Hey everybody. My moms films are supposed to be sent to Dr. Steinberg in the morning, and my dad was wanting to know about what happens after surgery. Stuff like, what are the chances of this happening to her agian after having the surgery(provided that is what happens), what have the longterm outcomes been for the patients that Dr. Steinberg has done, any recurrences, other problems like TIAs. I would like to hear some of your experiences and what they told you for longterm prognosis after surgery.  And just a little up-date for ya, momma is being moved to the rehab building tomorrow and is feeding herself with her left hand. She is still having quite a bit of trouble with right side weakness and trying to find the words she wants to say and a bit of slurred speach, but she is really good with one word answers. She has sh#* down pat [smiley=bag.gif](she gets really frustrated when she can't find the words she is trying to say :))                Nikki

Nikki--it is so good to see that have kept your sense of humor   like the word, sh--,, during this very difficult time.  Prayers are with you, your momma and father.....God Bless you....PatM

Nikki,
           Awesome news about the films and your Mom there is sure someone up there watching out for her. Was your Dad able to get the angio too? I'm am so releaved that it is moving forward the sooner the better thank God, I'm thrilled.
                Nancy :)

Hey Nancy, yep. We are getting angios, CTs, MRIs, and the ultrasound they did the other day all sent to Stanford. I am so anxious to see what Dr. Steinberg has to say. Oh yeah, that includes all the scans and angios since the first stroke/bleed in 2002. She sure does have someone watching over her, but I still can't help but wonder why. Maybe just to remind people that miracles do happen, no matter how hopeless things may seem. I don't know, just brainstorming. Anyway, hope you and Mandy are doing well. Talk to ya soon.                  Nikki

Yup I agree miracles do happen everything happens for a reason, eventually you'll realize why. Mandy and I are fine. I'm so excited for the results of Dr. S findings too and its not even my Mom. Keep us posted I know you will.
                  Nancy

I guys, I think with all the good news, the question kinda got lost :D. What did they tell you guys about possible recurences and chances of future problems after surgery? Thank yall so much for all the support. You guys are the best ;;D

Oh yeah, and just a little more info, my mom had previously had a "low blood pressure" stroke when she was about 24 because she had to have a historectomy and the docs left a bleeder in her abdomen and she bled out(she lost 6 pints of blood) and, acording to what my dad said the other day, she was later diagnosed with TIAs but the docs said not to worry about it she would be fine. I new about the low bp stroke, but the tias were news to me. I can't help but wonder if the tias were the mm, and if so, why did they not see it on the mris. Talk to yall soon.                Nikki

I havent had my surgery yet.  I see Dr Steinberg tomarrow for my preop and will address some of your questions to him.  As far as I know though, moyamoya will not show up on an MRI.  My MRI's were unremarkable.  It wasn't untill I had an MRA that the doctors knew something was wrong.  I will post what Dr. S tells me tomarrow.  Hope this helps.

David,  Thanks so much !That would be great. Good luck and I will talk to you soon. ;)                  Nikki

I would like to add that I think that David is correct.....My initial MRI in May 2003 just showed an abnormality that the radiologists and neurologists could not really explain.......the radiologists report actually said that I could have a problem with cocaine abuse.....NO WAY!!!......and then they said that I might have cerebral vasculitis,( an inflammation of a major artery in the the brain and also an auto immune disorder)...so they called in the rhematologists.......the neurologists were not sure what to do....so they ordered an angiogram.....good move....but the radiologists took an insuffiecient number of pictures...and then the misdiagnosis of cerebral vascultis continued........my neurologist said that he wanted me to to go NY Presbyterian....but he didn't make the call....I had to make all the calls and they couldn't see me for 8 weeks.....so I ended up at Westchester Medical Center and they did not do an independent angiogram...only Ct scans and MRI again......and the Head of Neurology confirmed the diagnosis of cerebral vasculitis....I was put on massive doses of steroids (prednisone--80mg per day) and sent home.....I developed steroid induced psychosis (paranoia, depression, extreme anxiety, agoraphobia, suicidal ideations, etc.)  It was the most horrible experience of my life......I had to see several psychiatrists who kept putting me on anti-depressants and the combination of all of the chemicals, including the prednisone. in my body made me sicker than I have ever been......anyway, thank God I got to NY Presbyterian in late August, 2003, and found the wonderful Dr. Sacco and Dr. Connolly who have literally saved my life......I just want to underscore the need for a QUALIFIED radiologist to perfom the angiogram and the fact that the MRI usually just shows the # of strokes...but, often can show absolutely nothing useful....PatM [smiley=huh.gif] [smiley=huh.gif]

My MRI showed abnormality and vascular problems.  That was when my doc sent me to a neurologist.  When I came back to my PCP he had never even heard of MM.  Anyway, the second MRI I had - at the Univ. of Pennsylvania - was when they first thought it was MM.  And then, of course, I had the angiogram.  

-Shari

Nikki,
          You should she if they can get your mom an MRA thats a good test for diagnosing of course along with the angio . I know she's already had 2 of those, remember I mentioned the MRA on the phone but if she ends up going to Steinberg he may just do one of his own. I forgot she's alraedy in rehab. Talk to ya soon. Let us know what DR.S. says about the films. I'm axiously waiting.
               Nancy

Hey Nikki.  I hope everything is ok with your mom.  Dr. Steinberg is great.  He said so far they have had no problem with recurrence.  The prognosis is very good after surgery.  As far as TIA's go I think that is kind of case by case.  I have herd some people say they had TIA's after surgery and some say they did not.  Steinberg said the risk involved in the surgery are minimal.  I met Tara today.  She is a 17 year old that had the surgery about 2 weeks or so ago and she look really great.  It sounds like the results are great and the risks are low.  At least comparitively.  Hope this helps.  I have my surgery tomarrow.  My wife will post when I get out.  Your mom will be in our thoughts and prayers.

David Farthing

Hey!Thanx David! ;;D That really does help alot. Momma is doing very well and is in rehab. Best of luck with your surgery. You will do great!! [smiley=thumb.gif] I look forward to reading your wifes post about how wonderful you did. You will be in my thoughts and prayers as well. Thanx agian,              Nikki