I am glad that you caught it!   ;  You hit it right on the head.  I know that Michael obviously suffered damage from the two strokes, aut I have often wondered if some of his speech pattern problems might be from the moyamoya and not necessarily *all* from the strokes. 

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That is awesome!  That would be so wonderful if Michael could see some results there.  He is a 9th grader, actually going into 10th, and all the other kids tower over him...

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Guaranteed to be my next stop. 

Thanx for the post,

-= Dewski =-

kotipup wrote on Jul 22^nd, 2005 at 1:17pm:

I spent about an hour and a half there last night and will no doubt go back again at some point today.  My God, but she has been through so much in her short time.  God bless her, and her parents too!  It takes an incredible amount of strength and faith to endure what you have so far.

I just had to stop back and give you and your husband kudos for all that you have done and continue to "dew" during her incredible journey.

God bless you and yours,

-= Dewski =-

Dewski wrote on Jul 22^nd, 2005 at 10:57pm:


Things are wonderful, thank you!  It's actually been a year and a half - haven't reached that 2 year mark yet.  But I've definitely gained a new appreciation of life!  I don't sweat the small stuff anymore - I don't worry about the little things that, in the grand-scheme of things, don't really matter that much!

As for the prevalence an adults - yep!  When I was first diagnosed and I was researching MM I read that diagnosis usually occurs in the first and third decades of life (0-10, 20-30).  I say usually - of course there are always exceptions.  Have you notice the poll on the front page of the message board?

Dewski wrote on Jul 22^nd, 2005 at 10:57pm:


One of our goals on this website is to spread awareness of and about Moyamoya.  If you haven't done so, check out the Online Store!  I wear my blue MM band daily and I get lots of questions about what MM is.  Spread the word!!!

-Shari

Shan wrote on Jul 25^th, 2005 at 1:02am:

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Prayer from Hawaii - we feel blessed all ready!  ;

Things are pretty much at a stand still until Monday or Tuesday.  Dr. Scott is currently on (what sounds like a MUCH deserved) vacation.  He returns back to work on Monday, August 8th.

We have sent Dr. Scott all of Michael's latest MRI, MRA, and shunt series, along with all the reports, for him to review.  (Hopefully, he will get a nice stiff cup of coffee first.)   

Then, we wait for his phone call.    

To say that we are nervous would be a drastic understatement, but we are thinking positive and need to focus on the fact that there are "others" that know so much more than us when it comes to Michael's disease and what is in his best interest. 

It can be difficult to come to terms with knowing that sometimes we have to put our trust in others to care for our needs.  It makes it even more difficult when it is for our child's needs.

From all that I have found to be true about Dr. Scott, I know that Michael's medical needs will be in the best of hands.   8)

-= Dewski =-

Aloha Dewski,

Waiting is always hard...As a matter of fact, I am currently waiting for one of my doctors (not related to my MM situation) to return my call regarding recent blood test results, but it looks like I'll just have to wait until Monday too.    Some people say they think the worse so that they are better prepared to hear the results; however, like Cara's mom stated, I belive a "positive attitude" is best....(I know, easier said than done...)  Stay strong....and try your best to redirect your focus on other things....(again, easier said than done).   In fact, I just signed up for a "Yoga and Anxiety" class being offered by one of our hospitals here in town to learn relaxation and breathing techniques to prevent/control anxiety.  The upcoming class is currently full, so I'm waiting for the next one...so please know that as much as I'm telling you to relax and re-focus, I know that I too need to work on what I preach.    

Regarding Dr. Scott, I personally don't know him, but from what I've read about him, he is an amazing man that is no stranger to MM.  

Just know that you, Michael and your family are in our thoughts and prayers...yes, even from aaaalllll the waaaaaay across the Pacific Ocean.  ;

Take care and let us know how things go...

We're here for ya'

Take care,
Shan

Hi Dewski,

As each patient is different, the best person to direct that question is Dr. Scott.  Most patients do end up continuing with aspirin therapy.  My daughter is on a daily adult aspirin indefinitely.  I can't speak to the Kepra, but would imagine that it would depend on Michael's seizure activity.

I'm glad to hear that surgery is scheduled!  It's far better to be making plans than to feel like you're doing nothing.  You, your wife and Michael will be in our prayers.

Hugs from out west,
Jill