Hi Justin...Welcome to MM.com....know you are in a tough position...concerned about your mom, trying to help her from all angles.  If you have been researching the details of MM on some of the links you will see that this disorder is a progressive disease and without surgery the risk of having a major stroke is more likely...a stroke that could cause irreversable damage.  It would be a wise choice if your mother had a second opinion mainly from a doctor that specializes in MM on daily basis.  You could simply send her films to one of the doctors (Dr. Steinberg for example) and they can provide further suggestions.   The "muscle graft" surgery does take longer to work...6 months to a year or even up to two years or so.   If you read the medical information it will list the various types of surgeries available for this disorder.  Including the bypass surgery that bypasses arteries that are affected by the MM.  Only certain arteries are affected by MM.

1 -  Yes to expecting a stroke (s)...without surgery.

2 -  7% chance of family member having MM.  If you are not having symptoms then more likely your don't have it but be educated about it in case something happens to you then you can suggest to the medical professional that your mother has MM and that may be a possiblity for you.

3 - Surgery is the only option.  Without it one will most likely suffer a stroke and hemmorage.

As for smoking...unfortunately it damages those tiny air sacs in the lungs that provide oxygen to the blood.  The arteries take the blood throughout the body and the veins bring the blood back to the heart and go through the lungs to make it "oxygen rich" before it exits again out of the heart via the arteries.   MM patients already have restricted blood flow to the brain therefore its important to have "oxygen rich" blood.  The more "oxygen" that gets to the brain the more clearer minded the person is.   Less oxygen to the brain, your mind is not as clear, not as focus, short term memory or various types of forgetfullness occurs.

There are others on this site that can help you further as they also worked with their parent through this MM disorder and concerned about them being afflicted by this disease too.

Will keep your mom and your family in my prayers.
hugs,  CarasMOM

Dear Justin,

Welcome to our MM family!  I am glad you found your way here.  You will find some wonderful people on this site, all who are ready and willing to offer advice and give you whatever support you need.

I am sorry to hear of your mother’s situation.  As I read your post, the primary question in my mind was “Who did her surgery?”.  If you spend any time reading this site, one of the most consistent pieces of advice given is to be sure the neurosurgeon is an expert - not just in neurosurgery, but with Moyamoya.  There are many doctors who are able to perform the surgery, but who are not familiar with MM the disease.  MM is still in the rare disease category, and there are very few neurosurgeons who treat patients with it on a DAILY basis.  I don’t understand why you’ve been told that the results are “inconclusive”.  If your mother had an indirect bypass, it does take several months to realize the full benefits of the surgery.  If she had a direct bypass, the effects are immediate - either a new blood flow to the brain has been established, or it hasn’t.

I understand your mom’s wish to not undergo more surgery.  Surgery isn’t fun.  Even the best neurosurgeons can’t promise full recoveries from damage from a hemorrhage or stroke.  If she was my mom, though, I would definitely try to convince her to get another opinion.  It wouldn’t necessarily have to be an invasive process.  If she has had an angiogram, the films could be sent to a doctor for interpretation, and you could go from there. 

To try to answer your specific questions:

1 – MM is a progressive disease.  If untreated, the chance of stroke and/or hemorrhage definitely increases with time.  If your mom isn’t getting an adequate blood supply to her brain, then yes, strokes could increase. 

2 – You should be checked for MM if you have symptoms such as tingliness or numbness.  Many MM patients also present with migraines prior to diagnoses.

3 – I’m not sure what you’re asking.  Preventive surgery to avoid MM?  Preventive surgery for you?  Your mom?  Unfortunately, as the medical profession doesn’t know what causes this disease, they don’t have preventive measures (surgery or otherwise) to recommend.

I have an 18 year old daughter who was diagnosed with MM in May 2004.  Tara presented with TIA’s (mini-strokes) and a 10 year history of migraines.  The occlusion on both sides was very severe, so she had her two surgeries in June (two weeks after diagnosis).  Fortunately for us, surgeries occurred prior to a major “event” such as a stroke or hemorrhage.  We live in California, and Dr. Steinberg, one of the premier MM specialists was just a ½ hour away at Stanford.  A year out of surgery, Tara is doing very well.  Tests show an adequate blood flow to her brain, so her prognosis is good.

My suggestion is to spend time looking around and reading this site.  There is a wealth of information here, and the more educated you are about MM, the better prepared you’ll be to advise and encourage your mom to seek another opinion.  Please don’t hesitate to post again – we’d love to be of support to you!  Best wishes to you and your mom . . . you will both be in my prayers.

Warmly,
Jill

Excellent point to make Mar, and so true because you think one side has not worked (which it needs more time down the line to decide that), I think doesn't mean she should not get the other side done she will still have tia's that will eventually lead to more major strokes. Thank God she has recovered this well my daughter is still not able to use her left arm and walks with a severe limp and has deminished speach and mental statis. It stinks to have to debate with your Mom but it could mean her life and I'm sure in the end she will thank you. Please get a MM specialist as everyone has said because it makes alot of difference in alot of cases, maybe there is a different more suited surgery for her. Good Luck! Thoughts and prayers are with you all.
                              Nancy