Hi, Welcome to our MM family.

I must first start by saying; I can’t emphasize enough how important it is that you find a doctor with REAL MM experience, ASAP! From what I just read in your post, please forgive me, but IMO, it doesn’t seem as though your doctor has much experience with MMD, but rather seems to be reading statistics. Also, you'll be happy to know that your statement that "MM is a death sentence for adults and the surgery only postpones the end by a short period of time, is absolutely incorrect as well!! Yes, MMD can be fatal without treatment, but with treatment, (surgery) and a MM experienced doctor, it is absolutely successful with an excellent outcome!!. I don’t know your specifics, and I am not a doctor, but it's been my experience over the years, that with a MM experienced doctor, the success rate is absolutely amazing!! Also, IMO, you can’t base your decisions on statistics with MMD, because no two cases of MM are alike because of everyone’s individual factors involved. If you’ll do some updated, recent research about MMD and speak with the many who have had successful management, you’ll see that MM surgery is VERY successful if caught early before stroke complications and bleeding.

The facts are that this is a progressive disease, it gets worse over time and you’re ALWAYS at risk for a stroke with MMD, so prompt treatment is so important! Delay in treatment is the particular pitfall we see most often because of the lack of experience and understanding of this disease in the medical community and delay in treatment is dangerous and risky. With MMD you know a stroke is coming, you just don’t know when. We see all too often many doctors who lack MM experience, tell their patients to wait for treatment or they tell them not to have surgery because it is too risky, but what many new patients do not know is, although you may very well have a good neurologist/neurosurgeon, many times they just aren't educated enough about MM “the disease itself”, which makes the "risk" more about their lack of knowledge of MM, rather than actual risk to the patient, and what’s important to know is, surgical management is the ONLY treatment for MMD.

That’s why we always urge any new patients or their family members to please learn all they can about this rare disease. If you arm yourself with knowledge about MM, when you come across this lack of experience in the medical field, they won’t be able to steer you in the wrong direction like we see very often. You’ll then be making informative decisions, and that’s so important when dealing with a rare disease, and the more you learn, the less scary it is, because you’ll learn that this disease CAN be treated successfully with an excellent outcome, IF you go in the right direction and get the proper treatment with a doctor that has experience treating moyamoya, the disease.
 
If you are ever in doubt, you have an option of mailing a copy of your films to a MM expert for a second opinion. Getting a second opinion from a MM expert is very wise when dealing with a rare disease. The MM expert will contact you after reading your films with their expert opinion, and then you’d know if you’re on the best path for your particular case. I do not know if you have any experienced MM experts in Israel. Here in the USA there are only two MM experts that deal with MM on a daily basis, but both experts have done hundreds of surgeries for MMD and treat this disease successfully on a daily basis.

I don’t know if you viewed this Stanford video under Links on the website, but if not, this may be helpful in your research in understanding MMD a little better.

Stanford video – Moyamoya Disease
http://www.moyamoya.com/stanfordvideo/moyamoya2.wmv

The many people here who dealt with the lack of MM experience in the medical field, found that they had to learn all they can about this disease and get proactive to force the help they needed, to prevent the possible stroke while waiting for treatment. You can’t wait around. Time is not on your side with MMD, and a 100% blockage is so very serious. So again, please do all you can to get EXPERIENCE on your side ASAP. It may save your life.

If you need any help or have any questions, please feel free to ask. There are wonderful people here whose been down the same road you are and will help you in any way they can.

You'll be in my thoughts and prayers.

Mar

Hi Avi,

Thank you so much for asking about my niece…bless your heart. She is doing wonderful, thank God. It’s because of what happened to my niece that I get so worked up in some cases and give such long answers. Sorry about that, but I would hate for anyone to go through what she did, when I know there is successful treatment available. She did not get the surgery when she should have and suffered 4 unnecessary strokes at 20 years old. We too had to travel across the country to get a MM specialist, as do many. She does take medication to prevent seizures and an aspirin. She also has annual follow up testing to assure all is as it should be.

I’m so sorry to hear you don’t have the experience with MM there in Israel. That breaks my heart. That’s why now I believe you must get proactive and find someone who does have experience with MM and ASAP!!. Yes, you certainly can contact a MM specialist here in the USA. Many people have to travel to get a MM expert. The best adult MM expert, IMO is Dr. Steinberg at Stanford. They say the MM program there has actually surpassed the Japanese centers. This is the strongest Moyamoya program currently in place....anywhere! 
Here is the link to Dr. Steinberg's page: http://cgi.stanford.edu/~amlin/cgi-bin/find_specialist?action=get_doctor&doctor=garyksteinbergmdphd

His Nurse, and right hand man, so to speak, Teresa should be able to point you in the right direction with any issues. She is absolutely wonderful and will help you if at all possible. Her email is: teresab@stanford.edu

Jill, at Stanford, will help you in any way she can as well, she is the greatest, and is a member here at MM.com who has a daughter who had two successful surgeries at Stanford: macinnes@stanford.edu
Please contact them. If anyone can help you, they will if they can.

Please again forgive me for saying this, but your neurosurgeon was absolutely wrong when he stated the STA-MCA wasn't successful in many cases. There are facts in the research to prove otherwise. A statement like that only proves his lack of MM experience. There are several types of surgeries for MMD, but this where the experience with MM, "the disease" is so vital. The MM expert will best know the surgery that’s suited for your individual case. The direct bypass (like STA-MCA) is usually used when there is a urgent need for blood supply to the brain - for example, if one or both internal carotid arteries are completely blocked, as it is in your case, but what’s important though, you would need a proficient MM experienced surgeon. An indirect surgery uses a muscle from outside the skull, transplanted onto the brain, then the blood supply from the muscle can take anywhere from 6-12 months to grow into the brain an establish a new blood flow. This is called and EDMS [usually]. An indirect bypass will often be used if the narrowing has not yet progressed very far, and also, most children have the indirect surgery because their donor arteries are too small for the direct bypass. These are just some of the important factors to consider, and why you need an experienced MM neurosurgeon on your side to be successful.

Again, sorry for the lengthy reply, but there’s sooooo much information you need to know when making these important decisions. I realize you have to make decisions about your care as you see appropriate, but there is just such a huge lack of knowledge and understanding about this disease throughout most of the medical profession, and we want you to have the facts and help you in any way we can. Don't be affraid to ask any question you want, no question is too small.

I hope this helped. Good Luck! 

Mar

I agree that you need to have someone with experience wiyh moya moya take a look at your case.  It took almost a year for my diagnosis and a year almost to the day from my stroke to the surgery, which happened on September 11.  Don't give up hope and also look at the resources this website has on doctors who do have accurate information on this disease.  i'm new to this website as well.  i've gained a lot of comfort from this website and realizing that moya moya is not a death sentence.  i was also very fortunate to find someone within an hour of my home that trained under Dr. Steinburg and had accurate information on moya moya.

Smitty39

Thank you smitty39 and skay for your answers to me.
I do appreciate that.