After reading a bunch of different topic on here, I was wondering if......when have you all contacted Dr. Steinberg for a second opinion....

Right now, I have the results (and slides) from my MRI and the report from a CT-Angio (CT with Tracer...and, I can get the films). Should I be talking to Dr. Steinberg now or after having the Angiogram.

Thoughts? Ideas?

Thanks a million,
Greg

Hi Greg,

I too was not Dr. Steinberg's patient, but my  is that I would recommend you sending whatever tests results available to him now, and then send the angiogram when that becomes available.  The sooner he is able to reivew your films, etc., I feel the better. Of course, this is my    .

Hope all goes well with your results and angiogram. 

Take care,
SHan

They will do an angiogram at Stanford, even if you send them films of another one.  I would recommend sending your films now, before you have an angiogram.  I would suggest you have as few angios as possible---they are terrible!
Stephanie

Hi Stephanie,

I was told that angiograms should be done only if necessary, like you mentioned...before surgery.  The risk factor I was given was 1 in 1,000.  Anyway, if he does have an angiogram in his hometown, and if he is able to see Dr. Steinberg right away, would he still need to do another one?  I guess if MM is progressive, and depending on what stage we're all at when we're diagnosed, then I understand that things may change if an angiogram is done too far in advance of a surgery.  Am I on the right path?   I guess I'm wondering, how long are they good for?

Take care,
Shan

     Hi Greg,  Tom G here from Howell.
You can send your scans to Stanford, But you need to become informed about the 2 types of bypasses that each place specializes in.
Dr Scott in Boston and Dr. Connolly in N.Y Specialize in the EDAS indirect by pass surgery. Dr Stienberg at Stanford specializes in the direct by pass surgery. 
     There are advantages and disadvantages to both types.I know from my own research that the direct bypass is a Much more invasive and risky procedure. 
Yes the results are immediate but this surgery should only be done if your arteries are severly occluded and immediate results are necessary.  Otherwise why take the risk ?

Think it over Greg while I go put on my body armor and brace for the attack.

Take care all of you!   Tom G

Hey all:

Just want to clarify (contradict?) TomG (no need for the body armor - everyone has their opinion, this is just mine). 

Firstly, Dr. Steinberg does BOTH indirect and direct depending on what he sees fit for the patient.  Furthermore, based on my research, direct bypass is no more riskier than indirect.  I had to do this research b/c when Dr. Connolly recommended no surgery for me, Dr. Scott and Dr. Steinberg did - but Dr. Scott recommended indirect (as he only does indirect) and Dr. Steinberg recommended direct (although he does both - in my case he did not think indirect would be beneficial).

So I had to decide which was the better alternative.  The impression I also got was that indirect is not always beneficial for adults b/c it doesn't always take.  This is why it is primarily used in children b/c it takes longer to develop (and is used in adults depending on what stage they are at with moyamoya). 

I was also told by both Dr. Scott and Dr. Steinberg that the biggest risk in either surgery is being under anesthesia for 7-8 hours, as it would be any surgery where you are under for that long. 

We too had heard from Dr. Connolly that direct is riskier as the immediate blood flow could be dangerous, and cause stroke.  We brought that up with Dr. Steinberg and he indicated that in all the direct procedures he's done (has Dr. Connolly done any direct?  I'm curious), he has not seen that happen due to the immediate blood flow. 

That being said, I believe Greg you should get as much information as possible.  If you send ur films to Dr. Steinberg, and he says to do direct bypass, you need to ask him as many questions as possible as to why, pros and cons, benefits, downsides, success rate, etc.  And you should do the same if someone recommends otherwise (no surgery, indirect, etc). 

Trina

It's great to hear/read what others have heard about MM... So I'd like to share what I've been told by the medical professionals I've spoken to.

- There are more options for children regarding surgery; however, children tend to have "indirect" procedures more often than normal.

- Direct bypasses are the "preferred" choices for adults; however, each surgery must be looked at on a case-by-case basis.  I know of adults who have had only "indirect" surgeries..and I myself had 2 direct and 1 direct bypass.  

There's so much factors that have to be considered...I'm guessing the amount of occlusion, how progressed this disease is, the available "good" arteries that are available for a bypass, etc. would all play a factor in what type of surgery one would need.  For me, I recommend sending films, etc. to as many MM specialists you feel comfortable with...then review all of them and make your decision from there.  

I think, like Trina had mention, there's other things like anesthesia and just the whole surgery iself (like any other surgery) that has a great amount of risk involved.

I had heard some jingling in my pockets, so I thought I'd throw in my  ...

Take care,
Shan
p.s.  HA!  Tom...I didn't catch on to what you were saying about the body armor until just now!  

Greg,

I have a little bit more to add to my earlier post.  When MM is suspected and an angio performed to confirm the diagnosis, it is imperative that studies are done on both the internal AND external carotids.  I've learned that many hospitals only look at the internal carotids to confirm the MM.  For instance, when Stanford does an angio, they do studies on both the internal and external carotids to look at potential donor vessels as well as confirm the diagnosis.

As other people have said, there are many factors involved for each individual patient.  If you have an angio scheduled though, it would be great if you could make sure they are studying both sets of carotids.

Just some more info for you to digest.  Good luck as you move forward with this process!

, Jill

Hi Tom,

Off the top of my head, I can think of at least 3 patients who have had the indirect surgery by Dr. Steinberg. Will check the log I keep to see if there are more, and let you know if the # is different.  (Of course, this is just from the surgeries I've attended, not a complete reflection of all of Dr. Steinberg's surgeries.)

No wammy coming from here, just discussion, which is good . . . .

Jill

Hi Everyone - I am jumping into this discussion and here's my 2 cents worth. As said everyone has their opinion and from my observations from this site the people who have had the indirect bypass usually experience more problems. I had 2 STA-MCA Bypasses and would not have gone for any other options. As a result of that surgery my blood flow was established straight away and I now live a very active full life, which I don't believe would have happened if I had the indirect surgery. My neurosurgeon has basically told me to only see him if I experience any symptoms and my next MRI will probably be in 5 years. I am a gym junkie now and have since had a baby after my surgery. But I respect that everyone is different and the damage they have sustained from MM is different but I think that if you are going to undergo brain surgery, the risk is there anyway so you might as well go for the method that guarantees the results. Don't worry - I have just put my hard hat on too as I am sure that you may disagree!!
Moira

Hi Greg,

Hope tonight's episode of Survivor is good.

I simply want to let you know that Kevin (Cubbie) and Mandy's surgeries where in an effort to save their lives. Meaning they both had had significant strokes. They are probably two of the more extreme cases. Just to give you an idea, Kevin (Cubbie) had a minus 2 blood flow on the left and only a plus 15 on the right.  At the time, I could tell he was "brewing" for another stroke as his ears were purple, skin gray, speech and balance worsening.  Dr. Steinberg informed me Kevin's arteries (both internal and external) were absolutely horrible.  For these reasons, direct bypass was the only way to go- period. Meaning in an effort to save his life. He had gone undiagnosed for several years. My point is what the others have said and that is every case is different.  There are so many factors to consider.  Although Kevin had had an extensive angiogram (lots of pictures and I mean lots of pictures) in Ohio, Stanford still did an angiogram. I was sitting outside the angio room and could hear the doctors say "WOW, look at that"!  Also, Kevin donated samples of his arteries to research as he felt that was his contribution to mankind. Before going to Stanford, Kevin was not expected to survive.  So, you can see why I am so grateful to Stanford and moyamoya.com for giving Kevin a second chance at life and why I believe you should leave no stone unturned. Education is the way to go and like Trina said, ask any and all questions of any doctor before having such a procedure.

I simply want to see you and others get the proper treatment so you don't have to be or become an extreme case like Kevin.  He had no time for an EDAS to take.  He needed blood flow now.  He got a plus 42 on one side and a plus 46 on the other.  That's a tremendous amount of immediate bloodflow.   He did not stroke as a result and if you could meet Kevin today, you would be amazed that he was ever in the horrible condition he was prior to Dr. Steinberg's surgical intervention. Just ask Jill as she was there when Kevin had boths surgeries.  And to think other neuro's sent Kevin home to die. You have to be your own advocate. You simply need to do what you think is best for you.  I'm not a doctor and like I said, every case is different. I continue to read and educate myself as best I can.  I believe you are working hard to educate yourself about moyamoya and available treatment options and my hat goes off to you.

Additionally, I believe, and Jill may be able to verify, that Dr. Steinberg may have done both direct and indirect on the same individual....meaning direct on one side and indirect on the other?  Like I said, I'm not sure about this.  Jill may or may not know if this is correct.      

Only the very best to you Greg in your journey for the proper moyamoya treatment for you.

Keep us posted.

Hugs,

Lore

Hi everyone!
This is a lively and extremely interesting topic.  I just wanted to clarify my statement about having the angio. done at Stanford.  After sending my films to the Stanford team, Teresa, as always got back to me very quickly.  I had been given an angio around 4 minths prior, but Steinberg was unsure if the MM had "spread" to my left side.  Instead of performing an angio in North Carolina to establish if it had "spread" Stanford said they would do it.  As Jill explained angios need to be performed in a certain way and Stanford wanted to ensure this would happen by doing it themselves.  Others who did not have an angio done at Stanford, they must have been satisfied that you definitely needed surgery?  Who knows?

Just to add my opinion, I would think that the direct would be more risky.  I am basing this on the fact that two vessels are being cut and then sewn together.  It seems more likely that a bleed could come from this graft. But this risk would most likely happen after the surgery, not during. When you read the info on the surgeries, the highest risk during the surgery is in keeping the blood pressure regulated while under anesthesia for so long.  I worship my anesthegiologist as much as Steinberg!

Take care all,
Stephanie ;

Hi... after reading Lore's post, I also wanted to add that Daphne was also in a very serious condition before her MM surgeries.  She'd had two, major strokes, and had been sent home to die with hospice care from Philadelphia.  She also had a very serious seizure disorder since she was three months old (Dr. Steinberg and Teresa think Daphne had MM in utero)

As I mentioned, she couldn't have a direct bypass because of her age, but - for her - the indirect prevented further strokes, and has dramatically restored blood to her brain.

Just kind of reiterates that each type of surgery has its unique benefits/risks for each individual, and that is why having an experience MM specialist is so invaluable.  One thing that we liked about Dr. Steinberg was that he had experience with both direct and indirect (and even omentum transposition, which is just fascinating IMO)   

Jenny