It's been a while since I have posted anything lately to this site.  Looks like I will have alot more to talk about now.  As many of you know Wednesday I was diagnosed with bilateral moyamoya by Dr. Steinberg(I am sure my spelling may be wrong), ask my sister my spelling is much to be desired.   Anyway, this came as a pretty big shock to me.  I honestly thought if anything I would have it on one side but not the other.  How ironic a year from when Michelle my sister was diagnosed with mm as well.  I would be real interested to know how many known cases of family members have been affected with mm.  And how many have been treated by Dr. Steinburg.  For the most part I feel I have been pretty postive about everything.  Of course there have been some times I feel I am still stunned thinking why me.  But deep down I know there is a reason that god must have a plan for me with this.  If helping someone else with the same problems I gladly take that on.  I also have some periods where I get sad but I guess that is to be expected.  I do take with me lots of positives mainly since my sister was diagnosed its helped me know the signs to look for.  But I know things are going to be ok, I have faith, family, friends and loved ones, and lots of prayers from my mm family as well.  We found out today it looks like my first surgery will be on November 9th.  Another ironic thing my sister had her surgeris November 10th pretty ironic though.  Well I will talk to everyone later and things for all the well wishes

Shane

Shane, I just visited my friend Monica yesterday at Stanford--she had surgery by Dr. Steinberg and is doing great.  I also met another MM patient there who had both sides done and she also looked terrific.  I'm sure you know you couldn't be in better hands.

A doctor once told me that "everyone has something, but not everyone knows what they have."  Well, you're one of the ones who knows what you have -- and you can take it from there!  Good luck with your surgery!

Debra wrote on Oct 1^st, 2005 at 3:12am:

A doctor once told me that "everyone has something, but not everyone knows what they have."  Well, you're one of the ones who knows what you have -- and you can take it from there!

Great point, Debra!

Shane, you are very fortunate to have your sister leading the way for you.  And Debra's right - you couldn't be in better hands.  Please know that we are hear for you and praying for you!  November 9th will be here before you know it.  Trust me, the waiting is the hardest part.

Sending  [smiley=hug.gif] from Philadelphia....

-Shari

Shane,
          I know this really sucks [smiley=frown.gif] but to put a positive twist on it your right, at least you knew from Michelle what signs to look for because you could have not seen the signs like we didn't with Mandy and have your whole life pulled from under you. You have a good additude and I think you realize just how lucky you are. Don't get me wrong it still bites, but you know what I'm saying....certainly not making light of it. Dr. S is the best as you know I'm sure you'll do fine. Good Luck!!
                             Nancy [smiley=hug.gif]

Shane,

It was  [smiley=heart.gif]breaking to read Michelle's post letting us know that you too have been diagnosed with MM, but nonetheless, you are fortunate to be blessed with the background and experience to recognize the symptoms, and the knowlege to seek medical attention when you did.  As Shari mentioned, Nov 9th will be here in no time.  Try not to worry...relax and take it easy.  I know, I know...last week's Cowboys game vs. the 49ers didn't make things easier either... [smiley=oops.gif] (can you tell I'm a "loyal" 49er fan?  ;) even if they aren't the greatest this year...and even without TO ;;D)  hee hee  [smiley=laugh.gif]  

All joking aside, please know that you've got a bunch of us here thinking and praying for you!  I too used to ask "why me?"..but I was told that I should try and ask "Okay, Lord...for how long?"  Keep your spirits up, Shane...We may not know why..but things do happen for a reason...and your are in great hands. ;)  

Although I've never personally met you, from others' posts, you sound like a wonderful, caring and kind person! Boy do I wish we had you waiting with us when I had my surgery!  ;)

Take care,
Shan  
[smiley=hug.gif] from Hawaii...

Shane,

I have been thinking about you daily since I read Michelle's post about you being diagnosed with MM. I'm so glad to see a post from you.  :)

One thing is certain. You know what to expect and you know Dr. Steinberg will take good care of you.  Since you went through this with Michelle, you have an edge over most others. You are familiar with the hospital, Dr. Steinberg and the process.  I believe that is a big plus.

I was very surprised to hear you were diagnosed with MM and having surgery almost one year from the day Michelle had her surgery. The whole thing is simply odd because it is so rare to hear of both siblings having MM and it's just overwhelming. I'm sure the thoughts of having MM are in the minds of many siblings.

As far as I know, I don't have MM like Kevin (Cubbie).  However, we had an older brother who died suddenly almost 2 years ago.  He had a heart attack and they put stents in but what seemed odd to me, in retrospect, is the doctor said he opened his arteries and nothing was there but his arteries kept collapsing.  Perhaps it had nothing at all to do with MM.  It was like his entire body simply shut down. Since he died prior to Kevin's diagnosis with MM, we will never know if he may have had MM.  I'm certain they did an angiogram and there was no mention of MM vessels.  However, not many in this area know about MM even today. So it remains a mystery.

Shane, God does have a plan for you and all of us. You have a positive outlook. You know you can look at this as "the glass is half empty or the glass is half full". It's your choice and I know it is easier said than done. As you are aware, I am a kidney cancer survivor. When I was diagnosed with kidney cancer I oscillated through all kinds of emotions and I too asked why me? The cancer diagnosis humbled me greatly. Perhaps that was a lesson I needed to learn in a big way. I also was not a very patient person. I have worked very hard at trying to be a more patient, caring and loving person. Of course I like to say God gave Kevin to me after our mother passed away to teach me patience. lol  [smiley=laugh.gif]

I too got depressed and it wasn't until I saw the movie Shawshank Redemption and Morgan Freeman said "you can get busy living or you can get busy dying" that I realized he must be talking to me and I made the choice to get busy living.  We are never promised tomorrow. I am a firm believer we should live each day to the fullest, as though it were our last. You have a much more positive attitude about your MM diagnosis than I did about my cancer diagnosis. It is natural and expected to go through all kinds of emotions like you are experiencing when being diagnosed with a rare disease. When I was diagnosed with kidney cancer, at that time, it was unheard of in a women. I felt like I was alone. Today, kidney cancer in women has increased 600%. I like to say I was the one female who opened the door for those who followed to have a chance at surviving,  I was a guinea pig!  You are focusing on the positives.  My hat goes off to you for that.  It's not an easy thing to do. So keep those positive thoughts.  You have a lot of people supporting you and praying for you.

You are a sweetheart and a very caring person. I know you will do fine and this time Michelle gets to take care of you.  Wow!! Just think of the possibilities! You can milk it for all it's worth! lol  [smiley=laugh.gif] Don't tell Michelle I said that. lol

I still remember you sitting with me through Kevin's surgery and being there for me and getting me coffee.  I wish I could physically be at Stanford with you and Michelle. Although I can't be at Stanford, I will be here to support you both.  You know, Kevin has to go back to Stanford for follow-up.  If I can get it arranged for when you are there, I will certainly try.

Shane, stay strong and please let me know how you are doing. If there is anything I can do for you or Michelle, please don't hesitate to let me know.

You are in my thoughts and prayers daily.

Love and hugs, [smiley=hug.gif]

Lore and Kevin (Cubbie)  

Shane-
I remember the day I met you...in the waiting room while Michelle was in surgery.  You got tears in your eyes talking about your sister and it was so obvious how much you love her and how worried you were.  I know that she has the same love for you and your MM family will offer all the love and support that we can as you get through this roller coaster ride.  Hang in there!!  You have seen that waiting can be the hardest part.  November will be here before you know it and you can start healing.
Big, big hugs~
Chelsie