Welcome Masonsmom, You came to the right place. You will get a ton of great advise from this site. I,m so sorry to hear about your diagnosis. I can't be of much help to you because I do not have MM. My 2 year old daughter does. She gets tired very easy. Normal tasks take a lot out of her. The only advise I have is to drink a lot of water and if you do feel light headed take a rest. I do think you may want to see a specialist on Moyamoya as soon as possible. I would not wait it out. You deserve the best treatment possible. I could not even imagine what you are going though being a mom and all. Hang in there. Dani

Masonsmom,
Sorry you had to come, but so glad you are here, There is no doubt in my mind that this site and the people that haunt the proverbial walls, in part saved my son from a serious stroke or worse, Robert showed more and more Fatigue as his situation worsened. Like Mar and Danille have posted seek out specialized and specific medical advice in regards to your specific Signs and Symptoms.

May I ask where are you from and where and by whom are the surgery(ies) to be performed by

Best wishes

Mike

Hello Masonsmom

Yup, fatigue can be linked to the lack of oxygen to the brain as well as stress as the surgery date draws near.

Stimulants, like coffee, are vascular constrictors. So be careful if you are feeling tired that you don't worsen the situation by having a little 'pick-me-up'.

Welcome to moyamoya.com. July 1st is very soon; good luck with your surgery and keep us updated.

Mark (Luca's Dad)

masonsmom,

I understand your anxiety and frustration.  There are things that you can do to stay as healthy as possible.  The first and most important is drink, drink, drink, lots and lots of water.  3 liters a day if possible.  Stay away from caffeine as much as you can.  Caffeine constrictis the blood vessels.  Secondly, get lots of rest.  You do not want to get too tired. 
I live in Illinois and was diagnosed at UIC in Chicago but chose to go to Stanford for treatment.  It was a hard decision but after several days of anxiety and an increase in symptoms I sat down with my family and we changed our game plan.  You need to feel comfortable with your surgeon and everyone else that will have a hand in your care.  Don't just think about the surgeon but also think about the anesthesiologist and nurses that will be caring for you.  How much experience do they have with moyamoya.  This is a potientially life thretening disease, you and your family need to feel compfortable with your entire health care team.  I know that when I fainlly made the decision to go to California I felt that a weight had been lifted from my shoulders.  I could take a deep breath and think, OK I can do this.  Everything is going to be just fine, and it was.  I work in health care and what I experienced at Stanford Hospital and Clinics was nothing short of miraculous.  I have never seen a better health care facility in all my life and I work at a hospital. 
There are other great hospitals out there and I have heard wonderful things about Loyola, we send patients from down state there all the time.  If you are feeling nervous then maybe you should at leas consult Dr. Steinberg.  You can send you discs over night and he will look at them as soon as he can. 
He was able to work me in within a week, my surgery date was actuall only delayed by 2 days.  I had 5 days to schedule my flight and make hotel arragments etc...  He will do anything that he can to help you. 
I know that you will make the best decision for you, the important thing is that you try to decrease the amount of stress in your life.  I know that it sounds rediculas, but feeling comfortable with the health care that you are receiving can help a lot. 
There is also a good surgeon in Cinicinati that treats MM.  He just does not have as much experience as Dr. Stgeinberg but is getting more and more each month.  He presented at the moyamoya symposium earlier this month at Stanford. 
Hang in there, you have an entire support system behind you.  My thoughts and prayers are with you.   I was in your shoes just a couple of months ago. 

Tracie

masonsmom,
Welecome to the MM family. I had the "lay the tissue or muscle over the brain to grow new blood vessels" and the STA-MCA direct bypass. If this neurologest is not giving you answers to your surgry then i strongly sugesst calling Dr.Stienberg. I don't not want to say don't do the surgery but you may need to have another surgery after. My Nuerologest explained everything extreemly well so both my mom, my husband and I were very happy that we knew all the risks and benifits of the surgery. My Neurologest was a MM expert, not as good as Dr.Stienberg. For any surgery you should know what they are doing, what are the risks during surgery, waht are the risks of not doing the surgery, How long they think it will take you to recover, what make this surgery better then that surgery, and I going to have to have my whole head shaved, ect. Since I was told all of those questions and more I was couldn't wait to have the surgery done. This sight helped me in reasuring me my neurlogest knew his stuff and if i needed to look up so I could tell the rest of my family i had visual aids. Please keep us posted with any progress.
I wish you all the best,
Becky ( I was 22 when I was diagnosed and had the surgery they did both at the same time.)

Send your images to Dr Steinberg overnight. He will respond before your surgery date and then you can make an informed decision.

Personally, I wouldn't accept a Dr I don't feel comfortable with or don't know of his moyamoya credentials.

There is no right or wrong way of doing this, it's all up to the individuals situation. Whatever you do is the correct thing for you.

Good luck and keep us updated
Mark (Luca's Dad)

masonsmom,

Take a deep breath and know that everything is going to be OK.  There are so many wonderful people on this web page that are here to help you get through this.  I know that it is very overwhelming.

First of all, yes I have had the fullness in the ear feeling.  Not sure if it was related to the moyamoya or not, but I have had it in the past.

Secondly, if you decide to go to California for treatment, going alone is not really a good option.  You will need someone with you when you leave the hospital.  Usually they want you to stay for 10 days to 2 weeks minimum, and that is only if you are having one surgery.  If you have to have surgery on both sides you will need to stay longer. 
You will only be in the hospital about 5 days after each surgery, so you will need someone to stay with you at the hotel between. 

Thirdly, I would recommend that you talk to your family about how you are feeling.  If you are uneasy or unsure about the surgeon or hospital then you need to discuss other options.  This is not a surgery to be taken lightly, you are going to need the help and support of your family. 

Lastly, There are other physicians that are experienced with moyamoya.  There is one in Cincinati and one in St. Louis.  You can always check into either of them.  If staying closer to home will make things easier for you and your family you may want to check out some of the others.  Try to keep the stress level as low as possible, stress can increase your symptoms.  That is why it is so important that your family give you as much support as you needed, and respect your decisions. 

Take care and we are always here when you need us. 
Did I read on one of your posts that you are from Illinois?  If so then where in Illinois.

Tracie

Christie,

I am from Danville Illinois along the Illinois Indiana boarder, just 40 minutes from Champaign Urbana in the central part of the state. 
Where is dallas City?

Tracie

Christie,

Yes, I am very familar with Mattoon, it is only an hour or so frim my home.  Several of my daughters friends go to Eastern and one of our "adopted daughters" is in school there.
Yes, I was planning on going to the reunion when theya are able to set up a date. 
If you would like to get together sometime just let me know.  There are several MM people in Illinois, we could all get together later this summer or in the fall.  Maybe somewhere central like Springfield. 
Take Care.

Tracie

Hi Masonsmom,

Same here I'm new with MMD family, I was diagnosed last year August 2008 with MMD. I dont have my surgery until now, but right now I'm feel okay although theres sometime headache but my doctors told me its normal in our case with MMD.   I feel sorry for you too, but let my prayers hand to you and all of us who have it.  Mar is right just be strong and you can make it.

God Bless on your surgery and give us feedback of your operation.

Regards,
Betty :)