Hello everyone, I have only posted once before, back in early November shortly after my father suffered a cerebral hemorrhage, when a MM dx was first suggested  ... anyway, its been several months since my dads stroke, and his recovery has gone very well! He has regained almost everything that he lost as a result of the stroke, an occasional word slip up, and headache here and there, but all in all, his recovery is incredible!!We are so lucky! He is the strongest man I know, so I wouldnt have expected any less....
6 Weeks after his hemorrhage he received another MRI/MRA and his doctors here in Boston concluded that he did not need surgery, his brain tissues had adequate blood flow, and the risk of surgery would not provide him enough benefit. They informed him they would check him annually, and he was to keep his blood pressure down and avoid any activities that would cause strain on his moyamoya vessels and possible re-hemorrhage... this left us all feeling a bit uneasy and after much research we sent his info out to Dr. Steinberg. Last night Dad got a call from Teresa at Stanford, who said that Dr. Steinberg thinks surgery is necessary, or he will most definitely suffer another hemorrhage, or possibly a worse stroke due to lack of blood-flow. To be honest, I am pretty well read on MM, and have done a considerable amount of research since Dads stroke... so this did not come as a surprise to me... but it is very disconcerting that my Dads Drs. in Boston which is considered a mecca for medical science, did not recommend surgery...  We are currently weighing the options as a family, but it is most likely that Dad will be heading out to Cali in the next month or so for his STA-MCA bypass. Its so much to take in for all of us, and I would really like to provide my father with some stories of inspiration to carry him through this journey ahead! I have read many of your stories, and know you are out there, so if any of you.... especially those of you who are adults, have hemorrhaged, and have had surgery with Dr. Steinberg could once again share your stories, I would be eternally grateful!!! God bless you all, especially you parents ou there, I cannot imagine having to watch my 1 year old son go through this... I will keep you all in my thoughts and prayers. Thank you all for your support!

J

J.

Sending love to you, your dad, and all your family.

I had a severe hemorrhagic stroke when I was 49 in 1999. Had surgery with Dr. Steinberg, stroked again. This was before mm.com, back in the very dark ages of this still unknown disease.
After years of therapy and real life experiences, I can function decently, but my brain mushes-out when I'm tired and my speech retrieval is sometimes a mess. Wrote about in the "News" section here -- 'Story of a Stroke"  posted at the end of last year -- I think.

Each person is unique and has their own set of abilities and stroke deficits. Glad you're getting advice from Stanford. Hope it all goes well. I applaud your fact finding and efforts.

I'm glad to be alive, capable and able to share this experience.

My best to you all,

Linda

JNL wrote on Feb 16^th, 2010 at 11:15pm:

Hi J,  Welcome to our MM family!

I’d just like to add my  and say that IMO, in most cases the advantage of having surgery is LIFESAVING without a doubt, because with MMD you know a stroke/hemorrhage is coming, you just don’t know when. This is a progressive disease and without surgery the majority of patients will experience mental decline and have multiple strokes or hemorrhage, which can be fatal. I will never understand the advantage of a “wait and see” approach with this disease knowing the risk of what lies ahead without surgery. My question always is… if a doctor thinks it's safe to "Wait and see" because the patient has an adequate blood flow, then why did they have a stroke/hemorrhage in the first place? And knowing that this is a progressive disease and that it’s only going to get worse, I wanna know what are they waiting for? I don’t get it!

By having surgery you are drastically reducing that risk of a stroke/hemorrhage, and the majority of individuals who had successful surgery/surgeries have no further strokes after surgery, but with ANY surgery there are always risks, and with MMD there are individual factors that can possibility cause a stroke for some patients. For example, how advanced is the disease, a patients’ blood pressure, any other many medical conditions and so on, all of which could possibly cause a MM patient to stroke, but those risks are there with anyone, not just a MM patient. Each MM case is different. That’s why we always advise a MM specialist if at all possible. Experience is everything for success.  Dr. Steinberg has done over 700 successful MM surgeries with a complete MM team/program at Stanford.

In our family's case, my 20 year old niece had a mild stroke and they told us here at UOP that we had some of the best neurosurgeons in the country and that they knew about MMD, and in their opinion she didn't need surgery at this time, so naturally we believed them not knowing about this rare disease, and long story short, she ended up having 4 devastating strokes that left her in a coma, on a feeding tube, paralyzed and fighting for her life. We found this website and got a second opinion with Dr. Steinberg, she was medically airlifted to CA and he saved her life, thank God, but by waiting like the doctors here advised, her life was forever changed and she will never have a normal life as you and I know it. The damage was too severe. That's why I know what this disease is capable of without surgery.

The more you learn about this disease, the more you will find the facts speak for themselves and it will help you make definitive decisions in your particular case. Keep researching.

My prayers are with you.

Mar

Hi J,
I think I may have passed my story along to you earlier. I'm a 56 year-old woman. I had two very small ischemic strokes and after four months of testing was misdiagnosed with atheroschlerosis. The neurologist told me I would most likely suffer a major stroke within three years and there was nothing to be done. Fortunately the very first neruologist I met had mentioned that it was possible that I had Moyamoya. That possibility and much reasearh led me to Dr. Steinberg and immediate surgeries for Moyamoya. Those were in the Fall of 2007. This July, I will happily thumb my nose at the neurologist who thought I would by then be diabled by a major stroke. I have had no strokes post-surgery. I work 10 hour days, six days a week in my small business and find that my ability to think, plan and write is improving continuously. I will soon begin training for my second attempt at walkng a full marathon. The prospect of brain surgery is frightening. Even now, I don't want to subject myself to the angiogram and other testing required of the three year follow up. But I did do the sugery and I will do the three year follow up testing. I was and am still convinced that had I not had the surgeries, the devastating stroke with the loss of mental and physical abilities was a cetainty. There are risks that your family will have to evaluate for yourselves. I wish you all the very best.
Kim

Hope all goes well for your father and you!!!!

Keep us posted.

Linda