Greg,

I'm not in the area, but wanted to give my support. The surgery is different for everyone, but it's the only way that I know of preventing a major stroke with MM. I know my son had the Cerebral Angiogram for a definate diagnosis. By my understanding it's the only test that shows the "Puff of Smoke" caused by MM.

I will keep you in my prayers. Sorry this had to happen to you on your birthday, my son had his stroke on Christmas break in 2002.

Rena

Unfortunately, it is a PPO that has not at all been helpful. So far they have forced me to see everyone out of network, as they claim that they do not have any MM specialist in network. I am now working with my HR group at work to better understand the insurance policy. 

Greg-NJ1 wrote on May 11^th, 2005 at 8:48pm:

Hi Greg,

Welcome to our MM family, and Happy Birthday! To answer some of your questions, here’s my opinion.

1) To start with, the most important factor in treating moyamoya disease, I believe, is having a doctor with experience, a mm specialist, but unfortunately they are far and few in between. You can seek a second opinion/diagnosis from a mm specialist right here, all info needed to do so is here on the website, under "Links" You simply send them a copy of your films. The best, I believe, is Dr Steinberg from Stanford. His credentials speak for themselves.

2) For more info on the the diagnostic testing procedures, it’s right here on the website: http://www.moyamoya.com/cgi-bin/yabb/YaBB.cgi?board=news;action=display;num=1086889571

3) It’s very common to find conflicting diagnosis/prognosis. That’s why we emphasize a mm specialist. One who knows not only how to do the surgeries recommended for the treatment of mm, but one who knows MM, the disease itself, and the correct surgery for your personal situation. One who knows from experience because they deal with it on a daily basis and knows the devastating possibilities of waiting, as many others in the medical community with less experience, do not. The consequenses are devastating. This is a progressive disease over time, with a possibility of a stroke, and I always suggest a mm specialist to prevent what happened to my niece.

4) It’s different for each person because of the many different clinical factors of each person, but I’ve heard people say they’ve had dentistry work far worse, as far as pain goes, and again, another reason we emphasize a mm specialist. DJ was sitting up in intensive care, putting together this website, the same day after surgery, for one example.

My best advice to you Greg is to read all you can about mm. The answers are there, the more you learn about the disease. You’ll find it comforting knowing you’re making the right decisions in a medical world that does not know enough about this disease.

Good luck with your insurance Company. With this disease being rare, many have fought and won, but again, I urge you to do your homework. That will help you in all areas in the future with this disease.

My thoughts and prayers are with you.

Mar

Hi Greg,

Welcome to the site - I hope you stay - there is tremendous support here.  I live on Long Island and my daughter has mm (she is 14, was diagnosed at age 10).  Her doctors are at LIJ, Schneider Children's Hospital, and they strongly recommended Dr. Scott in Boston.  It could certainly be worth a phone call.  Stay positive -

Susan

An added note... I agree Dr Scott is a mm expert. I didn't mention him because it's been said that he primarily see's children and adults up to the age of 35, but never the less, an excellent doctor.

Mar

Greg,

Glad to see that you are moving quickly on this.  And it's really good that you have gotten one test out of the way and that you met with your HR department.  How did that go?  Did you gain anymore useful information? 

It sounds like you've got a great girlfriend.  That should be a fun trip to Niagara Falls. 

Just a little note.  You can have headaches without having any other symptoms.  I had headaches for a month.  I would have one everday and not experience any other symptoms while I had them.  Also, I would try to take aspirin for them when I did have them, and nothing would help them to go away.  They would usually last all day.  You might try taking some Tylenol and see if it helps your headaches.  I would get some others opinions on the boards to see if they experienced headaches and if they would go away by taking any aspirin.  As everyone here has said, everyone is different. 

Michelle

Hi Greg.  PatM is my sister.  She's the one TomG mentioned as having had two surgeries performed by Dr. Connolly at Columbia Prebysterian.  Getting a second opinion is great.  I can't remember the name of the doctor who, along with Dr. Connolly, figured out that my sister has moyamoya and not the cerebral vasculitis she had initially been diagnosed as having.  The intense steroid treatments for that nearly killed her and have done permanent damage (on top of what moyamoya does to a person).

Diane