Hi all I know its been a longtime since I have been on here.  But I am still alive..Lots has happened since i have been on here..Chad and i got our own place with the boys, I got my SSDI and SSI approved finally. I was on Lunesta for sleeping for mind racing and I got the results from my surgery that I had in Boston on Jan 2006.. Well, where to begin..My son had his apendix out and i was at the hospital when Chad got the Call from Dr. Ogilvy saying that since the surgery and testing that there was no change and no new growth of the arteries and vessels in my brain..but the upside to that is that the surgery but my MM in some type of remmission like cancer,  It hasn't gotten any worse or any better since May 2005 to present I have had 13 TIA's and 3 seizures.  Which was expected.  I had my most recent TIA about a month ago..Now getting back to myself as much as possible.  But i wanted to let everyone know that I am still upright and breathing  LOL  Love to all!!  If anyone has any questions PLEASE don't be afraid to ask ok?  I have not had to take any Lunesta since May 2007 cause Chad(my fiance) and I bought a new bed.  I only have ot take it when i have bad days...

Love to all and i am sorry for being away for so long

I will elaine..I have missed everyone,mostly you elaine..So sorry to hear about the broken bones..I however don't have that prob..I still have mini strokes which i am sure that you and everyone understand how frustrating that can be

Love too all of you in the MM family

No my TIA's is to be expected because of the agressive MM I have..I do everything backwards from a reg MM patient.  I was tested for sleep apnea and it was neg and no other sleep disorder either. I called my Dr's one here in Maine and the other in Boston and asked both of them about the TIA's and there is nothing that they can do cause i can't take TPN because it will speed the TIA's up more and can cause a BIGGER stroke. So I have to live with them and try not too get too upset about things..Which i am Irish and Scotish.  After having 13 TIA's i technically should be dead by now..LOL But i keep plugging along and taking everything that this disease throws at me in stride and laugh..I refuse to cry about it.  So i make jokes all the time and keep laughing which is only thing and the best thing that i can do at this point.

Well I would be asking a lot of questions as to why I would be expected to still be having TIAs. Especially after having surgery they should not be occurring still, and to me this would be a sign that the surgery hasn't worked as it should. You claim your doctor is full bottle on MM but I would be querying why he is not worried about the TIAs. TIAs are a warning sign that not all is right, and for your sake as well as your family, you should be DEMANDING answers, as far as I am concerned, even if you do have a "bad" case of MM it is still not normal to experience TIAs.
MM is MM - there are mild cases, extreme cases but it still boils down to MM in the end, and you should have a reduced risk of having TIAs or a stroke after surgery and it concerns me greatly that you just accept that "this is as expected". I am sorry to be blunt but what kind of quack says a TIA (which can lead to a stroke) is as expected after surgery?!!
I have said it before and I will say it again - find a decent doctor who takes your life seriously - it is no laughing matter and this cavalier attitude could kill you!
Moira

Oh boyaboya.....do WE all have moyamoya! And Upsided at that!

Elaine....I cringed reading about your falls! Please do take care....and be safe. Hopefully you'll always have people around you if you are going out and about. I'm so sorry for all your suffering....that is a lot for one person ...... you can "pass the baton" to someone else now! (((hugs)))

Laura..."HB" I too am worried about your Tia's....and "if" you are recieving the best medical advise for your situation. You did mention that you have sought care in Boston.....that's a great place for cutting edge medicine...including Dr Scott of Childrens Hospital. Do try for a few opinions.....YOU have to be proactive for your own health and not take anything for granite. Surgically doing the other side.....may just be the thing to end your recurrent tia's. It really comes down to "risk vs benefit" in any health crisis. Of course, you have to get an expert pulmonolgist to give you the green light. Moira....is straightforward giving "tough love" and solid advise.....although we may not know all the nuances of your situation......we just want to be sure you have not left any stone unturned. Multiple tia's are sort of like living in Los Angeles with a lot of little tremors.....it could be a precurser to "the big one" (I do hope not)

We care about you girlfriend!!!!! Big Hugs....Diane : )

Laura,
              You probably haven't seen any of my posts I'm an old timer I was one of the first people on this site. I don't want you to think I just came out of nowhere and don't know of what I speak, with that said........Your just not gettin it. Get another opinion, maybe your lungs in another surgeons opinion could withstand another surgery. You probably should have some positive affect from the surgery don't ya think. Maybe someone else will have a different perspective on it, maybe not, but I know I would feel better knowing I went every route possible and got more than 1 opinion rather than saying after another stroke that maybe I should have gotten a second even third opinion. Just send your information to another doctor and see what they say, Dr. Steinberg did my daughters surgery in one month after her brain cooled down from 4 devistating strokes that have dramatically changed her life when another surgeon told us to wait a year....in a year she would not have been here. Thank god for D.J. and his experience that he shared with us.
I know its alot to put yourself through but you are worth it. If the results are the same at least you know you've done everything you could. Good Luck and God Bless!
                             Nancy