Hey Greg,
It's your NY neighbor here. Sorry I haven't been responding on the board lately -- too much going on over here and too stressed out to reply, so my apologies. Actually on your last post, I even sent Lore a quick email saying she should respond to your post if she had time, b/c I didn't have time to think through my thoughts to respond but felt you needed a response.
Well, this time, as I sit here wide awake at 3:30am surfing the internet (don't ask), and saw THIS post, I knew I had to respond.
First, I want to say that I agree with what everyone has said so far. None of us are medical experts so maybe we're missing something, I don't know. BUT based on what you have written, it sounds like MM to me. Before you didn't say you had collaterals (which, personally, I think is even scarier b/c at least I had the "benefit" of supplemental flow for some time, and it sounded like you didn't have that and was surprised you didn't have surgery immediately thereafter).
NOW it sounds like you do have collaterals, which I believe equals MM.
I think it's great that you feel good. However, like the others said, it doesn't mean you are not at risk for stroke. In my personal experience, I had symptoms and did nothing about them until I had a hemorrage (it was only after that, that I found out about my MM). You have the benefit of knowing that you have MM. Ultimately, I think you know that. Otherwise some higher spirit wouldn't be guiding you to still post on this board.
That being said, I too was curious to know why you haven't sent your films to Dr. Steinberg yet. In light of some discussions and points that I recall that were made during our Princeton gathering, I feel the need to clarify something to you.
Someone said then that Dr. Steinberg always determines MM and always recommends surgery so if you personally don't think you need surgery, there's no point to going to him.
NOTHING could be further from the truth. As a matter of fact, I know two people who have MM unilaterally, whose other sides are being monitored and look like they may have MM but don't need surgery yet. If Dr. Steinberg was a "surgery maniac" as was suggested, you would expect him to have done the other sides on those two people anyway. But he didn't. In other words, he doesn't have needless surgery. But he does believe in aggressively treating this incurable disease. And there's a difference between saying "he always suggests surgery" and "you have MM and your best option is surgery". My personal opinion is if a doctor says you should "wait and see" on what they deem stage 4 MM (as one doctor did for me), then they don't know MM. It's not to say any doctor knows a whole lot about MM. It's a "rare" disease indeed - but the reality is that the symptoms make it such that there really is only one treatment option as far as is known today.
Ok, so now, let's say you are even expecting him to say it's MM, and have the surgery, so you are not bothering. What do you have to lose? You only have another expert opinion, FOR FREE. You don't have to have the surgery at Stanford, nor do you even have to decide to have the surgery if you don't want.
The bottom line is it's your life. When I was doing my research and trying to decide what to do, I went to three doctors, who said three different things. Within my own family, there was much debate with one family member not wanting me to have the surgery b/c they thought it was riskier to have it than to not have it.
But ultimately, I decided, with the surgery, especially with an expert, I couldn't go wrong. If I stroked and died at the table, it was my time to go, but at least I made the effort to make a better life for myself. It was a treatment well worth it. Is the risk gone? Never, but is it much less? Yes. I don't think to myself all the time, "hmmm, is today the day I could stroke while driving home from work again? Will I be lucky and survive like last time or be worse off?". And heck, who wants to stroke in a car on their way home from work while cursing their boss for makin...ok, Lore, I digress - but I know you're feelin' me!
Anyway the point is I just don't think about it anymore. Everyone is different and I know for some, they improved 200% and for others, they saw no change (and I'm sure there are a few who feel worse than before - it's statistically impossible not to have that case). But since you say that you feel great, that's why I tell you this. For me there wasn't much change. I still have minor symptoms, as I did before the surgery, but I don't feel like a time bomb waiting to blow.
And finally, it's also important to remember something else. Dr. Steinberg does not make the decision on his own. He has a team of people - what they call "Monday night case conference". Neurologists, neurosurgeons, neuro radiologists, fellows, residents, nurses, etc. all attend. They collectively discuss each case and make a decision. So you're not getting one opinion, you're getting multiple. Again, FOR FREE (things are hardly ever free in this world and anyone who knows me, knows, if it's free, I'm on top of it!!).
It's important to remember that not a lot of neurosurgeons, let alone doctors, do this. Your second/third opinions may be interpreting your films on their own, with the report read by a RADIOLOGIST, not necessarily a NEURO RADIOLOGIST who would more likely have experience with MoyaMoya than a regular one. I am not saying this IS the case, as I don't know, but it MAY be the case.
So all that being said, just send the films. Send them to Dr. Scott too (even though he's mainly children, I sent mine anyway) -- and send them to Dr. Fukushima, or any other neurosurgeons. If you are confused by the confusing opinions, get more. At some point, your heart will tell you what the right diagnosis is.
As you know, we're all here for you (well, maybe I won't always be there for you at 4am -
), so we just want to make sure you know all your options and you are doing what's best for your health.
Until the next NE gathering...
Many hugs,
Trina
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