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?

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

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.

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~
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

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

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

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

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



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

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

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 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

Hi Connie - I'm thrilled about your wonderful news and your peace of mind about being so nervous!  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  .  Maybe Dr. Steinberg can join the fight with you.  Good luck in your battle with Kaiser - do whatever it takes!   

-Shari