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

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

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.



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

Mar

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!!! 

Christy

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

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

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'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!
Lisa

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 

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)