Ha,

I don't have any advice on the financial situation. But as far as your doctors: Have you asked them how many patients they have had with Moyamoya? My son's neurologist was the best in the area, yet had never seen a case of MM and even said he didn't understand why the raidiologist tech thought Tyler had MM.

As you will read on here, many good doctors have told patients to wait for surgery. Some people waited to only have devastating strokes, others sought out second opinions and got help before a surgery. MM is still a very unknow disease/disorder to many neurologist and neurosurgeon. Their great experience in their field doesn't tell anything about their experience with MM.

Maybe you can give this site address to your doctors and ask them about what is presented here. This site is based on actual experience with MM. We don't have degrees and we only share our stories, but we do it to help people like yourself to have a happy story to share.

I will keep you in my prayers, Rena

Thank you very much Jill and Rena. I'll keep posting my latest new. God bless all MMers.

Ha

Thank you too ,Mar for your niece's experience and kind advice. I understand that I need to take surgeries asap. Now the only question is who and where. May I ask how long did your niece have surgery after discovering her mm?

I also have a new and maybe BIG question now: I went through a SPEC scan test with Diamox this morning. The radiologist has just informed me that the test was OK and they didn't find any thing abnormal in my brain and that I don't have to take another test without Diamox.

While I am waiting to hear from my neurologist by tomorrow and while my neurosurgeon is still abroad, I am very excited to  hear from your experience with the  SPECT  tests. DJ, I saw the pictures of your SPECT scans. I don't know how different mine is but from what the radiologist told me, does it mean I have less or no risk at all?

Thanks,

Ha

Hello Ha,
  We are so sad to hear you have been diagnosed with moyamoya.  But we are very very glad that you have found DJs website.  It sounds as though you are about my sons age.  He has gone through the operations with Dr. Steinberg and is doing very well.  You have already been given the best advice and have heard straight from the experts at Stanford.  I hope you can get care at Stanford.  Ask all the questions you can think of.  Be persistent with your insurance company.  This is nothing that money should stand in the way of.
  Sounds as if none of your family is here in the states.  You have found a different type of family here and we will help you as much as we can.  Any way we can help just ask.
                                     Ron

Thank you very much Mar, Ron, Christi and everybody for sharing with me. I couldn't get out of my bed for 12 hours, tired and headaches, maybe because of the effect of SPEC scan and Diamox.

I live by myself in the States but these days, my classmates, friends, and faculty have encouraged me and helped me to seek insurance information and give me many advice. Especially since I found DJ's website and got your kind replies, I feel like having a second family of people that are understanding, having the same situation and same feelings. Thanks again.

Ha

I wanted to share with you this recent Japanese study. Not everybody go fast downhill with MM!


No Shinkei Geka. 2005 Apr;33(4):337-42.

[Clinical features and outcomes in patients with asymptomatic moyamoya disease--from the results of nation-wide questionnaire survey]

[Article in Japanese]

Yamada M, Fujii K, Fukui M.

Department of Neurosurgery, Kitasato University School of Medicine, Sagamihara-city, Kanagawa, Japan. yamadam@med.kitasato-u.ac.jp

After induction of noninvasive diagnostic tools, asymptomatic moyamoya disease is occasionally being diagnosed. However, there is no epidemiological or clinical data concerning this condition because of its rarity. To elucidate clinical features and outcomes in patients with asymptomatic moyamoya disease we conducted a nation-wide questionnaire survey. Questionnaires were sent to 88 neurosurgical institutes in 1994 and we received answers from 66 institutions (75% recovery). Diagnosis of moyamoya disease is based on the guidelines established by the research committee on moyamoya disease of the Ministry of Health and Welfare, Japan. Thirty three asymptomatic moyamoya disease patients were collected (11 male, 22 female) and divided into 2 groups; group 1 defined as patients without any symptoms, and group 2 as patients who did not show any symptoms except headache. 80% of group 1 patients were adults, whereas in group 2, children and adults were equally distributed. Follow-up periods were 3 years and 8 months on average. Among conservatively treated 28 patients, 2 patients died from suspected bleeding (mortality 7%) and 4 patients with TIAs resulted in good outcome. Among surgically treated 5 patients, 1 patient showed poor outcome due to post-operative infarction. Other 26 patients showed excellent outcome. Natural course of asymptomatic moyamoya disease seemed benign, but mortality from bleeding is not negligible. A prospective study of asymptomatic moyamoya disease is necessary to clarify its natural course and appropriate management strategy.

That's an interesting discussion. Please keep going on so that I and other people can learn more from different perspectives that help us to make better decisions.

Thanks a lot to Chelsie for sharing your very similar experience. You give me more couragement.

All the best.

Ha

ha wrote on Apr 30^th, 2005 at 9:53pm:

Hi Ha,

Sure, mm is different in each person, because each individual has different factors involved. BUT mm, the disease is not different in that, you are never free from the risk of a stroke if you do not have the proper blood flow and oxygen to the brain.

In short, the facts as I know them are: IF properly diagnosed with moyamoya disease, EVERY PERSON has PROGRESSIVE narrowing of the brain blood vessels.

It’s a fact that surgery is suggested for restoration of blood supply to the brain.

It’s a fact that the mm vessels are abnormal and weak, and often at risk for hemorrhage. (Meaning risk of stroke or death) These things are never different. They are facts.

Yes, some people with mm disease are at higher risk for stroke then others, and for many different reasons. Perhaps someone’s blood pressure may differ and be a factor. For some, mm progresses faster than another’s. Some people have neurological dysfunction from prior strokes. Others have additional medical conditions or take different medications, etc… so many reasons why mm is different with each person, but never the less, the risk of a stroke is still there if you have mm disease and that's why I feel it’s the important issue. Unfortunately, there are no medications that prevent the arterial narrowing process from progressing or keep the moyamoya vessels from developing.

I wish I knew of more studies and research to be able to say it’s ok to wait, but all I’ve ever known to date was the many people who were told to wait and had devastating outcomes. Yes, there are mm members here who have been told by reputable neurosurgeons that they did not need surgery because they have sufficient blood flow and they’re asymptomatic, but what I don’t understand is, they’ve had severe strokes. So my point is, why the debilitating stroke, if there is proper blood flow??

Here’s how I look at it Ha… Moyamoya is a progressive disease, right? Even if you’re asymptomatic, you’re still at risk for a stroke, and 2 out of 3 doctors suggest surgery to prevent a damaging stroke. So, all I can say is, weigh the facts; they speak for themselves in my opinion. I would ask questions and learn all you can about mm the disease. I think the answers you need will come without a doubt.

As far as risks with surgery…  naturally that's always a concern with any surgery, but again, that’s why we emphasize an experienced mm expert. Not just a neurosurgeon who has done, or can do the surgery, but an expert on mm, the disease. The credentials and experience speak for themselves, and that’s comforting when faced with a decision like brain surgery.

I'm sorry for the length of this post. I'm just so concerned and have so much inside I'd like to say. Please know you’re in my thoughts and prayers. Keep us posted.

Mar

Mar, thankyou for that post.  Absolutely WONDERFULLY put in my opinion!

Ha, just like I posted to ggonzo in another thread when sh said her husband's doctors told her he had good collateral flow around his blockages.  Yes, collateral flow does a decent job of making up for blockages to start with.  However, over time, collateral flow cannot supply all of the brain's needs for oxygen.

We talk a lot about doctors who specialize in the treatment of moyamoya disease on this site because we know these doctors understand that good collateral bloodflow is a plus, at some point, it will not be enough.

These doctors are probably more aggressive suggesting surgery to correct the bloodflow problem, but I think they do so because they better understand what the furture can hold and they would like to see the problem corrected before serious or permanent damage is suffered.

True, collateral flow may be enough to handle a person's needs at the moment, but who's to know the exact time it won't be enough and damage occurs?  It's exactly like knowing the transmission is going out in your car and doing nothing about it.  At some point, your transmission is going to break and leave you stranded.  Why not get it fixed BEFORE it breaks completely and you get left stranded on the side of the road?

I mean no disrespect to any other neurologist or neurosurgeon when I say... when it comes to the treatment of moyamoya disease, I would bet my life on Dr. Steinberg's opinion.  In fact, I already have, personally... TWICE.

DJ

Dear Ha,
I was diagnosed with MM on the day of my identical twin sister's 1st sugery with Dr. James Rose in Houston, Texas. I was so sure that I didn't have it because I had absolutely NO symptoms at all. When Dr. Mawad said I had MM I was stunned!! That was in June 2004. By November out of the blue I had my 1st TIA. In January I had my 2nd. I, too, was told I had a great set of collaterals. It was what saved my life. Only thing is, they don't do the job forever. Those collaterals are helping you right now....so please do something to help them out !! My 1st Neurosugeon said, "Don't fix what ain't broken!" I thank God I listened to Dr. Mawad and Dr. Rose (MM specialists) and had my surgery. My next one is on May 9th. There is no doubt in my mind that it is the right thing to do!! Good LucK with your decision....trust your instincts!!!                  laura twin a

Thank you so much everyone. You responses did help me A LOT during the very hard time.

Just to let everybody know that I will fly to San Jose on May 15, after my graduation date on May 13 . I will go to Stanford to have a Xenon test on May 23. I will see Dr. Steinberg after TCD test on May 24, and will have the surgery on May 25. I will stay in the area for a few weeks after operation. I hope to see some of you there. I'll keep you update with my surgery.

Thanks again.

Ha

Welcome Ha. If your doctor is professional enough, I'd imagine he would understand your worries on wanting to switch to a doctor with more MM experience. Experience means alot. With my situation I was misdiagnosed after my first stroke by a doctor because he had no MM experience  and I was given the wrong treatment, which led to another stroke.    best of luck to you Ha.