This is a question for anyone who may know about this subject.  I read on this forum as well as from a pre/opp intern that the direct bypass last only ten years and may have to be done again.  I have no Idea if this true or not and would like help from any of you to find out.  

Thanks

Wayne

Wayne,

I was thinking the same thing but not for the direct but for the indirect...not much about the "long term results" but was planning on researching that because everyone keeps asking...is it all over for Cara..is it all fixed.   I keep thinking....since this MM is progressive...I wonder if there is such thing as "cured"...something that has to be "watched" anyway I know that (and planning on doing that)...but reading your post I'm wondering...since this website isn't that old ...am hoping it will attract people who have lived with MM a long time, how they are doing after surgery...years from now.   I know the kid in the video is now a 16 year old boy with a normal life...but wonder what are the expectations for this.   I'll keep researching and post anything I find out...vice versa...

thanks,  carasMOM

Wayne & Carol,

I've talked to Dr. Steinberg about this one personally... the statement that the direct bypass (STA-MCA) will have to be re-done in 10 years is absolutely, positively, 100% INCORRECT!

Now, does that mean someone may need the STA-MCA re-done 10 years down the road?  Yes.  Does it mean someone who has the EDAS surgery may need it re-done 10 years down the road?  Yes.  Does it mean someone who has shoulder surgery may need it re-done 10 years down the road?  Yes.

My point is, the STA-MCA is not a surgery that is intended to be performed more than once, nor is the EDAS type surgery.  If they are done correctly the first time, they should last a lifetime!  Hense, the reason to seek out a specialist for treatment, not just find a surgeon who can do the surgery.

I know I'm betting on my surgeries lasting a helluva lot more than 10 years and I would bet that anyone else who's had the same surgery is planning on the same thing.

Wayne, I don't know how much experience your pre-op intern had with Moyamoya and the STA-MCA surgery, but my opinion is he doesn't know what the hell he's talking about!  I could point you to hundreds of interns from Stanford who would tell you exactly the opposite thing.

Anyway, my  [smiley=twocents.gif]

-DJ

Right said Fred!

Thanks DJ,

That is what I was looking for (This is a pre/op for all surgeries way accross campus).  The intern might be comparing MCA to a heart bypass.  But that raises the issue that I believe you where trying to say about MM specialist and a surgeon.  Those who have just a surgeon might just be fine with the bypass, but as humans we need more then that.  We need follow up, with many questions that we can get answers from.  Some surgeons have the tendency to do the surgery and move on.  My surgeon in all fairness is a good one, but that is where it ends.  If I ask any questions about MM, he will answer it.  The problem is, I have only one follow up with him after surgery and if I do not ask the question (being new at this, I do not know what to ask) then that is it.  In all fairness to my surgeon, I have not asked all the questions that I should.  This is from the lack of experience and the persistent need to get it done for the life of my wife.  I did ask the questions that are posted in this site in regards to what to ask about the surgery.  I can see now that it was not enough.  It was not enough because of lack of information on this site, but rather not having a MM specific specialist.  A specialist will be more forth coming with information that you will not know to ask.  Again I can not say that my surgeon is bad, I just did not ask.  Questions that I did ask he answered with no problem and I should of asked him about the bypass in more detail, but he did mention that this is permanent in not so many words.  This is my fault for not asking him directly, because he knows.  I think that my doctor is good, but I do not know if there is any follow up beside the last post op.  I do want to say this, I have never spoken to Dr. Steinberg, but his staff was so forth coming and answered any question I had.  I felt good after speaking to them and was ready to go.  Our current surgeon’s staff was mean and told me to find other arrangements regardless of the urgency.  It was not until I asked for my test results and paperwork to send to Dr. Steinberg, before I got an appointment.  This is not the personality of the surgeon, but of the gate keepers that work in his staff.  The surgeon does not know we exist until the gate keeper put our file on his desk.  It is important for me to emphasize that, our surgeon is very nice and caring once he received our case.  You would not believe the demand of people there to see him.  It is just crazy.  Once we got an appointment, the staff became very nice, but it goes to show the difference between some offices.  When the surgeon reviewed our case he brought us in immediately.  I guess I am just rambling on now.  Now my question is where we should go after the surgery is all done for follow up and questions.

Thank you all, I would not know where I would be without you all.

Wayne

In my opinion for the follow up and questions you should go to the surgeon thats preforming the surgery. Maybe you need to seek out a new one it just doesn't sound right that you will not be able to follow up with him. A MM specialist will do the surgery, follow up and answer questions you have for a life time with just a phone call, to me this is disturbing.
                        Nancy

My understanding is the same as that of DJ's.  In our discussions with Dr. Steinberg, he clearly stated that Tara's direct bypass surgeries (one on each side) should "be it".  Would like to think that we won't ever have to do them again!!!

Jill

Hi,  :)

I really can relate to several problems beeing discussed on this subject.
When Louise was diagnosed this site did not exist and as DJ pointed out several times the information on the Internet was hard to find and for me hard to understand and value. But I did find Dr Scott and he answered me! :-* Louises surgeon never before had to treat MM or even less perform surgery on a 6 -year-old patient. ( There are TEN known cases of MM in children in Sweden ever; so how could any Swedish doctor be a specialist??) I tried to raise the money to be able to go to BCH with my daughter but since "they" had the opinion that the disease was treatable in Sweden they wouldnt pay for the surgery abroad and the trip and I for sure didnt have that money. Besides that the surgeon convinced me it was a simple surgery and everything was going to be fine. So what could I do??  [smiley=huh.gif]
I let them treat my daughter and prayed to every God and every Power in the Universe I was doing the right thing!
To make a long story short everything went fine and almost two years later she is living a good life as a normal Swedish  8-year-old girl so full of life, anger, happiness, love and all you can think of. :-*
BUT I still have  doubts in my mind that I did the right thing. :-/
Louises surgeon said that perhaps she would have to have one or more surgeries done in the future in order to keep her symtoms down. Is it because it wasnt done by a specialist the first time? Or is it because she has a progressive disease? ´
Wayne, you say your doctor knows the answers to your questions, but you didn´t ask them. Well, I did ask many questions but didn´t get answers, because there´s just not enough knowledge here. I adore Louise´s surgeon; he is my HERO :-*, but he doesn´t have answers for me about my daughters future and it´s so frustrating :( :'(
And I´m just not very good at living in a state of uncertainty :(
Thank you for listening, it just one of those days again.....

Take care and thank you so much for being there..

Annica

Hi, all

    In reference to this surgery issue, I'm concerned that maybe I'm not doing the right thing by letting just any vascular neuro-surgeon operate on me.  I haven't even met my surgeon yet.  I've spoken with him, and just about everyone else in his office, but am I really getting the special attention and all the information I need to know.  

    Dr.  Steinberg definitely appears to be the one to go with when it comes to MM.  But, how do I get it done?  Distance and finances just makes it seem impossible.  I've thought about trying to get my films to him just to see what happens, but then I realize even if he says 'come see me'.  HOW DO I GET THERE?   [smiley=worried.gif]  

    It isn't even worth trying to get a consult, because I know I'll never be able to get out there.  The time, money, and travel involved makes it illogical to even consider.  So, do I take my chances at maybe having to have surgery done again years from now?  Or, do I wait until I can afford to go to Stanford?  

    It's such a dilemma.  I mean, it's my life.  I deserve the best, but reality interferes with me getting to see the best.  These are just my ramblings on the topic.   :-[

Lee

Just checking my facts...and know others would benefit from this.

STA-MCA is a direct surgery and EDAS or EMS is an indirect surgery???  Right???

Where I read placing "unaffected" scalp artery on the brain.....does that "unaffected" mean it's not involved with MM meaning it won't progressively narrow over time?

I ask the above question because...when MM is described it is usually the carotid arteries that narrow...Is it just those arteries that "narrow"...and not any other arteries in your body....if the answer is YES...then that means the "progression won't affect" the new bypassed arteries....or there is just not enough studies out there "yet" to come to conclusion on that.

I'm gonna keep reading and will also email Dr. Meyer my questions and keep you posted.

Have a GREAT day,

CarasMOM

CarasMOM - my understanding is the same as yours: that it's the carotid arteries that tend to narrow/block and not the other arteries that are sometimes used to give the brain the extra supply of blood.  So when they do the STA-MCA procedure or, as with our daughter Emily, lay the STA onto the surface of the brain tissue so as to induce an additional supply of blood as a result of the brain's "instinct" to draw blood from the additional STA supply (ie. an "indirect" method), the STA is not expected to narrow/block.

This is only my personal understanding, from reading and asking our consultant questions, so I think you're absolutely right to get the qualified answer from your doctor but in the meantime I thought it was worth letting you know I thought the same.

AndyMac

Carotid artery is consisted of internal and external carotid arteries.

MM affects only the internal carotid artery around the supraclinoid portion (basal mid-portion of skull which entering into the cranial cavity). Therefore, the donor vessels of external carotid (STA;superficial temporal artery) never can be a victim of MM disease regardless the type of surgery including direct or indirect methods.

Direct bypass, if done correctly it goes permanently. Indirect bypass sugery, also usually it has no problem. However some patients could have difficulties to take blood from that, and additional indirect bypass can be done for the prevention of stroke.

Never mind about the narrowings/block of donor external carotid artery (mostly STA).

I found the article of Dr. Scott in Archives of Neurology, 2001. He described the good illustrations of direct bypass surgery there. If anyone needs this...I will send you via e-mail.

Thanks.

Jin-Il.

Hi, Jin-Il!

    It's good to hear from you again.  I really appreciate the time you have taken to share with us all of the information you have as a neuro-specialist.   Of course, after reading your post, I want to drop my doctor, and sell my soul to see an MM specialist.  
   
    Thanks again for sharing with us.   [smiley=hug.gif]

Lee

Hi Lee...

....you just described almost what the radiologist described of Cara's angiogram from two years ago...when I read all those words...different arteries...then I looked up in one of DJ's links...especially the one that he marked "excellent"..shows the different arteries...I think all those you described are part of the cartoid arteries anyway...and from Jin-Il's post sounds like other arteries outside of the cartoid network are not affected by MM.  So many names...I'm still learning...almost feel like I might as well become a doctor with all the medical problems my family has had over the years !!!!!  :-)

::) ::) ::) CarasMOM

Thank you so much Jin-Il!!!  [smiley=bow.gif]

I questioned my doctors about this subject and never received a satisfactory answer.  While I always understood that my surgery would provide me with instant better blood flow and that surgery was the ONLY way to go, I wondered if somewhere down the line the MoyaMoya would just destroy the new plumbing too.  That just seemed to make sense to me and no one ever told me that MM only affects the internal carotid artery-which doesn't surprise me as my doctors did not have a whole lot of experience with MM.  I did not realize that MM is particular in regards to which arteries to destroy.  That information is really a relief to me and answers that nagging question I've always harbored.

Along this same thread, I've read medical items along the way, and information from people on this board, that possibly artery failure in the heart and/or the kidneys (and who knows where else?) is possible or attributed to in those with MM.  What do you make of that?  Is it secondary possibly?  Or is there no research to warrant this?   Again, in my simple little mind, other arteries in the body affected too would make sense too but since your post I am doubting that indication.  
I look forward to reading what you have experienced with regards to this.

Thank you again!
Lisa