hi everyone

i was just diagnosed Jan. 6th with MM. i came upon this website and message board about a month ago, and it has answered a lot of my questions. thank you. i'm sure you all know how i feel, pretty scared and unsure about everything going on right now. i am under KAISER's care- i live in los angeles, CA- does anyone else have KAISER and do you know anyone at KAISER who has MM expertise??? I've been jerked around for about a year and i finally got a golden KAISER referral out to UCLA where i got to see Dr. Liebeskind, and Dr. Sanossian- the problem is that i only got a one time referral- next step is to get KAISER to refer me to them again, and also an appt. with Dr. Neil Martin- who i've seen some of you like... i feel better under their care now- compared to KAISER who had hardly "heard of" moyamoya. Just hope i can get more referrals.

or maybe i just haven't heard of any good KAISER doctors who know about MM?

thanks again for this message board- i feel better now that i know what is wrong with me, it is helping me stay a little more positive- instead of thinking i am going to die each day. i have not had a stroke (yet?)- and no surgeries- puff of smoke is not visable on my angiography films- is anyone else similar to me?

sorry so long! i'll keep it shorter next time. advice would be appreciated! thanks again.

Shanna

Hi Shanna [smiley=wave.gif] Sorry to hear about your diagnoses but I am awfully happy you found this site for the support here is like no other  [smiley=hug.gif].  I am sortof in your situation as I was just diagnosed in October 2004 after having a small stroke in September, it wasn't all that long ago but it feels like an eternity because of the trouble I am facing with these darn insurance companies [smiley=mad.gif]!  I live in Missouri so I can not help you out with your question about Kaiser except to say that maybe you could get your primary care physician to write a letter of medical necessitty (sp?) to your insurance company and that may get the ball rolling in your favor?  If there is no 'puff of smoke' showing up in the angio maybe you were diagnosed at an early stage?  If that is the case you may not need surgery yet?  I am only assuming but I am sure that others in this web site are extremely more knowledgeable about this than me.  Good luck and please keep us informed.
Kathleen

Hi Shanna,

I would suggest you do all you can to get to Dr. Martin at UCLA.  He has more experience with MM in southern California than anyone else and should be able to help you out.

There have been a couple of people from this site with Kaiser, one in particular who has already had surgery, but it was in northern California.  If you would like to email me or send me a private message, I will send you the information on the Kaiser docs up north.

Also, I'm curious as to why your doctors reached a diagnoses of moyamoya without seeing the "puff of smoke" in your angiogram.  The angiographic "puff of smoke" is THE tell-tale sign of moyamoya and where the name came from.  If it isn't there, I wonder what they are basing there diagnoses on?

Please don't take my curiosity the wrong way... I would just hate for you to spend all of the energy working with a moyamoya diagnoses and seeking treatment for it if it's not truly what you have.  I am not a doctor, but from everything I've learned about moyamoya in the last four years, the "puff of smoke" goes hand in hand with MM.

You might consider sending your films to someone with more experience with MM such as Dr. Martin or Dr. Steinberg for a second opinion on your diagnoses.

Just my opinion...

I hope everything works out and please keep us informed of your progress.

DJ

Shanna,

Again, please don't take my suggestions the wrong way.  I sincerely am not trying to destroy your sense of being "positive" by having a positive diagnoses.

I just want to ensure you have been given the proper, and most informed diagnoses.  Although I have no idea what your symptoms are and what tests you've had already, but it may do you more harm than good if you seek treatment for MM if it isn't MM that is causing your problems!  It would be like being treated for cancer simply because you have a headache...

The more I think about it, the more it bothers me NOT to say what is running through my head.  My concern is you've been diagnosed with moyamoya without the moyamoya vessels showing up on your angiogram.  The "puff of smoke" is the cornerstone of being diagnosed with this disease.

As I said before, I am not a doctor, but I've learned a lot about MM in the last few years.  Here are a few of the statements I base my comments on:

Moyamoya disease is a rare, progressive cerebrovascular disorder characterized by the narrowing or occlusion of major blood vessels leading into the brain, and the formation of abnormal blood vessels called moyamoya vessels.

The name "moyamoya" is Japanese for "cloud of smoke" and was chosen to describe the classic appearance of the abnormal vessels seen in diagnostic tests.

The disease derives its peculiar name from the angiographic appearance of cerebral vessels in the disease that resembles a ‘puff of smoke’.

Once a diagnosis is suspected by CT or MRI, the next step is usually an angiogram to confirm the diagnosis and to see the anatomy of the vessels involved.

My concern for you is that your doctors have given you the diagnoses of MM because they can't figure out how else to diagnose your problems and are pawning it off on MM.  If you don't have the "puff of smoke" from the collateral vessels in your angiogram, chances are, you don't suffer from MM!

There are other medical conditions that are similar to MM which the medical page from Harvard Medical School refers to:

Moyamoya type changes have been found in a variety of diseases, including sickle-cell disease, neurofibromatosis, trisomy 21 and fibromuscular dysplasia. Other predisposing conditions for this problem include an auto immune process, cranial trauma, anaerobic bacteria or the use of oral contraceptive but none has been convincing.

Like I said before, I don't know what your symptoms are, but I would hate for you to "take your doctors word for it" when THE major diagnostic signature doesn't present itself in your angiogram...

I would again, strongly suggest seeking a second opinion from a specialist on moyamoya disease such as Dr. Steinberg, or at least someone with more experience with MM such as Dr. Martin.

Again, just my humble opinion...  Take it for what it's worth...

:-/

Hi Shanna -

First of all, DJ gave you great advice!  

Dr. Liebeskind was the one that diagnosed me when he was at the Hosp. of the Univeristy of Pennsylvania.  At the time, he advised me to go to a specialist out of state to consult on my surgery.  I did.  I went to Boston to see Dr. Scott.  Dr. Scott had me scheduled for surgery within the month.  Dr. Liebeskind also mentioned Dr. Steinberg.  The point is, it is imperative that you go to someone that knows extensively about MM.  Like DJ said, you want to have a definitive diagnosis before you seek further treatment.

I wish you all the luck in dealing with your insurance company.  And with your diagnosis.  Remember we are here to support you and to try to answer any questions.  Good luck and keep us informed!

-Shari

Thanks to everyone for all of the support and advice you've given me.
Sorry its taken me so long to reply-

I am also concerned with the diagnosis- however, i am definetly seeking out more opinions... "they say" i am in the early stages and have moyamoya syndrome...which usually turns into the disease...perhaps that is when the "puff of smoke" comes up?

i wonder if anyone else has been told this....

anyway, now i am being referred to orange county KAISER..... the neurosurgeon is Dr. Mark Vanefsky. Know anything about him?????

thanks

Shanna wrote on Jan 15^th, 2005 at 12:12am:

"they say" i am in the early stages and have moyamoya syndrome...which usually turns into the disease...perhaps that is when the "puff of smoke" comes up?

Hi Shanna,

I can see DJ’s concern and must say I understand it and agree with his point. Even if you are in an early stage of mm, whether it be called mm syndrome or disease, the fact is, there must be abnormal blood vessels, which IS the "puff of smoke" on the angio, to be diagnosed with moyamoya, no matter what stage or degree of blockage. That is what mm is, “Puff of smoke”. That’s why it’s so puzzling. In other words... you are being diagnosed with a “puff of smoke", yet saying, they're not seeing the puff of smoke. That's the questionable concern. See what we mean? I too suggest sending your films to a mm specialist to get another opinion, because many doctors do not know enough obout this rare disease, but a doctor with experience with mm is one you can trust. There are diseases that are similar, in that you may have arteries narrowing, (called stenosis), yet not necessarily is it moyamoya disease. If I may speak for DJ, I think that's what his concern for you is, the correct diagnosis, as is mine.

Good luck and keep us posted.

Mar

Shanna...HI..welcome to MM. My daughter at 2.5 was told after her "stroke" (I think that is what she had...now I know some signs and information) as she had an on going left side weakness along with involuntary left side movement of her left arm which moves without her knowing.    After five days of testing...showed high blood pressure and extra artery in kidney...MRI was clear..no sign of stroke....but reading posts here I saw one kid had a stroke and they immediately did a MRI saw it on there ....few days later did another MRI on him and it was gone....made me think that could have happened to Cara as would have been little over a week since the "stroke"............long story short......MM was one possiblity for at least 3 years.  I even send her films to two other places that had experience in MM...and both said may not be MM..or a very early stage of it.....she'd go through six months being fine...then have a spell....then another six months and have a spell....each time they say...not yet.     But when they did the cerebral angiogram when she was 4...the neurosurgeon at PHX Childrens Hosp...who has done  30 MM surgeries...said she doesn't show the classic symptoms yet...but she shows the narrowing at the stems...maybe a stent could be done.   Before the angio she had the MRA which showed an abnormal artery network....her arteries ventured off rather than meet at top of her head...so that is why they said MM is possible but not yet...no puff of smoke or tiny MM arteries yet.  All through this my friend begged us to take Cara to the Mayo....so in March of 2004 she had another spell coming off the bus...I watched her closely...was fine but called her neurologist here and MRA was done..he expressed some concerned and recommended we see ..the neurosurgeon who "still" said not yet....but he would consult with the radiologist to see for sure and get back to us.  She kept doing normal stuff...of course I'm always watching her...praying nothing goes off.    Brent and I decided when school lets out end of May...we should go ahead and take her to the Mayo in Rochester as Dr Meyer said he'd be happy to do the SPECT exam and so forth.  Dr Scott wanted us to get the SPECT exam done in Phx six months ago but both the neurologist and neurosurgeon here said there was no need !!!......June of 2004 I took Cara to Rochester....she had the SPECT exam that showed her right side only little blood flow and left side about 80% blood flow...something like that....Dr. Meyer said we really needed to have a new angiogram and a new MRI when we got home.   I asked anyway you could do it here in Rochester while we are here...as Lois, my friend, who was married to Dr. Sundt before he passed on. Dr Sundt was the chief neurosurgeon at the Mayo and trained Dr. Meyer.....Lois was freaking out after hearing the spect exam results and RECOMMEND us do those exams there......we changed our flights after Dr Meyer got Cara in for the angio and MRI for the next day...then the following day after that....it confirmed that the entire right side was shut down and the blood flow they saw for the right side was coming from the left side but the left side was narrowing.  The MRI had many spots this time showing her tiny strokes over a long period.....long story short...we went ahead and scheduled her first surgery July 14....and her second one to be a month later....That is how Dr. Meyer does his surgeries.   Also said there were MM arteries and puff of smoke, too on a much clearer Mayo anigogram compared to PHX Childrens Hosp Mayo of 2002.    So we are one of those that were told "very early sign of MM"...but there are other possibilities she may have, too.   So it does make sense to go to a MM specialist as soon as you "hear" ...MoyaMoya..mentioned.   They even told us that it could be like this for another ten or so more years...but I am glad I listened to my friend and got some more opinions.    After Cara's second surgery...I got a letter in the mail from Phx Childrens Hosp....it is time for Caras annual MRA.   I told them she had the surgery recently and no need for the MRA at the point.

Will keep you in my prayers....ask us anything else...follow DJ's post which is VERY good.

CarasMOM. :)

Hello,
 My name is Lena . I also was just diagnosed with MM
recently on Jan. 14th 2005. The puff of Smoke is a keyword. The Dr. who did my Angio was showing me the pictures on the screen when he finished and showed
me a picture with the what looks like "A puff of smoke" in the brain,
besides the occlusion in the artery, and other things. But, I will never forget when he said"See this puff of smoke, what looks like a puff of smoke" It's Moyamoya disease. The next day I came to this sight. Thank goodness for this. I will be able to learn more, talk, listen
and get good tips. I hope the best for you.
 Lena

Dear Lena,

Welcome to our family!  I'm sorry to hear of your MM diagnosis, and would imagine that you're still reeling with the surprise.  On the bright side, I am very glad you found us.  This is a very supportive group - one with people who will give you honest opinions, support you through difficult times and celebrate your triumphs with you.

I am unclear as to what your treatment plans are.  Did your doctor recommend surgery?  If you've read much on this board, you've learned that the most important thing you can do for yourself is to get to a Moyamoya specialist.  There is a big difference between a doctor who recognizes the disease and a specialist who is experienced with doing MM surgeries.  I hope you will do everything in your power to see a specialist.  There are links on this board with specific information on doctors that should help you.

That said, please continue posting and don't hesitate to ask away!  We're here for support and to answer any questions that come up for you.  Good luck as you decide your next steps!

Warmly,
Jill

Lena,

I would like to echo what Jill said but also wanted to make sure you saw what I posted on your other thread "Good Blood Flow"...


DJ wrote on Jan 20^th, 2005 at 11:16pm:

Lena, If your angiogram shows the "puff of smoke" and an 80-90% occlusion in your left cerebral artery, I would strongly encourage you to contact one of the MM specialists talked about on this site ASAP! MM is a progressive disease and even with the medication, chances are your symptoms will contine to get worse instead of staying the same (or getting better).  It's better to get an experienced opinion on your case before any serious or permanent damage is done. Please feel free to contact me if you have any questions... DJ

Hi Shanna,
I was doing some research, when I came upon this site. I’m really sorry you have to go through this and everyone else on this site but since you live in LA, Ca, you should insist on seeing Dr. Sanossian. Although, I can relate to you directly, indirectly I have a similar situation. Sometimes seen a Dr. that you are comfortable and trust brings great relief and calmness. Medical Technology is very promising today. So you need someone you feel you can trust. From personal experience, I suggest you continue seeing Dr.S.
A family member was one of his Patients, back in 2000. A year later I was diagnosed with Cerebellum Mass. I was admitted in the hospital over a week for testing and all, as well as scheduled for surgery that Monday. I was really scared, at the time the doctors thought in may have been cancerous.
A Psychiatrist, whom I had befriended for about a year, worked at the same hospital and knew him quite well. As a friend, he suggested Neurologist, Dr. Sanossian for my head-aches, whom he knew and trusted. After discussing the diagnosis and receiving a second opinion from Dr.Sanossian, he suggested that I should wait and get another opinion since it wasn’t a lightly matter and the risks involved. This was back in 2001, when I decided that I wouldn’t proceed with the scheduled surgery. It’s been over 5 years and  I’m SO happy I didn’t.
I refer to him as my Guardian Angel. I hope he is yours as well. Best of Luck.

May God Bless,
Lindy