Firefli,
         Welcome, I am sorry I dont think I have seen your posts before this........You have done the right thing sending your films to Dr Steinberg, We head out tomorrow for California, hospital stuff should take about 2 weeks but we have decided to stay a week longer to let Robert recover, before returning, Dr. Steinberg responded to us with in a week of receiving the films, it then took us a full month to get the Childrens special Health Services on board with a contract amount Stanford could accept. Airfare from Michigan to San Fran ran about $550.0 a person(remember I had to book on 3 day notice more timel ower rates, also fly on mon,tues,wens,or thrusday. I saved 200$ per person by coming home on monday as oppesed to sunday.
I received a heck of a deal from the Pacific Hotel (listed here under patient Resources) for a extended stay/Stanford medical discount of 59.00 a night for a dbl queen kitchette w in room Jaquizzi.it also incudes continental breakfest, and some form of a dinner when you call talk to Dena(no one else) and mention my name as I will make sure to make her aquaintence and try to help you out...also I got the best Price from Budget rental cars $559 unlimited mileage for a midsize sedan keeping it from the 19 of Oct to the 13th(that was with a goverment employee discount/Julie is a postal employee)

Now about Dr. Steinberg, We sent films to 8 Drs. we  recived recommendation from 4 of them 4, Dr Steinberg was the only one that Bothered to  contact  our in state Neurologist, Also Dr Steinberg and Stanford are the only ones that would due it all in one trip (for example Mayo wanted use out there for 4 days of tests before they would even consider scheduling surgery within the next to months following our  appointment) Dr Steinberg in my humble opinion is not one of the best, rather he is the best............I do not know the man, we havnt met or spoken yet, I am casting this opinion on what I have read,and heard, (my brother caught a Discovery Health Program on MM, featuring Dr. Steinberg, the Program repeatly referred to him as the Pioneer of the Direct By-pass in MM patients)........I hope this helps you, I will let you know how things go out in San Fran

Best  Wishes and God Bless

Mike

Thank you Mike and Trina for the info.  I will check all that out and hope to here form Dr. Steinberg soon on what will happen.  I will keep you guys posted. 
Thanks again.

Jeana

Hi jeana,

sorry you have this dx.....but you came to the right place for info and support. I just finished my surgeries w/Dr Steinburg end of Aug.

I wrote a posting ...."heading to Stanford" it pretty much journalizes my surgeries and recovery period if you want a day by day coverage of what it was like.

BTW: it wasn't so bad : )

now I am 6 weeks post 2nd surgery and I am pretty much back into my routine (sucked into daily life and chores) but I get fatigued very quickly still.....guess that's normal. It will take a few more months before I am "normal"....but overall I am feeling pretty good.

My headaches are almost gone....and the daily dizzyness is a thing of the past. Some sx's are still around...but I am hoping they will diminish in time.

Good luck to you....and keep us posted.

warm wishes....Diane : )

Hi Jeana,

My brother Kevin (Cubbie) is a Stanford MM patient. You will hear back from Stanford soon. They were very good about getting back to us quickly. Actually, I believe once they received the films it was only about 3 days give or take a day.

The length of stay will depend on specifically what you are having done and how well you do. For instance, are you having one side or both sides done. It will probably be a 2 to 3 week stay. Again, it depends on a number of different factors. We were at Stanford for 3 weeks. Sometimes it is just a personal preference as to when you return home not necessarily medical. Again, it can be different for each individual.

In addition to the airflight assistance, and there are several such as Mercy Flight that Trina mentioned and Angel Flight. These are listed on the board. Also, there are motels in and around the Stanford area that offer discounts. You may want to speak with a Social Worker at Stanford who can assist you with the best reduced motel/housing rates depending on your particular financial circumstances.

I know how overwhelming this can be. Try not to be scared. Sometimes easier said than done. Dr. Steinberg is a MM expert and he has perfected the surgeries over the past 15 years. He has an awesome team and they work as a team and the whole thing works like clockwork. It's amazing to me not only how superior Stanford's MM program works but how well the patients recover. Just remember, there are many MM patients on the board as well as caregivers and relatives too that are here to support you through your journey.

I hope this is of some help to you and please keep us posted.

We're here for you Jeana!

Hugs,

Lore 

Hi Jeana,

I'm so glad to hear you spoke with Teresa.  I can only imagine how overwhelming this is for you, and my best advice is to take a deep breath and to try taking things one thing at a time.  You asked for the upside . . . well, here it is:  As frightening as this is, you have something that is very treatable.  Secondly, you're talking with a top notch neurosurgeon who truly is an expert with this disease.  You simply couldn't be putting your care in better hands.

I do recommend that you contact SS here at Stanford.  Did Teresa give you a contact name and number?  If she didn't, I would be happy to help you out with that.

Lastly, I'll tell you a bit about myself.  I am the mom of a MM patient who was diagnosed and had her surgeries by Dr. Steinberg.  My daughter (Tara) was 17 at the time and she's now almost 20.  I've had the experience of going through this as a family member, and completely understand how frightening this all is.  Tara is doing wonderfully well now - in fact, you'd never know she ever had any kind of surgery.  Long story short, because I was so impressed with the program at Stanford, I now work for Dr. Steinberg.  He's my hero!!

I'd be happy to talk with you further, if you'd like.  I can be reached through this site or on the phone (same # you have for Teresa).  Hang in there and try to approach things one step at a time.  Never hesitate to ask questions.  There are some terrific people here, who have all traveled this path one way or another!

Warmly,
Jill

Firefli,
  It's been awhile since I've had a chance to visit the website.  But I'm glad I did just now.  My 24 year old son Mark was diagnosed with moyamoya almost 2 years ago to the day.  We were in a similar situation as you.  The Drs. here in Upstae N.Y. were great but haven't treated much of this in the past.  In fact we took Mark to 11 neuorlogists before he was diagnosed.  You're past that part.  An that is great news.  You know what you have and Dr. Steinberg is absolutely the right person to help you.  But let me emphasize something more.  You will meet the most wonderful, helpful, caring people in the world over the next few weeks.  I know you are scared out of your mind.  You have all the right to be.  But be encouraged by what you read here.  Everyone that talks here has gone through this and remembers every minute of every day on what they had to endure.  Not just from a patients point of view, but as a boyfriend, girlfriend, father, mother, husband, wife or a friend.  You have everyones 100% support and prayers.  That's first hand from a father that spent the many sleepless days with my son and wife.
  There is help.  Don't be afraid to ask.  Teresa is on top of everything.  And Jill is just a Saint.  If you don't know Jill's daughter Tara was diagnosed and treated just before our son was.  Her husband Campbell and Jill and Tara are very close to our hearts.  They were the first people we met and they gave us so much comfort and hope.  I'm sure you will meet.  And Chili's is the place of choice for gathering.  That's were it all started with DJ if I'm not mistaken.
  You will be under the best care in the world.  The Drs. and nurses are just outstanding.  You will come to know all by name.  We envision them frequently as we look back.  I'd like to hear your thoughts if you will share them after.  We kept a journal and took hundreds of digital pictures while we were there.  I wanted Mark to have memories of what he went through and for him to know he beat one of the rarest diseases there are.  We are glad we did to.
  So you do whatever you have to to get to Stanford.  Get treated, recover and get on with your life.  Hopefully your family can be there with you to help you through this.  You will need that positive support.  Most employers are very good about giving time off in these situations.  It doesn't hurt to ask.  What's the worst thing that can happen.  They will say no.  Any of us that have gone through this will be more than glad to speak with anyone directly to answer any questions.  People are not aware of this and need to be educated.  You need the three weeks.  You can Email anyone on this site to speak with them.
  Let me just reassure you.  You have gone in the right direction and will be in the best hands.  We didn't know were our son would be today.  He's doing very well and is back enjoying his life and doing everything a 24 year old should be.  You need to do the same.  Be as positive and optimistic as you can.

Best wishes and ask if you have any questions,
Ron, Lisa and Mark Rowland

Jeana, please never worry about your post being too long. The more we know, the better we understand your situation and can support you in a way that's best for you.

If you don’t mind, I’d also like to invite your hubby to come visit the website and meet some of these wonderful people who’ve been down that same path he’s on, whose dealt with the same obstacles and bumps in the road. Perhaps it may help him understand your situation better. Knowledge is power dealing with this rare disease. We all found this difficult road a little easier to travel once we knew where we had to go and why, and most of all, the importance of getting to the right place that's best for each individual case.

I would talk to Jill, if anyone can help you she will find a way or she’ll be able to guide you in the right direction. Incase you didn’t know… we all have a personal, private mailbox here. You just have to click on the members’ name (ID) that you want to contact privately and that will take you to their profile page and at the bottom of their profile page it will say, . You can discuss your main concerns privately if need be.

Stress isn’t good either girlfriend, so as Jill said, take one day at a time. You’re in all our prayers. Take one step at a time and you'll get there.

Mar

Hi Jeana,
I am glad to hear that you will be going to Stanford!  It all seems so very scarey and I understand how you feel with all your questions, keep asking them because that is the only way you will find out the answers you need! From my personal experience it went like this....my insurance paid for me and one other person to fly to Stanford and back, the only problem with that was that my husband could only come out for one week and I was told someone had to be with me during the three weeks that I was out there...luckily my family came to the rescue, my two sisters came out, one at a time for a week each to be with me the remaining two weeks..we had to pay for the flights for my sisters but we were able to get them pretty resonable from www.southwest.com, DJ has also started a travel company so you might try going throught that?   We flew into San Jose, CA then took a shuttle to the hotel, Michael the social worker can give you the shuttle information but it was like $40.00 one way to our hotel.  I am pretty sure we stayed at the Sky View ranch on the main street, El Camino, from where they are you can walk to a Dennys right by there and to the bus stop that can take you into the hospital, the front desk there was very helpful...Michael may be able to get you the apartment to stay in after the surgery so that you are closer to the hospital but that is not always a sure thing.  I found that the bus system out there is wonderful..it can get you anywhere you need to get plus the people out there are terrific, just ask anyone for information and they are helpful.  If you need more information I will be more than happy to help...dont worry I was asking questions like "where can I do laundry?" and "does the hotel have a refrigerator and blow dryer?"  so no question is stupid!!
You can personally email me if you like and I will answer whatever you need! 
Hugs,
Kathleen

Jeana,

I sent you mail on the number where we stayed at.  Here it is again: (650) 966-8848. Good Luck and God Bless.

Jim & Kathie

Hi Jeana,

It looks like you and my daughter Julie will be surgery mates.  We are going out Nov. 15th also and Julie's surgery is the 22nd.  So tell your husband he won't be alone, me and my husband  Ernesto will be there also.  We were given 2 tickets on southwest airlines.  They got back to me the day after we faxed them the paperwork and scheduled the flights.  They are just wonderful.  We are still hotel shopping.  Because there are 3 of us we can't stay in the dorm, and Ronald McDondald house won't confirm anything until 2 to 3 days before we go.  That just freaks me out, I'm a bit of an overplanner.  We are getting a rental car, so any rides around town that we can help you with, let us know.    Message me at my private box and I'll give you my cell number, so you can reach us if you need to.

I can't say enough about Dr. Steinberg's staff especially Jill, Theresa and the ladies in scheduling.  They have made everything so much easier.  What a comforting feeling to be greeted by a friend when you call the Dr.s office.  It's been soooo nice.

We will see you there.  Don't stress and know that you are in the best hands possible!!!

Cheri

Well it is offical I will be in California wednesday the 15th at about 7:30pm or so depending on my flight.  I really can't wait I just want to get this done with and get back home to my baby  ,  I am really gonna miss him.  Thank god that my hubby will be with me come monday.

I will be staying at the Pacific Inn in Mnt View thanks to the great advice from Islandentity(Mike).  Thanks

And I have better news yet my hubby won't be flying alone anymore my sister has decided to fly out and keep him company.  I am so glad I was kinda worried about that. 

Okay enough chatter, Can anyone give me so advice what to expect when  I get to CA.  We do have a rental car so that will help a lot.  I hope to meet Jill before I have to go in on monday so she can tell me what to expect at the tests and stuff, but other than that I will feel like a foreigner (lost). 

Well It is all in the hands of GOD now and we will go from there.

Jeana