My cousin Bridget was diagnosed yesterday with Moyamoya Disease. She was taken into the hospital Monday with a massive stroke. Amazingly she was still able to talk and drive when she went in to work Monday morning, though her speech was slurred (which was the cause for concern)

The doctors tell us that there's nothing that can be done for her and the disease is too far along. Her one artery is completley blocked and the other is mostly blocked.

I'd been reading there are bypasses and the prognosis is fairly good and I can't understand why we're told nothing can be done. She's currently at a hospital in New Jersey (I'm writing this from Austin, TX so I can't speak to the doctors myself, but she has her immediate family there)

She's right at your age DJ. How far along were you? How can I reach Stanford's Dr. Steinberg who I've seen so much info on about this disease? Where can my cousin turn to? The doctors are even thinking of sending her home to more or less finish out her life, so time is obviously of the essence.

Please, if anyone knows anything please help. I can be reached by e-mail at littleletterman@hotmail.com or bobbydipasquale@hotmail.com

Thanks everyone for your help.

-Bobby DiPasquale

Bobby,

My heart go out to your cousin, her doctor said not thing they can do because they didn't know much about this disease, I had my arteries blocked at 100% on left side and 80% in right side, and I have 2 surgeries and survise, so don't believe that doctor.
I know it is scary for everybody in the family when you hear the new but it will be ok.
You can contact with doctor Steinberg with Linda information, or my doctor- dr. Tamargo at Johns Hopkin hos. at Baltimore, Maryland. 

His contact information though email is tracey@jhmi.edu and the phone number is (410) 614-1533.

Take care and keep us post.

Kieu

Hi Bobby,

Please have your family contact this doctor at Roosevelt Hospital in NYC - http://www.drdavidlanger.com/
We were told that there was no hope for my daughter by the local drs here in Charlotte, NC but he operated on her two year ago and saved her life. She is doing wonderful now.
   
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I agree with the others, get her information to Dr Steinberg.  My daughter had her first surgery in April and did wonderful.  We return in Oct for follow-up and possible surgery on the other side.  The people there are great, they are always there for you.  Good luck and my prayers are with you and your family.

Margaret

Hi there....Just chiming in too!

I was 100% blocked on both rt and left coratids! A neurosurgeon in Cleveland University Hospital wanted to do a "wait and see" approach with me for 6 months. I then asked "can you guarantee I won't stroke during that time?" He then worried and said..."OK lets ....surgically do one side and then....wait on the other! My husband (also a physican) and I wrote him off the short list immediately and I went to Dr Steinburg in
Stanford University, California and successfully completed both surgeries in Aug 2006.
BTW: Cleveland Clinic was in total agreement with Dr Steinburg and wanted to quickly do both MCA-STA bypass's but did not have the surgical experience background as Dr Steinburg did.....so I choose the Dr with significantly higher expertise with MM.
My surgeries went seamlessly....It was a great choice for me and the whole staff was just amazing!

I know this is a scary time for you and your family.....if you wish to speak privately.....you can email me at
dianekhatib@hotmail.com

best regards......diane

Here's the update on Bridget. As of right now, the doctors she has in New Jersey are telling us the arteries are clogged up very badly. 1 is completely cloged and the one that isn't is clogging all the way to the eye. They feel her veins are to fragile for surgery and are currently saying it isn't an option.

Still, we aren't giving up hope. We're getting the immediate family info to get in touch w/ Dr. Steinberg to see if there's anything he and his staff can do. At least if there isn't, we'd like to know from the best.

She's on blood thinners at the moment and hydrating constantly in hopes to do the burr hole surgery. She's also seeing another doctor in New York soon for yet another opinion, but I'm not sure his/her name.

I will keep you all posted. Thanks for your prayers and your help.

- Bobby

Hi Everyone,

I'm so sorry it's taken weeks to get back to you all. I wanted to give you an update on my cousin Bridget.

I'm not sure where I left you all off with, so please bear with me as I run you through where we are now.

First, a really cool story concerning this site. Apparently a friend of a relative happened to be talking about Bridget's case while at work shortly after her diagnosis. Amazingly, one of the people he was talking to was a past survivor of MM. She had read my post and the 2 got to talking. I'm terribly sorry for not remembering her name, but she's been such a help to our whole extended family.

She spoke with a few of my aunts, including Bridget's mom, and helped to inform them on her first-hand experience as well as help to guide the family on where to go (as all of you have on here.)

My family is a spiritual one and believes it's the work of the Higher Power (God) that had that random conversation in an office happen.

From there Bridget has gone on to see a few doctors. She went to Columbia U. Hospital in New York. They felt the blood thinner medication given to her was doing an effective job and wanted to continue her on it in hopes of eventually doing surgery. This we thoguht was good news (as New Jersey told us, there was no hope even for surgery.)

Still, our family pressed to make sure we got every opinion possible so Bridget's records were sent to Stanford and Dr. Steinberg and his team.

After looking at her records, they decided surgery as quick as possible was the best option as the disease was progressing down toward her neck.

Her surgeries are scheduled for the last 2 weeks in September. The first will be done on one side and the 2nd on the other. She will be heading to Stanford soon to complete other tests before the surgery too.

We know there's still a great danger involved, especially w/ any kind of a surgery and we do know Bridget's disease was caught later than anyone would like, but we have a lot of hope.

And a main reason we have that hope is because of you all here at the MM site. By reading, responding, and sharing her story you may have helped to save a life.

It may not seem like much, but our family is so thankful for this site and for all of you. You guys who've had the disease are survivors. Those who haven't, but are also part of this site are also heroes and life savers too and I don't say that with passing praise. Each of you should take it to heart that you are touching lives of those you have never met.

I will try to keep you all better posted on updates (though I don't know how much more will come before the surgeries.) I'm sorry again for not responding quicker as things have been very hectic at the moment, but thank you all for keeping Bridget in you thoguhts.

I have talked to Bridget just before her 1st surgery....and now 3 weeks post her 2nd surgery. Aside from a few minor issues.....she is doing fantastic and in great spirits!

In my opinion.....she has MADE IT....and no looking back!

Thank God another MM'er with a second chance for a healthy life! She and those to come, are the inspiration and motivation to keep this site going strong!

Smiles...Diane : )