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,  [smiley=wave.gif]

[smiley=wow.gif]...That's so upsetting to think you waited 6 months for your surgery. The waiting had to be daunting, God bless ya! Good to know you're in good hands. Please know that you'll be in my thoughts and prayers.  [smiley=hug.gif]
Please keep us posted.

Mar

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. [smiley=wave.gif]  

-Shari

Good luck on your surgery.I'm sure it will turn out good.We find out Jennifer had MM in Jan. and the surgen let her wait until she finished her senior year.She had both her surgeries in Aug. of that year.
Carol

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

H Kathy,

My sister Patty has mm and had her surgeries about one year ago.  We will keep you in our prayers.  Go Girl.  
we will be waiting for news.  Maybe you can have a family member or friend keep us up to date on this website until you you are able.

                     Janice



 

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.   [smiley=laugh.gif]   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!!!!!  ;;D

Kathy

Hey Kathy,

We will all be thinking and praying for you on Tuesday!  Please let us know how it goes when you have the chance to get back on the board.

Be well!

DJ

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,

Just wanted to drop a real quick line.  Please do not get any confuser than is needed.  Anything else just take your time at and go real slow at until it is comprehinded and even if it takes until next week or next month.  There is no fast bodies around in me so I just take it day by day until I get things.

Thank you so much for your reply.

This here took me ten minutes to type up or more.

Kathy

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. :)

Kathy,
              Good Luck I will be thinking about you today! Our thoughts and prayers are with you. Can't wait to here from you.
                              Nancy [smiley=hug.gif] :D

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

;;D Kathy:

I am thinking of you today, and the days that follow. I am sure you'll do great.

God Bless you! [smiley=wink2.gif]

Sara

Anyone hear how Kathy is doing??

Janice

Hey DJ,

Is there anyway to find out is everything went OK with Kathy's surgery??

Janice

I hope we here from her soon.  ;;D :D :)

Hey everyone!

Sorry I have not been able to contact you.  The surgery went really well but I only just got home last Friday and only been sitting up at home 4 to 5 days weak as a kitten.  The anesthesia or something made me deathly sick pucking up green vile from both ends.  I lost about ten pounds.  Finally able to eat a little and hold it in both ends.  Sounds funny I know but really it is a life threating ordeal when you can not eat.

I will write later when I get more strength.  Just wanted to let you know surgery went really well.

Kathy

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!

So good to hear from you! I think we were all a little worried about you though knowing it usually goes well.
I understand you are very weak and tired, it is a big surgery, don´t forget that. When we read about all the kids (including my own) getting up a few hours after surgery and running around a few days later remember they are kids and you are not. So rest a lot, take care of yourself and be sure we are all thinking about you!

Annica  ;)

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,  [smiley=wave.gif]

So glad to hear the worst is over. We have been so worried about you. It breaks my heart to think that you got that sick from the anesthesia.  [smiley=youknow.gif]  You're the first one yet that I know of, that got that sick after this surgery. We are so proud of you for your strength and your courage. Thank you for taking the time during your recovery to keep us updated. You just get strong and symptom free and come back as another success story, so the others will gain strength from you and your spirit.  [smiley=hug.gif]

You're in our prayers

God bless,
Mar

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

Hi Kathy -

So glad to see you are home and on your way to recovery.  I also got sick - but Dr. Scott had put me on morphine right after the first surgery.  I think that is what made me sick...and I swore the anti-nauseant drugs they were giving me made me more sick.  After the second surgery I asked them not to put me on morphine - only tylenol and I handeled that much better.  Take you time to recover.  I think I was out of work 5 weeks - and when I went back it wasn't full time.  (And I filled up on Ben&Jerry's ice cream to gain my weight back!!).  Good luck and I hope you feel better real soon!!

-Shari  [smiley=hiya.gif]

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 [smiley=hug.gif] :D ;) :) ;;D [smiley=laugh.gif]