I agree.  I was hoping that more would have been shown - especially with Dr. Steinberg.  It was a good chance reach a lot of people and I don't think they really did that with this piece.  Don't get me wrong.  I think any exposure helps, but I also felt her statement about a cure is extremely misleading (I was talking back to the TV when she said it - what??? There's not a cure!!!)  I think it's really important for people to be informed about their own health and having that statement out there as if it is fact is disturbing to me.

Hi ya Apu,

Well, I for one sure was tickled to see the main man, Dr. Steinberg. No better person in the world to be first to air information about moyamoya on a primetime major network!! For that reason alone it was outstanding, IMO.

If just one young girl or boy saw the show and says, "hey, my hand gets numb and maybe it shouldn’t be fluffed off just because I’m young. (Like in Mandy’s case) Well, we couldn’t ask for more really. It’s what we hoped and prayed for and what it’s all about. I’m so tickled I can’t stand it. It’s getting out there slowly but surely.

I did however get a few calls asking if Mandy was cured and I had to say that wasn’t the case, but it’s a start. They’re talking about moyamoya on primetime TV, so I’m thrilled.

Mar

Moira:

I don't think I'm disagreeing with you or Mar.  I think we're in agreement, we're just saying things differently.  

I absolutely agree with Mar that some awareness is better than nothing.  I was thrilled to see Dr. Steinberg on TV.  And thrilled that right after this show, there were about 25 guests on this website.  So obviously it helped a lot!

In addition, I don't live my life, nor do I feel anyone should live their life thinking they are going to die tomorrow, or worrying about a stroke.  I don't think I said or indicated as such.  Believe me, after what I've been through, it's the last thing that concerns me these days.  

I'm simply saying that the segment was a bit misleading regarding cures.  There is no cure for this disease (YET!).  I would hate for anyone to have false hope.  I've battled even my family since my surgeries because they don't know why I get so tired still, why I get the occasional TIA, why I have headaches once in awhile.  They thought I was 'cured'.  Some may not have those symptoms, as we know all of us with moyamoya are different, but I think this is still valid for many patients, even post-surgery.  

That being said, I am so happy for you that you are living your life exactly how you want to.  We should all be so fortunate (once I quit this job and get that business going, I'll be there hopefully!   ).  

Hugs,
Trina

(Mar, glad to see you posting after so long!  Was wondering what happened to ya!  Apu)

Hello All -- New member here.  I do not have the symptoms of Moyamoya Syndrome but I believe my Mother does.     One of my good friends saw the Prime Time episode last night over Moyamoya and called me to tell me about it.  I missed the program, but started researching it as soon as I got to work this morning.  And thats how I got here. 

  Mom recently has been having a numbness in her right hand, and sometimes it even crawls up her arm and her entire arm is numb.  Then a really bad headache follows.  Also when she is having these episodes she cant communicate and its very hard for her to talk.  She has found its best to just go to bed when this happens.  Also, not during her episodes, but almost all the time, one of her eyes is very bloodshot. 

     The first time this happened we took her to the hospital and she stayed there for a week.  Test after test was ran and nothing was ever found to be "wrong" with her. 

     So anyways I guess the reason for my posting is that the very small clip on PrimeTime has done some good, because I know she will be talking to her Doctor about this Syndrome very soon! 

     Also I would like some feedback on her eyes being bloodshot -- is this something that happens with this syndrome as well, or should we not be worried about it?   Any help is so appreciated!! 

Thanks

Matt

  First of all Matt that's fantastic that this has lead you to research this disease.This is a wonderful group here and will certainly help you  in this journey.That's exactly what getting the word out is all about. That being said I have to agree with some you who were bothered by the FALSE statement that there is a cure.I Cringed when she said she was CURED! IN fact she said it twice! But that's just my 2 cents and it comes from the fustration In trying to explain to people for the past 5 yrs especially those who are with Kathleen everyday at school, that she isn't cured. She has been successfully treated but the moyamoya is still there.Kathleen hasn't had any strokes since surgery but she does have good days and not so good days.She gets exhausted very easily,and it affects her work at school sometimes.She still needs to take precautions that they need to be aware, and she will takes asprin for the rest of her life.If it was cured she wouldn't need to do all this and we wouldn't need to watch for any signs of strokes TIA's or seizures.We try not to dwell on the fact that she isn't cured BUT that IS the fact and I hope it doesn't cause confusion for others too.Don't these shows check to be sure what they are airing when it comes to medial issues that they are only representing the FACTS? I'm rather surprised.
Mary Grace

I, too, am thrilled that this aired last night and on national television.  However, I was a little miffed that they had to cut the show down to a half an hour to accomodate the president.     After watching the show, I felt like they left out so much!  But that's what happens when you get down to editing these shows for length purposes. 

As far as the incorrect statement, well...she said it and it's out there.  Now it's up to us and the doctors to help set the facts straight.  I can't tell you how many articles I've read about the disease where false statements were made. 

I'm going to see if I can get a tape or copy of the full episode.  I'm almost positive this was originally an hour program and they would have to have the full hour of it still.  I'll let you all know what I come up with. 

Michelle

PS....Matt - I'm glad that you found us and I hope that you are able to get some answers.  Welcome to our family and please don't hesitate to ask any questions.  Unfortunately, I've never heard of people having bloodshot eyes from this disease, but then I'm not a doctor and it certainly wouldn't be unheard of.  Each person is different in how they experience symptoms with moyamoya.  Good luck to you and your mom.

Ditto Trina and Shari for me.  Mar, I, too, am glad that anything is shown about MM to gain awareness for this disease.  Nevertheless, I am sorry that the "cured" misinformation was included.  I had a number of calls last night and this morning from friends and relatives asking if Kate was completely cured now.  After experiencing two TIA's since surgery, we cannot let go of our diligence in taking care of ourselves and watching out for this disease.  

Kate certainly is living her life to the fullest a day at a time, but she knows if she forgets to stay hydrated, gets stressed or exhausted, for example, she will pay a price.  Doesn't keep her from having fun, though.

The other major stations ran programs delayed but complete last night.  Why did ABC cut Primetime short by nearly 30 minutes, rather than delaying the news?  This is really too bad.

Nevertheless, I thought it was great that 39% of the people that voted on what they thought was wrong with Jennifer said "stroke."  At least this hopefully means that more people are becoming aware, do you think?

Cass and Kate in Dallas

Yes, it's good news to hear that others will find out about the disease and maybe come to conclusion about what's going on. 

As for me, I'm still far from cured and this time I hope my surgeon listens when I need to talk.  Otherwise, I'm calling Stanford and going down there.

Hi Matt,

Glad to hear your mother has an appointment with a Neurologist - very soon.

Keep in mind that you can send your mother's films to Dr. Steinberg at Stanford.  He is considered the leading MoyaMoya specialist in the United States and he will render an opinion at no cost. His information is on the board in several places including the front page via the Stanford Link and under surgeons with MoyaMoya experience.

Being misdiagnosed and/or undiagnosed can be frustrating not to mention the probability of devastating consequences if MoyaMoya is the true culprit and not acknowledged or treated properly and in a timely fashion simply because the disease is progressive and requires surgery to put the patient on a level playing ground.

My brother Cubbie has MoyaMoya and went misdiagnosed for four years. He had two strokes and a dissected upper carotid artery, TIA's and a hemmorrage.  It wasn't until we found this site and Dr. Steinberg that Cubbie received a confirmed diagnosis of MoyaMoya and had two direct bypasses (STA-MCA) at Stanford by Dr. Steinberg in May of 2005.  What a difference! I am still in awe of it all and only wish we had found Dr. Steinberg sooner.

Today, Kevin is doing well given all he has endured. I share this with you mainly because it is so very important to have a doctor who is familiar with MoyaMoya. They know what to look for and can determine the proper treatment in a timely fashion. Kevin may very well have been spared multiple strokes, multiple TIA's etc had he been diagnosed properly early on. Even when Kevin's local doctor, who perfomred an angiogram and had performed over 15,000 angiograms, saw the collateral vessels (puff of smoke) said he had never seen anything like it and had no idea what it was.

My intent is not to scare you with all this information but rather, to spare you and your mother from all that can come from being misdiagnosed or undiagnosed and especially if it is confirmed your mother has MoyaMoya.

Please know that we are here for you and your mother and please ask any questions. This is a great group of people who have been down this road one way or another and are very helpful and knowledgeable.

Please keep us posted on your mother's neurological visit.

Hugs,

Lore

I feel the same way I'm glad its out on national T.V. but wish it was in it was fully shown and that she didn't say she was cured. I don't remember did they lead you to believe everyone is just fine afterwords, meaning after the strokes not the surgery? (Or both actually) I was drifting off during the late showing I was up at 4:00 a.m. for work. Thats what I would be upset about.
                                          Nancy

Hello everyone,
  I also had mixed feelings about the show.I wish it hadn't been cut short but it was a great feeling seeing something about it on TV.To think in early 2005,I had never even heard of this disease and now we are seeing it on national tv.I too was shocked when I heard her say that surgery was a cure but at the same time,I can understand.There are so many misconceptions about MM.I agree with Jill.I couldn't imagine letting strangers film us when Paige went through either of her surgeries.There were so many mixed emotions that we felt and the anxiety was terrible.I really admire them for being able to do what they did to help others.Thank you.
About the show,hopefully ABC will decide to reair the full show.

Jennifer(mom to Paige)

   I thought it was a bit misleading.  It certainly is a rare condition.  How would anyone guess the diagnosis.  But you have to start somewhere.  And as is the case with anything that is rare and not thoroughly understood it takes time.  Although, I have to give the media credit for giving MM some airtime.  They too probably don't really understand the extent of MM.  You can only understand it if you are close to it.  As time goes by it will be recognized and understood more and more.
  But no one better than Dr. Steinberg to do the interview.

Ron