Okay here goes........19 months ago my mother suffered a hemmorage and laid unconscious for 8 hours before anyone found her. She was diagnosed with Moya-Moya Disease. We were told she would most likely not survive due to how long she was unconscious before anyone found her. She eventually made it out of ICU and rehab and went home. She had to retire from 15 years with the government and needs assisted living, mainly due to lacking short term memory. Her motor skills arent what they used to be, consistant with a stroke victim. Her short term memory ranges from decent to non-existent. She had a surgery where they implanted tissue on the surface of her brain, im not sure what the name of that surgery was but I'd like to know.  Its been 10 months and we were told the results are "inconclusive"

My mother refuses to get another surgery because theres no point if the first one was not successful. And she doesnt want anyone operating on her anymore, as she put it. Myself and her husband respect her decision, and while we would like for her to have the surgery, we agree that if the damaged part wasnt repaired, the other side would not do any good. The surgery would not improve quality of life, but if successful it could be preventative. Its very tough to sit and have her tell me she doesnt want any more surgeries, and have her acknowledge what will happen if she doesnt get them. She also chooses to smoke cigarettes (which she was told not to by the neurosurgeon). Should she be allowed to do what she wants? I don't think its right to tell someone with an illness what they can, and what they cant do, or force them to do something or not do something.

My mother has been recently suffering mini-strokes. The first about a month ago, then 2 last week within a hour of each other.

1- Should we expect the strokes to increase and then another hemmorage?

2- Should I be examined for the same disease?

3- Is there any preventative surgery that can be performed?

Im also very interested to hear other stories with advice as this situation is causing me alot of sadness and grief.

Thank you very much for reading

Justin
from Maryland     (TotalEclipse0013@aol.com)

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

Hi Justin!

Welcome to our Moyamoya family.  You will find that we are all very supportive and will assist in any way that we can.  

Just wanted to let you know that I sent you an email to your AOL account as I'm not too far away from where you live.  I included my phone number, also, in case you would like to talk about things.  

Michelle

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

Hi Justin, [smiley=wave.gif]

I too would like to welcome you to our MM family. I’m so sorry to hear about your mother and her diagnosis, but you've come to the right place for support and friendship. Jill is right, what a wonderful group of people here, who understands all to well your frustrations and your fears.

I couldn't have answered your post any better than Jill has, but I would just like to add that I certainly agree with her 100% in all that she said. It must be difficult for you, no one likes to argue with someone’s right to make their own decisions, especially your mom, but with MM disease and the neurological problems that result from it, a mm sufferer desperately needs someone to learn all they can about this disease and help them with their decisions, because they may not be capable of it themselves during their course of the disease.

From what you said, I’m assuming your mom had surgery only on one side, and you all think it didn’t work, is that correct? Well, maybe so, but not necessarily. Without knowing her specifics, I still think I can safely say that, with MM disease, if you’ve had surgery on one side and it’s progressed to the other side, you will still have the same risks and problems associated with this disease, but it doesn’t necessarily mean the first didn’t work, so your opinion that if the first surgery didn’t repair the damage, then the other side would not do any good is not necessarily so with moyamoya disease. Your brain simply always needs the proper blood and oxygen, and there are successful surgeries to help that. As mentioned, MM is progressive, so it’s common to have surgery on both sides. In most cases the surgery is much better than the risk of what could happen without it, and we’ve seen it work with many people, IF they had the appropriate treatment. There are several different types of surgery, depending which is best for their condition. That’s why we always advise and emphasize a second opinion with a MM expert; they have the experience to know the many options best suited for each individual case. Unfortunately we’ve seen all too often the lack of experience with this rare disease for them to know all the options available.

This is not just my opinion, but facts. Please read all you can about it. Knowledge about this disease is a must and will be your best guide through all this.

Please know your mom and you are in our thoughts and prayers and we'll be here to help in any way we can.

Mar

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

Justin,

I would definitely get an opinion from a MM expert.  I personally saw Dr. Nakatori Fukushima at Carolina Neuroscience Institute.  Dr. Fukushima is amazing!  You can find more info on him at:  http://www.carolinaneuroscience.com/http://www.carolinaneuroscience.com/.  Here's some quick info on him..
"Dr. Fukushima is internationally renowned for his research and clinical work in the treatment of skull base tumors, pituitary tumors, cerebral aneurysms and arteriovenous malformations, trigeminal neuralgia, and hemifacial spasms. Named Honorary Professor at Karolinska Institute, Stockholm, Sweden; University of the Mediterranean, Marseille, France; and University of Berlin, Germany, he served as Professor of Neurosurgery at University of Southern California, Los Angeles and at Allegheny Neuroscience Institute, Pittsburgh, Pennsylvania.

Dr. Fukushima is now Professor of Neurosurgery at both Duke University Medical Center, North Carolina and West Virginia University and Director of both Carolina Neuroscience Institute and International Neurosurgery Education Foundation."  

I was initially told that "there is nothing" I could do.  I was told "surgery is too risky."  However, I didn't give up...and I encourage you, your mom and family not to either.  We'll keep praying for you...

Take care,
SFH