Hi Annie,

I would strongly advise you to listen to your gut feelings.
If YOU feel there is something wrong, follow through and check it out - your life is more important than anything else and you owe it to yourself and your family to not leave any stone unturned with this disease (like DJ did.)
Change your doctor if need be - surgery will improve your chances of not having a serious stroke, and help you live life normally. I wouldn't be relying on a dose of aspirin to stave off this disease. I would really urge you to take action - DEFINITELY get a second opinion. You are in my thoughts and prayers
Moira

When my little boy was 7 months old he had his first stroke.  They did not at that time diagnose him with having MM.  After running several test and staying in the hospital for a week they sent us home thinking it was a fluke and with some anti-siezure meds and a half baby aspirin a day.  I know you don't want to hear this, but about two months later he suffered a bigger stroke that left more damage--this was without the diagnoses or surgery, but with aspirin.  

We have UHC insurance and Medicaid for Trey.  UHC is through my husband's job and because of Trey's disease he has Medicaid.  Trey has been diagnosed and is about to reach his one year post surgery anniversary.  He is no longer on the siezure med but is still on the half baby aspirin.  He was also put on a low dose Heparin after the second stroke but has since been put back on ASA.  In saying all of this, I am trying to say that the aspirin is not a sure thing.  As you have read it is stressed here on the board to find a MM specialist, neurology/neurosurgery.  We do not have a team of MM specialist, but the doctor's who see Trey do know about and do deal with MM.  I do believe though as everyone else that specialist are the ones who you should go to if you can.  We had circumstances and timing that influenced us.  Trey has been great though.  The surgeries have seemed to have done the trick in his case, at least so far.

I hope that you are able to find a way to see a doctor who is more familiar with the disease or better would be the specialist.  There are some listed on this board and I know that you are able to send them films and things and they will give you their opinion.  Good luck and I will keep you in my prayers.  

Michell

808annie wrote on Jun 18^th, 2005 at 11:31pm:

Should I be worried or is her report a good thing ?

Hi Annie,

I couldn’t agree with Moira more!! and yes, I'd be worried about that report. I certainly don’t want to frighten you, but the facts still remain, MM is a progressive disease. I’ve seen people who were told they had good blood flow and had little or no symptoms, yet they still had damaging strokes. That’s what we want you to avoid. No one can say when a stroke will affect a person with mm disease. Don't get me wrong, perhaps you don't need surgery at this time, I don't know your specific case and I'm not a doctor, but what worries me is, WHY are they waiting and WHAT FOR??

If you did in fact read and do any research, I believe, that’s why you’re uncomfortable with your neuro’s opinion, to simply get by w/aspirin therapy & a very relaxed lifestyle, doesn't sound right with MM. With many here, we found that many in the medical community simply do NOT know enough about Moyamoya, “the disease” to know if it’s safe to wait, but the more experienced doctors do know. The experts will also tell you that NO medications prevent the arterial narrowing process from progressing or keeps the moyamoya vessels from developing, and there lies the danger. The only effective treatment or option is surgery in most cases. Have you asked how many patients or how much experience these doctors have had with this disease?

I understand you’re caught between a rock and a hard place with your insurance, but please don’t give up. If I were you, I would gather all the information and research I could, to take with you on the 28th to discuss your case with knowledge and facts.  Knowledge is so comforting when traveling this road, cuz you'll know if your heading in the right direction with your doctors. Also… you could overnight your films to some of the mm specialists (ASAP) and ask for their opinion. How could she argue with an expert opinion and that would also ease your mind, knowing if you’re heading in the right direction.

[smiley=twocents.gif]

We're here if ya need us for anything and you're in my thoughts and prayers.

Mar

I want to give you a hug.

You definitely need to get a second opinion.  I know others will reply to your post as their local insurance would not pay for out of state medical care (where MM specialists are)...but they were able to get their films to an expert for second opinion, and that expert wrote a letter for them to use to show to their local neuro and insurance company...its your life and with all the research you have under your arms, the more you know, the more you can defend your case.

I can tell you that they told us that Cara didn't show the "classic MM symptoms" yet...may never will !!!!  May be in her 20's or 30's when she'll finally need surgery.

At age six...our second opinion ...suggested surgery asap.

This disease is progressive, and continues at various of paces for different people...a stroke could strike without any warning, the damage could be irreversable....and sometimes you need the opinion of an MM expert that deals with this disease on regular basis...daily or weekly...rather than once or twice a year even though those are great neurosurgeons...it still makes a difference to have someone that actually works with MM.

I will keep you in my prayers...and hang in there, don't give up...you will be glad you kept at it.   :) CarasMOM

Hi Annie-

We all understand your feelings right now and are here to help. After my MM diagnose was told that surgery was not recommended and i was put on a blood thinner. Over nine months i continued having symptoms and had to just hope for the best. Luckily i found this website and contacted a MM specialist and had surgery about two weeks later now i live a much normal healthy life. Like others have said its your life and i have come to realize that doctors dont always know everything. Be strong and let us know how things go! You will be in my thoughts!!!  

[smiley=heart.gif]Christy

Please send your films to Dr. Scott or Dr. Steinberg you will not regret it....its your life!!!!
                      Nancy

Hi Annie,
Annie,

As others have mentioned, first and foremost, MM is a progressive vascular disease.  For this reason, blood thinner is not the long term answer.  There are many factors that come into play.  My brother Kevin (cubbie) was on blood thinners and was intially informed he did not need surgery because he did not have a reverse blood flow however, he did not have much reserve blood flow either and had already had a significant stroke.  I sent his films to Dr. Steinberg who said he needed surgery.  He was absolutely correct.  By the time I fought with Kevin's insurance and finally got him to Stanford, 10 months later, his blood flow was in reverse (negative).  I could tell he was "brewing" for another stroke as his speech and balance were worsening.  As a result of getting to Dr Steinberg Kevin is alive today without having another further dibilitating stroke and progressing wonderfully.  Annie, none of this is intended to scare you but to assist you in understanding how MM progresses in a short period of time and the importance of a second opinion by a nuero who is dedicated specifically to understands and has extensive experience with moyamoya.

First, I would get a second opinion from a nuero who is familiar with moyamoya like Dr. Steinberg or Dr. Scott.  All you have to do is simply send your films.  Their addresses and telephone numbers are obtainable through this website and the links.

Second, don't let insurance stand in your way even if it is Medicaid.  You can fight this.  I have been an insurance agent for 30 years. I had to fight to get Kevin to Stanford and here is how I managed Kevin's insurance.... Contact your congressman because he/she has to respond.  Additionally, contact your local Medicaid Deputy Director.  There should be an appeal process in place for you to appeal their decision and the decision by Kaiser.  I would do this after you have sent your films for review by either Dr. Steinberg or Dr. Scott so you have supportive information to back your claim. Most all insurance companies have "centers of excellence" in their network of doctors and hospitals.  Annie, if you need any assistance with fighting the insurance, I am more than willing to assist you.  Simply e-mail me.

Annie, this isn't about insurance or one doctor's opinion. This is about your life. You owe it to yourself and desrve to know you have done all you can to be taken care of by an expert in moyamoya. If these people truly value human life, they will listen to you and do the right thing.  

Hugs,

Lore    

Aloha Annie,

I feel, and have actually lived through what you are going through.  Here in the islands, we are limited to our resources.  It wasn't until my THIRD opinion was the option of surgery offered to me.  Please go with your gut feelings.  Please contact me and we can discuss this further.  If you are unsure, seek additional medical attention.  I have a friend who works at Kaiser Moanalua and has had 2 bypass surgeries.  One in UCSF and one at Queen's.  Although, she did tell me that she now sees an excellent Neurologist at Kaiser Moanalua.

Take care and keep in touch,

God Bless,
SFH :)

808 Annie,

I agree with what others have written.  If I were you, I would contact contact medical imaging at Kaiser and request that all your films be forwarded to Dr. Steinberg.  I'd also email Dr. Steinberg and let him know that you've been diagnosed with moyamoya disease and would like his opinion.

If he agrees that surgery can be put on hold, then I would have faith that he is right.

If he thinks that surgery is needed, though, I would get it done.   Medicaid can be worked around, and so can travel expenses.  If you do get to the point where Dr. Steinberg says you need surgery, and you are having trouble with medicaid/travel (or anything else)... email me.    But first get Dr. Steinberg the films, and see what he has to say.

Jenny

Tyler is on Medicaid and I was told to let the doctors in state do the surgeries, they wouldn't even answer my questions. I fought and it took 7 months from Tylers stroke, till he got the surgery, and I had to cancel a surgery here in CO, but I got permission to take Tyler to CA and I am thrilled I did, something tells me he wouldn't have done as well here.


Do what you have to. Send your films to Dr. Steinberg in CA, it doesn't cost and you will know what he thinks should be done.

Rena

Annie,

I can almost feel your pain. I am a 19 yr old and had a indirect bypass done on the left side in December 04. I have a blocked artery on the right side but supposedly no concern right now for surgery.

I am at the mercey of the county i live in as i am under free insurance from the county. I was doing perfectly fine for the first couple of months after my surgerys then i started have seizures and now a possible tia. My surgeon has told me that its too early to tell he will not run any test and all that. He has even gone on as far to say that if the surgery on my left side doesnt work there is nothing anyone can do implying that if the left side doesnt hold up and my right side goes too im in alot of trouble.

Well the only real specialist in the state of florida are in a diffrent city so i had to get a few letters from my nuerologist and my primary care doctor its taken a few weeks but my insurance is paying for my to go see a diffrenet specialist in a diffrent area so it can happen.

My surgeon wouldnt even sign a letter of recommendation for me to go see another specialist and was in my opinion trying to god with moya moya. I refused to believe that if surgery doesnt work there is nothing anyone can do cause there are always other options.

Dont give up im shure there is something that can be done and there are loop holes in the system that sometims just have to be find. Good luck

Annie,

I went to see Dr. Nakatori Fukushima, and I know 2 other people from Hawaii who also saw him.  I wrote this in a previous reply, but I'd suggest you looking into seeing him.  I also noticed that many on this website have seen a Dr. Steinberg in California which may be cheaper than traveling to North Carolina.  

Please do not give up hope...miracles do happen!  Dr. Fukushima's office number is 919-239-0264.  To find out more information about him, see:

http://www.carolinaneuroscience.com/raleigh-map.htm

http://www.ia.wvu.edu/~magazine/issues/summer2004/htmlfiles/hope.html.http://www.skullbaseneurosurgery.com/fukushima.htm

Take care,
SFH

Annie,

I'm very sorry to hear that you are having such a difficult time with this.  I agree with everyone else that, at the very least, send your films elsewhere for a second opinion.  Then, depending on that opinion(s), go from there.

I can relate as I am on Illinois Medicaid (also have Medicare which, by the way, doesn't believe in surgery for MM and won't pay for it, anywhere at anytime  >:() and I fought long and hard to find adequate help/answers.   I never did get approved to have surgery at Stanford but I was able to consult with Dr. Steinberg a few times which steered me in the right direction with the doctors here in Illinois.  Unfortunately I have spent many, many thousands of dollars out of pocket throughout all this.  Frankly I had no other options.

Hang in there Annie!  It will get frustrating and tiring to fight for proper health care for this but it's worth it in the long run.  What other choice do we have?  Just take this one step at a time, with the first step being sending your films to one of the MM specialists for a second opinion.  

We're here for you every step of the way! [smiley=hug.gif]
Lisa

Annie

Just like others have said, we are all behind you here.

I am with KAISER here in southern California... and i know how frustrating kaiser can be, hardly anyone knows what moyamoya even is!

BUT my neurosurgeon and his team are very experienced with moyamoya and treatment....i know how difficult referals are outside of kaiser, i could not get a referal out...

one plus! my doctor at kaiser trained under dr steinberg... so i felt safer!

maybe your kaiser doctors could contact my kaiser doctor for advice?

i just had my first surgery and my next is scheduled for aug 25. i am really happy with how things have been going. however, before i found dr vanefsky i was not happy with kaiser it was really difficult to get diagnosed - no one knew what moya was.

anyway - he handles all of the moyamoya and other neurosurgery for the entire state of california...

his name is Marc Vanefsky and he is located in anaheim hills California Kasier..... 888 988 2800

hopefully this can help....

good luck!

shanna

shannaholzer@aol if you have any questions!

annie

i just read your post again...

i have a lot to share with you about kaiser! i can sympathize!!!

i also have a lot of wisdom to share... you have to be aggressive with kaiser because they will sweep you under the rug... but you have an advantage because you have a rare disease! they have to pay a lot of attention to you, and believe it or not, there is expertise within kaiser re: moyamoya!!!! well, in CA... there is!

BUT this is great news.. because kaiser will move you around within kaiser easier than refering out....

sorry to post again... i just want you to know there is hope... and good people to help you....

if i can do anything or give you advice about how to pursue this, let me know!!!!

shanna  :)

Annie,

To give you a hint of hope i was on the phone with my insurance company all morning as they were getting information on my disease. Since my nuerologist and mr primary care both signed letters for me to go out of the zone as of right now the case worker that called said it has a couple more people to go threw but should more then likey get approved. The lady from the insurance company is going to call my surgeon to see why he wouldnt right one himself.  She said when it comes to insurance and things like that you have to keep fighting and looks like im finally going to win. Keep fighting dont give up and sooner or latter with such a rare condition someone will cave in.

Hello from the Uk, I felt I wanted to reply even tho I dont live in the states.
In the Uk we dont have to worry about insurance as we have something called the 'national health service ' and fortunatly my litle girl Lydia'streatment is all free.
But I felt I must reply, I am in the same boat as you in that Lydia 's consultant also feels that her moyamoya is being controlled by asprin and that surgery not worth the risk( UK  seems to hold back on surgery and Doctors think USA too keen to go down surgery route!)

However, when I joined this website a few weeks ago, the main advice was to get a second opinion and going on responses so far to your message, looks like you can get that for free.
I know that I am going to get 2nd opinion now and I have an appt in 2 weeks, so I will post the site with the outcome!!!

So dont despair, you will get so much advice from this site, you are not alone and looks like you have options to help you make an informed choice.

Good luck

xx Louise (mother to 9 yr old Lydia diagnosed with MM 2 years ago but so far doing well) :-*