first asking:

am barely beginning the process and am asking for as much support as people. i've posted before, but because i've recently been diagnosed last month, am still new to this whole dealing with moyamoya process.

tomorrow i have an appointment with my neurologist and neurosurgeon. they'll be telling me, i'm sure all the things you all have heard when they first diagnosed you or a loved one. i really don't know what to expect.

i'll update you on what is going to be said. but i just wanted people to know, that i'm really thankful for this site, hope that you won't mind that i'll be writing on this board, each step of the way, soliciting support.

you all have served as an inspiration for me, but truthfully, i don't know how to stop from being scared. can you help?

love,
connie

ps. is there someone in northern california that i could meet with over coffee or something? just to talk and for comfort?

Connie,

Check your PM's!

-DJ

Hi Connie,

Just wanted to say that being scared is probably a very normal response.  My husband had three strokes before diagnosis and subsequently underwent STA-MCA surgery a year ago in March.  He's doing extremely well.  There is light at the end of the tunnel - just give it some time and take it day by day.

Best wishes to you.

Jane

Hey Connie

chin up girl..i know its hard, we are in the process of more tests for my daughter and then surgery on the 18th and the 26th with Dr. Steinberg.  

i know how scared you must be, this is a wonderful website for information and support.  they have given me a great deal of support here, and i'm thankful for every bit of it.

My mom, Holly and myself will be at Stanford next wed for more appointments do you think we can meet up sometime then?  We will also be back the following week for her first surgery and we will be there a few days if that works better for you....would love to meet you and be able to give you a hug and talk with you.  

let me know if you are interested and i'll give you my email or phone numbers, or you can give me yours and i could call you or email you if you would rather.

take care and we'll keep you in our prayers as we do everyone here.

p.s.
to everyone else here at Moyamoya.com...I would like to add someone else to your prayers, its a 5yr old boy that does not have moyamoya but has 3 tumors that are cancer, they are located in his brain, and he is going through quite a bit of treatment but the tumor continues to grow.  He is at UCSF and his name is Tyler.

thanks everyone
Hillary

Being scared is very normal.  Who wouldn't be.  Just remember you are not alone one this long journey.  I may not be in California, but I am usually at my computer.  Best of luck to you.

Honey---being scared is very normal---and we can all tell you to keep your chin up and not be scared, but the reality is----you're still pretty darn scared.  Sometimes, when I am worried or frightened about something, I read these words from Matthew 6:25---"Do not worry about your life, what you will eat or what you will drink, or about your body, what you will wear......" and the scripture continues on from there.

You can displace your fear and worry by choosing to focus on God's love and faithfulness.....He will see you through this......know that He always walks beside you and will carry you when you cannot carry yourself....

And, if you are a praying person, just say a short prayer:  Dear God, thank you for your promise to walk with me.  Please replace my fear with your peace.  Amen.

We are all here for you......Good night and God Bless. Pat

Connie---I forgot to mention that my sister, Diane Main, lives in San Jose, CA.  She is a 5th grade teacher at a Christian school in Milpetas.  She is a wonderful sister and a wonderful person......I know that she wouldn't mind if you contacted her at taz@netmagic.net.  And, my parents are out there for her sweet baby Cameron's christening...they'll be there at least through May 11th....and they had to live through the worst of it with me.  Contact my sis......she will help you....PatM

Connie~
Being afraid is 'normal' -- but who really wants to be that normal! I'm so sorry you have mm. I have it too (first stroked in 1999 when I was 49) and for the first couple years I was terrified all the time. I'd be at the grocery story and think 'I'm gonna stroke right here' and realize I was in the frozen food section and didn't want my obit to read "Linda died next to the Green Giant corn" a little humor helped. Time was really the only thing that truely helped. I have one of those First Alert things that I can press and it will call me and either I'll respond or they'll send help. That made it easier to be at home when my husband was at work. I wear it constaintly at home. It's really hard going thru all this and being afraid is normal. I'd bet that all of us are afraid.

My love to you,
Linda

Connie~
My husban Jack and I will be at Stanford next week from the 9 - 13th  I know Hillary will be there too and we hope to get togather and meet oneanother. Perhaps we could all meet, or meet separatly depending on schedules and exhaustion levels. Would love to give you a real hug and lots of support.
Love,
Linda and Jack

i was wondering, there's a strong possibility that i won't be able to go to Dr. Steinberg because of insurance complications. my insurance and healthcare provider-Kaiser Permante doesn't allow for outside referrals of their surgeons can perform the surgery. apparently my surgeon has had half a dozen experiences with the sta mci surgery. can people who have been to other doctors (other than the coveted specialists) help, if they don't mind, to tell me of their experiences with their surgeons? in other words, will it be okay if i don't go to Dr. Steinberg? (fingers crossed)

connie

Connie

what type of insurance do you have?  that would help if we knew that...but honestly i would fight to get to Dr. Steinberg if i were you, let me know what i can do to help.

Hillary

Hi Connie,

The only thing that's important at this point, in my opinion, is that you read and learn all you can about moyamoya, every aspect! This will help ease your fears believe it or not, because you will know ahead of time about everything that a doctor or healthcare professional is telling you. You will know the pros, cons, and statistics, etc. and be able to make an informed decision about what is best for you. We all suggest Dr. Steinberg, because he is the best!! Naturally we would want you to have a doctor who is experienced with moyamoya. If you read all you can, as I had suggested, you will soon find out how unfortunately, many doctors know so little about moyamoya, and make life changing decisions without the experience needed for this rare disease. If you choose another doctor, it's just smart to pick one with experience so you will get the best possible care for your individual case.

I hope I explained that alright. Your moyamoya family wants only what we believe to be the best experienced doctor and care possible for you, but that's your decision. They're are many good doctors listed here on the website, that you can email or contact. We're here to support you and help you in any way we can, what ever that decision is. Our prayers are with you.

God bless,
Mar

Connie,

Check your PMs on this but I totally agree with Mar.  Know your Moya Moya and that will help you to make an informed decision as well as finding out if the surgeons know their Moya Moya!  While I personally think Dr. Steinberg is wonderful, sometimes it's impossible to go to him.  Inexperience doesn't always equal bad doctor and vice versa.  Learn what you can, feel out your doctors and go with your gut.  

It WILL be okay!  
Lisa

=LA wrote "I'd be at the grocery story and think 'I'm gonna stroke right here' and realize I was in the frozen food section and didn't want my obit to read "Linda died next to the Green Giant corn" "

I read that part Linda and laughed my butt off! [smiley=laugh.gif]  I have to admit that I've had similar thoughts running through my head although mine was in the cookie aisle!   All kidding aside, I think having MM, stroke or the possibility of stroke is no doubt scary.  It's like walking around with a time bomb inside you and never really knowing when something will explode.     The only good thing about having MM is being able to use it as an excuse when you forget something or do something stupid.  I constantly blame stuff on my having Moya Moya, whether it's true or not! ;;D  Anybody else try this?

Thanks for the laugh today Linda!
Lisa

Hi Connie -
I believe Linda sent you all our contact info.
We will be in the east bay tomorrow night, and menlo park the following four and would be very happy to share some time with you.
DJ also has our contact info if you don't catch this before we're on the road. Hillary should as well.

A very broad statement regarding your concern is that I believe the sta-mca bypass is not incredibly rare (previously practiced for other reasons), while specific treatment of moyamoya is not very common indeed! Certainly a second opinion by someone specializing in mm seems like a real good idea, even just to confirm that the right course is selected for whomever performs any work.  

We REALLY like Dr Steinberg, but heck, he was less than half as experienced at this when he did the bypass for Linda  ;)

Hope to hear from you so we can get together

Jack and Linda

LisaH wrote on May 8^th, 2004 at 6:19am:

The only good thing about having MM is being able to use it as an excuse when you forget something or do something stupid.  I constantly blame stuff on my having Moya Moya, whether it's true or not! ;;D  Anybody else try this?

Funny, Lisa!  I blame it on the brain surgery!  When I'm at work, and I forget someting, I say - That was pre brain surgery so I have an excuse!"  Jokingly of course - I really don't seriously joke about brain surgery.  Reading your comment made me laugh, though!

-Shari

PatM wrote on May 6^th, 2004 at 11:20pm:

Connie---I forgot to mention that my sister, Diane Main, lives in San Jose, CA.  She is a 5th grade teacher at a Christian school in Milpetas.  She is a wonderful sister and a wonderful person......I know that she wouldn't mind if you contacted her at taz@netmagic.net.  And, my parents are out there for her sweet baby Cameron's christening...they'll be there at least through May 11th....and they had to live through the worst of it with me.  Contact my sis......she will help you....PatM

That's me, Connie!  Just let me know if you need to talk.  I don't drink coffee, and life with a newborn is crazy, but at least I am close by and a good listener!

Diane in San Jose

STrantas wrote on May 8^th, 2004 at 10:59am:

I really don't seriously joke about brain surgery.

Seriously joke . . . now, there's an oxymoron!

I make the same offer to you, dear, that I hae made to everyone on this website----and, this is ann open invitation to all moyamoyers, adults and children, alike-----I invite anyone who wishes to come to New York Presbyterian hospital to stay at my house for as long as they need to----My neurologist is Dr. RAlph Sacco (212) 305-1710 and my neurosurgeon, who is VERY EXPERIENCED AND BRILLIANT is Dr. E. Sander Connolly, Jr. (he has more than 51 moyamoya surgeries under his belt)-----he is on call 24/7------he has literally devoted his life to neurosurgery------(212) 305-0376----esc5@columbia.edu.  

Anyone can come and get a 1st, 2nd or 3rd opinion.  I live only 25 miles from NY Presbyterian Hospital and I will arrange for transportation to the hospital if I cannot drive you myself........my brother and my friends all know how to get there.......so, I leave this invitation open to all.  Just call me at 201 930-1163  or e-mail me at psmartinlaw@aol.com.......Good night and God Bless....and I have some really great inspirational music that we can listen to......"I will sing of the mercies of the Lord forever; with my  mouth will I make known thy faithfulness to all generations." Psalm 89:1 (KJV).....Let me know.......Pat :-* :-*

so here goes the story: [smiley=huh.gif]

i have set up an appointment with Dr. Steinberg for June 7th? Later than I hoped since my doctors at Kaiser recommended that I have surgery soon (even within the next couple of weeks). I'm paying for this consultation visit out of my own pocket (as a student), and am desperately seeking insurance coverage from Kaiser.

They tell me that only my primary phyician, Dr. Sebine Hill (in Union City, California) or my neurosurgeon Dr. Nicole Moayeri (in Redwood City, California) may authorize an external consultation. Dr. Moayeri will not authorize an outside surgery because she can perform it herself. Apparently she's had more than half a dozen experiences with the surgery.  Good thing is, I've had my angiograms and SPECT exams and the proper procedures seem to be taking place. However, the clinic unfortunately, doesn't have any written literature on the disease and that, somehow and honestly, is not comforting (and neither is the more than 1/2 a dozen experiences). Has anyone had experience with Dr. Moayeri?

As many other posters have noted, experience with the surgery is not my concern, its the extensive experience with moyamoya which is my primary concern. my primary physician, Dr. Hill has scheduled for a next week phone consultation. Again, not soon enough.

I've contacted the kaiser member services department and asked about their external referrals procedure. It is etched in stone: A PRIMARY PHYSICIAN MUST REFER. If I do not agree with the physicians than I can file for a grievance which will surely take months.

Pat M. has recommended New York but Kaiser will not let me go outside of its network or jurisidiction. She has hinted at legal action. I don't know what to do. I'm tired, stressed, scared, and angry.

I know it's nearly impossible to get insurance now that I "have a condition." LindaH has done her best to comfort me, but I'm feeling so hopeless.  

I've done my research, as Mar suggested, to help comfort me, but after I read other people's experiences with Dr. Steinberg and then read others who haven't had the best experiences with other non-specialist surgeons, I'm still sick with worry.  :'(


despite it all, best to all, :)
connie

Hi Connie,

Just read your post about trouble with a referral.  Don't give up just yet.  Sometimes you just have to "go to battle".  I'm not familiar with Kaiser but I fought our Blue Cross HMO and won so that my husband was able to be treated at UCLA.  His surgery was performed by Dr. Neil Martin, a surgeon with lots of experience with moyamoya and STA-MCA bypass.  Have you spoken with the California Dept. of Managed Care yet?  If I remember, you need to file an appeal with your insurer before they actually get involved but they will offer you advice on procedure, etc.  Have you filed a formal appeal with your insurer, in writing, advising them of the consequences they may face by not allowing you a referral to a surgeon with specific experience with moyamoya?  You can request an expedited appeal.  With a legitimate request for an expedited appeal, Kaiser must review and decide your appeal quickly (if I remember correctly, its a certain number of days).  If they don't, then the Dept of Managed Care can get involved.  You may be able to make your case that there are legitimate reasons why a surgeon who is experienced with moyamoya may be better able to give you the best chance of surgical success/recovery, etc. etc.  Maybe someone on this site (I'm thinking DJ), or the surgeon you want to perform the surgery can offer you some advice as to what issues to use to best make your case.  It's my understanding that, although yet untested, HMO's in California now have more liability for denials of care by specialists than they used to due to a somewhat new law regarding lawsuits against them.  It's been 1-1/2 years since I've had to fight the fight on my husbands behalf so I don't recall a lot off the top of my head.  I'm happy to look up and forward copies of letters I wrote to our insurer and information I obtained that was helpful to me.  Just let me know if I can help.   You can email me directly at jane7887@aol.com but please be sure to put moyamoya in the subject line so that I know it's safe to read.  I've had some trouble with viruses and am a bit leary of reading email from unknown sources.  

Good luck and don't give up just yet.

Jane

Hi Connie,  

I sure have to agree with Jane, bless her heart... she took the fight to them, and maybe you might have to do just that too. You're talking the best doctors here... and some great help from Jane. We're here to do what ever we can do to help also. As far as you being so worried, I sure can understand your fears girl, all I can say is, this place and the family here have taught me a lesson or two in adversity and we can get through it if we don't give up. Keep fightin and as Lisa says, go with your gut. You're in our prayers.

Hang in there... [smiley=hug.gif]

God bless,
Mar

Hi EVERYONE!!!

Today has been a great day. Great enough to actually get some sleep tonight ;) A group of West Coast MM'ers, our family and friends were able to meet at Stanford and it was such a wonderful experience for me. Thank you so much Hillary, Holly, Linda, Linda and Jack for being so very supportive. Through everything, each person was able to give me their advice and be extremely inspirational. I'm not as scared as I was when I first posted here. Thank you.

It's kind of testament to the power of this website collective.

Bad thing is-I am still fighting Kaiser and the HMO machine-Today, I've spoken to more of their representatives who insist that I must personally pay for my external second opinions. A representative insisted that Kaiser's lack of "specialization" in MM does not qualify as a legitimate reason for an external referral because they still have doctors that are competent and capable of administering surgery and care for MM. In the rep's words, "how do you know we can't do it?" and something along the lines of-'you (I)  haven't tried.'  "If our health care fails after a long period of service then maybe you can..."

But, I will go back to my doctors, make another request for an external referral (at least to defer the intial cost of the visit with Dr. Steinberg). If that fails, and if I decide to pursue Dr. Steinberg beyond a consultation, then it's to the grievance process I go. Thanks to everyone's support, I feel like I have the energy to take it there, if I choose. Regardless, I have received the best advice on this message board and via personal messages. Each night, I get so excited to check this website!!!

For the great news, thanks to everyone's support, particularly DJ's, I've been able to move my appointment with Dr. Steinberg to THIS MONDAY!!! YahOOOOO!!!!. Now I can definitely get the ball moving.  I can finally meet THE Dr. Have him comfort me about this disease, give some advice, and even more. YAY!!!!

Boo Kaiser's Stingy Insurance policy and yay MoyaMoya.com.  

If anyone reading this had had to battle their insurance companies, have copies of their grievance letters or any information about insurance grievance processes, I would be so grateful if you were able to share them with me. Please.

I'm also thinking about doing a fundraiser. If anyone has any fundraiser info, that would be great!!!

SO MANY HUGS AND THOUGHTS TO EVERYONE,
Connie

Oh Connie that is such great news that you can get into Dr. Steinberg earlier!  Like I've said to you before, maybe he can put to rest any doubts you have about the surgeon at Kaiser.   Maybe not.  Should this whole insurance fight not pan out,  please keep in the back of your mind what I wrote to you in the last private message.  In this day and age (especially in CA right now), surgeons will not say they can do the surgery unless they are 100% sure the outcome will be fine.  Then,  should you need a more specialized doctor for follow-up maybe you could see Dr. Steinberg- although you may not have to.    Like many people have said, many surgeons are absolutely capable of performing the surgery itself but it's the follow-up (and of course the diagnosing!)  that really requires a good understanding of MM.  Although, after meeting Dr. Steinberg and the entire staff at Stanford, you are really gonna want to go there!  I've never met such a great group of people, as a whole,  in the medical field.

Also, I am so happy to hear you in a more upbeat mind-set!  ;;D  So glad that you got to meet all the other MMers!  

Hang in there!
Lisa

Hi Connie - I'm thrilled about your wonderful news and your peace of mind about being so nervous!  :D For the insurance company woes...I hear ya!  HMO's are terrible about taking care of patients with rare disorders.  They make me so angry  [smiley=mad.gif].  Maybe Dr. Steinberg can join the fight with you.  Good luck in your battle with Kaiser - do whatever it takes!  

-Shari

Hi Connie,

Check your email.  I've sent attachments of two of my appeal letters to you.  I'm glad to hear you're seeing Dr. Steinberg soon.  I'm not familiar with him, but according to this site, he's one of the best of the best.  I would definitely ask him what advantages a surgeon and hospital with specific experience with moyamoya would have versus without.  He sounds like an up-and-up guy so I would hope that honesty would rule over the "good old boys network".  It's always been my experience that doctors don't want to say anything negative about another doctor.  Anyway, he may be able to give you some ideas for an appeal.  With respect to Kaiser's insinutaion that you "give them a try first" - there's a perfect example of an issue you can make use of in your appeal.  Given their lack of experience with moya moya, it it really Kaiser's intention to let you be their guinnea pig?  Are you really expected to wait until their care fails you before they allow you care by a specialist?  At what cost to you?  Unnecessary progression of the disease, stroke, etc. etc.  I could go on and on but I'm sure you get my point.

Jane

Connie,

Haven't heard from you in a while.  How's your situation going?  Any new information?

[smiley=huh.gif]

Hi Connie,

Haven't heard from you.  Did you get my emails of May 13th and attachments of letters I wrote during my battle with our insurer?  

Jane

Hi everyone!

Connie e-mailed me a couple of days ago and I thought I would share with you a little of what she wrote- I hope she doesn't mind.

She met with Dr. Steinberg (whom she loved!) and he confirmed her MM diagnosis but suggested a different surgery than her original surgeon.  She says the best news though was that Steinberg felt that she didn't need the surgery quite yet which gives her time to research other insurance options and/or a new job.  Connie has also been taking time to work on her graduate thesis which she just completed.  She closed by saying that she would check back on the board soon.  I sure hope so!  ;)

Connie sounded very upbeat, positive and a lot less scared!  I'm so glad that her appointment with Dr. Steinberg went well and made her feel more comfortable about having MM.  

Hope you don't mind that I shared this Connie (when you read this)!  So many of us have been thinking about ya!   [smiley=hug.gif]

Lisa

HI EVERYONE!!!!!!! this is a little long, prepare yourself.

Thanks Lisa for helping me out. I've been busy with school but I couldn't stay away too much longer. Sorry, I haven't updated.

Things did go really well with Dr. Steinberg, last week. I'm looking forward to the bilateral surgeries actually. Though my Kaiser doctor suggested a unilateral, Dr. Steinberg suggested both which would help to reduce the risks of hemorrhages and strokes. He also says he knows that Dr. Moayeri is a good surgeon (a plus) but doesn't know about her experiences. (If and when I talk to her again, I'll definitely apply DJ's suggested questions).

I don't absolutely have to have surgery yet, which gives me enough time, as Lisa explained, to research insurance and other funding. Dr. Steinberg says there might be some insurance alternatives: Medical? Other providers? He gave me a long list to search from. and they, at Stanford, really want to help me. that's so comforting!!

He also says my condition is well enough for me to work (I'm not sure if I can work the way DJ does though). Maybe I'll work so hard I can pay off the out of pocket surgery? (maybe not :( )

Best thing is, he also says after surgery, I'll be all better. Isn't that great? That makes me want to jump for joy. But then, I get smart and realize that won't help the brain.

Sorry, I took a little detour from health related stuff these past few weeks and haven't checked in. I took a big breath, and worked on my graduate thesis. Finished and am walking at the commencement this Saturday!!! Finally. I'm a master!!!! YAHOOOOOO!  ;;D

This week, I set out to continue my research for insurance and fundraising. (JANE-thank you so much for sending me your information. I sent you a message weeks ago, I guess it never went through. Please check your PM. and thanks HILLARY for your samples, LISAH for your peptalks and ideas, LINDA and JACK for your support and ideas-talk about moyamoya family).

I had a really big question for people. My friends have been researching fundraising options. If individuals or businesses are interested in making donations to help defray my medical bills and want a tax write off, is that possible? Do I have to go through a 501c3? Can a nonprofit set up a fund for individuals? What would that look like? What did others who received donations do? Does the new moyamoya foundation's work apply to this?

I'm feeling pretty good. Yesterday I applied for Blue Cross insurance and cried because I was scared they'd deny me. But that's only because I get like a baby when I start doing direct moyamoya work. No worries, I'm better and back on the board.

Sorry again for the delayed updates. But,THANK YOU for the continued support throughout the whole process. and Thanks for being a family to me and to my family. I've referred almost everyone and anyone to this board. Oh and did I mention that the moment I met the Stanford staff they referred me here? I said-I got that one covered!!!!

love you all very much,
connie

Connie~

Congratulations on GRADUATION!!!!!!!!

The research your doing re: mm  is fantastic. I'm sure it will be a benefit to you.

Jack and I loved meeting you and J.
Our hearts are with you thru all of this.

We just got home last night after visiting friends. First time in three years -- such fun.
I'm so glad you're getting this mm under control now.
You are very intelligent and determined.

Jack and I send LOVE,
LA (Linda)