JNL wrote on Feb 16th, 2010 at 11:15pm:if people stroke again after having surgery, what is the advantage??
J
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