hey guys, i'm a moyamoya patient and was diagnosed last august 2008.  I just want to know more about moyamoya without undergo on brain surgery.  I've only taking through oral medication and it seems so far effective although sometimes i had headached. I don't want to be operated coz i'm afraid and i dont have much money for this.
anyway its nice to know that there such moyamoya website and a group like this.

hope to hear from you soon. thank you and regards.
betty :(

Hi Betty

It is nice to find a site with people who know about MoyaMoya.  I live in the UK and not a lot is known here about it.  I was diagnosed in 1980 and have not had surgery.  I have had 2 bleeds first in 1980 and the second in 2002.  I too am reluctant to have surgery because I've always been told its too deep but would not advocate this decision I think you should try to talk to a MoyaMoya specialist about you own personal circustances.  Hope it all goes well for you.

Betty,
Welcome to the MM family. MoyaMoya is a progrssive disorder that needs surgery, and proper diagnosis by a MM Specialest. Dr.Stienberg is the leading USA specialest of MM, and is willing to help anyone out. Everyone has different needs and has had differnt surgerys to help the blood flow to their brains. To not have the surgery done you will run the risk of haveing a major stroke with perminit parallisis, or even death from a stroke. I don't want to scare you, but the statictics are here. I had a stroke, and was lucky that I regained almost everything back. I did not want to have another stroke so once I saw my MoyaMoya specialist Neurologest he said I need surgery to help regain my blood flow so to reduce my changces of having another stroke. very soon after my surgery most of my paralysis and migraines dissapered unless I am extreemly tiered. Agian I am Lucky!! I don't want you to not get the proper diagnisis and then have a dibilitating stroke, so please find a MM specialest there is a listing in this sight under "Sugens with Bypass experiance' that will help you locate a trusted MM neurologest/surgen.
I hope this helps,
Becky

Hi Betty and Bev,
As Becky stated, you need to find a neurologist and neurosurgeon who has a great deal of experience with Moyamoya - the more experience, the better. Surgery is not always immediately recommended for every one who has this disease. It depends on whether the person is having symptoms, such as TIAs, stroke, mental decline, physical problems, like stuttering, weakness, fatigue,.. and also upon the results of special tests that are done to determine what the blood flow is actually doing - is it getting to all of the brain, what is it's reserve capacity. Even if your doctor determines that the surgery is not needed at the present time, he will need to monitor you regularly (usually every year), as the disease is progressive.

The only reason I can imagine that a doctor would say the Moyamoya is "too deep" for an operation, is if he was planing to stent the blocked artery. The one slide I saw at the recent International Symposium for Moyamoya that will be forever in my mind is the one that said in large red block letters NO STENTING FOR MOYAMOYA! Every Moyamoya patient who had an artery stented died. The revascularization STA/MCA surgery that most of us talk about here is not performed in the deep tissues of the brain. It is done very near to the surface of the brain.

Please send your films to Dr. Steinberg at Stanford Medical Center in California for his opinion. If you can not have the surgery done there, ask them for a referral to a neurosurgeon in your area. Your life is precious to you and to those who love you. Don't  let this disease take it from you. You can beat it.
Kim

Well said Kim. Moyamoya is not a disease that you can wait and see and hope for the best. It is not a disease that you can sit back and say this wont happen to me. Moyamoya is a disease that you have to take action with. Let a specialist play a role in the final decisions. Your life is far too precious. Surgery is scary but once it is behind you, there is a whole new world with a lifetime ahead of you. There is also a great support system on here. The people on here will be my family for life. Many of them I feel I owe them more than I can ever repay them especially my neurosurgeon and Jill. The words of encouragement, thoughts and prayers are enough to pull you through the tough times and help you rejoice in the triumphant times.

Reagan

Betty and Bev,

Please please please listen to Kim.  She knows what she is talking about.  
I was told in 2005 by a vascular neurosurgeon to never let anyone perform surgery on me to open my internal carotid arteries for any reason.  I would most likely have a catastrophic stroke and die.  I beleived him for three years.  He never even diagnoses me with MM, he just told me that the occulsions were from an old stroke and that I did not need any treatment.  Last year I had another stroke, minor with not perminant damage.  I was sent from one specialist to another and back again.  Still no answers, no one new what to do or what was wrong with me.  Finally in March of this year a doctor in Chicago diagnosed the MM and I had surgery at Stanford in April.  There was a doctor in Indianapolis that told me I may need a bypass surgery but he was not sure and did not diagnosis the disease.  I told my family that there was no point in going back to see him becasue I would never let anyone operate on my brain.  Never say never, after I finally was given a diagnosis I did as much research on MM as I could and sent my images to 4 MM specialists.  They all said the same thing, you need bypass surgery.  While all of this was going on I had another stroke.  It was in early March.  Again there was no perminant damage.  I decided that it was time to do something before I had a really bad stroke and ended up a burden to my family or dead.  I had my surgeries in April of this year and am doing great.  
I am also a registered nurse and have spent many hours learning as much as possible about this disease.  I have asked Dr. Steinberg's nurse, and it is true, all patients with MM will eventually need surgery or they will have a catastrophis stroke.  The trick to living with this disease is to stay one step ahead of it.  Have the surgery before you have a really bad stroke or a homorrahge that causes you serious harm.
The statistics prove that stents do not work for MM patients.  The surgery that is done is performed on the surface of the brain.  Kim was exactly right.  
I hope that you both listen to what we are telling you and go see a MM specialist.  I wish you both the best of luck, and remember we are always here for you.  

Tracie

betty wrote on Jun 25^th, 2009 at 10:31am:

I just want to know more about moyamoya without undergo on brain surgery.

Hi Betty, Welcome to our MM family

I can only add, that surgery is the ONLY treatment for MMD, and without surgery, the majority of individuals will experience mental decline and multiple strokes or hemorrhage, which can be fatal. This is a progressive disease and no medication stops the arteries from narrowing, so you know a stroke is coming, you just don’t know when.

The more you learn about this disease, the less frightened you’ll be, because you’ll learn that this is a treatable disease in most cases. I’ve seen so many doctors over the years tell their patient that they can’t have surgery, only to later find out after a second opinion, that the "risk" they told the patient was more about their LACK of knowledge of MM, rather than actual risk to the patient.

Arm yourself with knowledge about MMD. There is a wealth of information here that will help you. It saves lives.

Mar

My original diagnosis in 1980 was MMS so I don't know if that has made an impact on the no surgery decisions that have been made by my neurologists over time but I do agree you need to talk to a neuologist who is familiar with the condition as the advice off one who is not can lead to further complications.

Hi Bev,

I can’t even count how many MM patients over the years have been MIS-diagnosed with MS, my Niece as well.  Those patients were diagnosed with MS simply because their doctors’ had little to no MM experience. My advice would be to send your films to a doctor that understands this rare disease for a second opinion.

Mar

Hi Mar

Not MS but MMS (MoyaMoya syndrome).  I was lucky in 1980 that I was seen by someone familiar with the condition.  It was in 2002 that that the diagnosis was questioned but an MRI scan confirmed MoyaMoya.  I think it was questioned as I hadn't had any other problems related to MoyaMoya.  I think my current neurologist is familiar with it thats why he questioned the original diagnosis.

Bev

I’m sorry Bev…I misunderstood. My bad! I see the MS misdiagnosis so often that I thought that’s what you meant.

This disease is at times silent. Sometimes MM sufferers’ have no clear obvious symptoms at all when it strikes. My niece was one of them. Not all cases are alike.

I’ll keep you in my thoughts and prayers.

Mar

No worries.  Thanks for your thoughts and prayers.  I am thankful daily to be a survivor.

Hi Bev and the rest who respond to my message board.  Thank you very much to all advised. I will take note all your concerns and the information you have given. How  I wish my life live longer.

Still I'm taking my oral medication and had not yet been operated.  Anyway, until now I had not been go to a higher places and even riding on a plane as per my doctors advised.

God Bless for us may we live longer adn happy fulfiling our goals in life.

I keep you posted from time to time.

regards,
betty :)

Betty and Bev,  
 Please take the advice of Mar and the others you have heard from. I had to suffer a major stroke in 2002 before I found out I had mm. I lost peripheral vision on the right and weakness in the right side. I was lucky not to have anymore damage. I had indirect by-pass surgery in 2003. It was the best decision I ever made. I just celebrated my six year anniversary this month. Oral medication is not going to stop this disease. Surgery will lenghen your lives. I know that you are both scared as I was. I was told at the age of 51. You both have your age going for you. Don't wait.

Sharon

Sharon

The no surgery decision is due to the fact that my neurologists have all said surgery is not an option for me  I am 29 yrs (diagnosed with MM in 1980) 7 yrs away from major bleeds.  I don't suffer from headaches and have never had TIAs  Due to all the comments I have received from this message board I have contacted Dr Steinburg about my situation but will also be talking to my own neurologist the next time I see him.  

Hi Tracie

Congrats to your ne baby,  we have the same feeling until now I had not been through surgery. I recently, went to my doctor for check-up she gave be another medicine which is "sibilium" coz I'm complaining my head.  I feel sometimes my is "shrinking" and feeling with muscle spasm. :( anyway,  but I took the advise of Kim and the rest of the  guys. Well for me come what may, as long as I feeling well, dont get mad, stress, pressure I gave up my work already and stayed at home reading, watching TV, listening to radios following my doctor's advise to relax and cool, chill and happy on whatever I'm doing right now.
And not but the least, Prayers of course.

Regards to all,
Betty :)