Hi everyone,

I will be going Tues 16th to Miami at Jackson Memorial Hospital and having surgery on my left side.

Neurologist Dr. David Lee Gordon in Miami had referred me to Neuro Surgeon Dr. Roberto C. Heros.  He is the Professer and Co chairman of the hospital there.  He seems to be very knowledgeable about moyamoya.

It seems like it has taken forever to get this far with the process that you have to go through to get here.  I found out Aug 28, 03 I had moyamoya.  Six and one half months it has taken. 

Kathy

Hi Kathy -

All the best of luck through your surgery.  It took me about 6 months as well - 6 long months!  You are in my thoughts and prayers.  

-Shari

Kathy you will be in our prayers on the 16th and the days following. I'm so sorry that you had such a long wait.I know how hard the waiting is.For us it was unbearable at times.Kathleen   was diagnosed in Jan.2002 and wasn't scheduled for surgery until June2002.Unfortunatly she had 2 more strokes waiting but they did bump her surgery up to April.Praying for a successful surgery and quick recovery.
Mary Grace

Wow,

I am over whelmed with all the replies.  Thank all of you.
I hope I can keep you up to date.  My husband Andy is not a computer person.  I just asked him about doing that and he said "Me! I don't know how!"  Ha, Ha.      Maybe I can get my mother in-law or brother in-law to come over and get on my computer and do it.

Again, thank you for all your prayers and responses.  It is so great!!!!!  ;

Kathy

Kathy,
i wish you the best of luck. I learned that i had moyamoya nine months ago and just learned that i should have surgery my doctor told me i should not. This is one confusing disorder. my thoughts are with you!

babyblue

Babyblue,
              Who told you, you need surgery Dr. Steinberg?
That's what happens to alot of people they get told they don't need surgery then before they get a 2nd opinions they have strokes that could have been avoided. I wish doctors that don't know much about MM would admit it and send people to Neuro. guys who do know, my daughter was originally told to wait a year after having four strokes at once to find out from Dr. Steinberg she needed it in a month when her brain cooled down from the strokes. If you go to him your in one of the best set of hands out there for MM surgery he's excellent. D.J. the creator of this site has also had his surgeries there as have many others. I'm glad your on your way to getting the help you need. Our thoughts and prayers are with you.

Nancy-
my mom has contacted dr. steinberg and i am waiting for my paperwork to be sent to him so he can decide what is best for me. i agree the doctors who know little about mm should find someone who does. my doctor is a really nice man who seems to care about my health but i wish he would have atleast talked with someone who has been around mm patients. no hard feelings i am now on the right track and have friends here to help me. thank you.

Kathy-
i want to thank you for taking time to talk to me even though your about to have surgery. things are confusing but im doing alot better. again i hope things go well for you today. i know everyone will be thinkg of you.

babyblue

Anyone hear how Kathy is doing??

Janice

I hope we here from her soon.  ;

oh kathy good to hear from you and that you are doing ok, christy (babyblue) asked me other day if anyone knew anything about you,  i am so happpy to hear you are good. christy and i will be heading out to california on the 10th of april and she will have surgery on the 14th and then on the 21st. we are very nerivous or i should say i am that is the mom in me. but know we will be in good hands. thankful to dj and everyone else here who have shown us so much love and support so far. take care of yourself and rest that is what you need. keep us up to date and i will keep everyone up to date on christy when she has hers.

take care and rest
lots of love and prayers
diane(babybluesmom)

Hi Kathy,
Very likely the anesthesia caused your vomiting and diarrhea.  You might want to check with your surgeon to find out what was used.  Many people react that way, or worse, to the opiate drugs and derivatives.  There are alternative drugs that can be used - starting with Fentanyl.  Did your surgeon give you anything to try and control the nausea?  If not, why not? 

You were probably pretty well dehydrated as a result, and it will take time to get your system back in good working order.  Dont' forget a lot of fluids, including Gatorade or equivalent.
Hope this is all well behind you now and your recovery will be uneventful.
Best,
roni
rolsen6400@aol.com

Hi Kathy,

We are all glad to hear from you.  Everytime I went on this website I was anxious (as everyone else) to hear from you.  So glad everything is sort of OK.  you will get your strength back soon.   

Keep the faith. 

Janice

Kathy,
             I knew you could do it, just give it time you'll be good as new who cares how long it takes as long as you get there. Mandy threw up pretty violently after her first surgery also, and shes only 20, she did not however after the 2nd. We are still praying for you. Hope to here from you soon.
                               Nancy ;