Well I haven't been on in a while, I check in and read a bit once in a while but I need to be back on. Mandy has been having dizzy spells so they sent her for an M.R.I. and a spec scan as she has not had any testing in 2 1/2 yrs. after the reults they ordered a non invasive angio where they shoot the dye and just take some pictures of the brain it only takes 10 minutes. The results were complete blockage of her left graft  her sta-mca surgery which as we all know controls her right side which is her good side don't it figure >:(. I have been in contact with Teresa at Stanford, they are going to give her conventional angio and see if there are any doner vessels. Jolie just called in the middle of me posting and said we could have the angio at Emory so we're waiting for a call on an appointment. She said the angio is the only way to see if it is really truely a complete blockage. This sucks.....this disease has a way of keep on giving. I can't believe this is happening AGAIN its been 3 years. My head is spinning with all this, her other strokes were on Dec. 27th 2002 same time of year like dejavue (sp).  I'll keep you posted please say some prayers for Mandy we need all we can get.

Hi Nancy,

I am so sorry that you and Mandy have to go through this again.  Keep me posted.  Mandy is always in my prayers, because like my sister Patty, each day is a challange because of mm.

Keep the faith.

I plan on seeing Mar next week.

Janice

Nance:

I'm so sorry to hear about Mandy.  I read your post and just started dribbling tears.  Please know that my thoughts are with Mandy, you, and your family.  I pulling for you all, and am confident you all will come through this difficult time.  

Best wishes and lots of hugs,
Trina

Hi Nancy,

I don't want to believe this is happenning to Mandy again either. I know how hard you and Mandy have worked moving forward and all you both have endured in the last 3 years.  As Janice mentioned, many MMers  face challenges everyday; some more than others.

Mandy and Kevin have had to overcome a lot.  They are both troopers and both have worked hard to move forward. I will continue to Keep Mandy in my prayers.            

Please keep us posted on Mandy's test results.

Stay strong and keep the faith and know you are both in my thoughts and prayers.

Hugs,

Lore



 

Thanks for all your support, we reallly appreciate it. Mandy's Angio is scheduled for Dec. 28th....today wouldn't be to soon for me but what can you do. We'll keep you posted.
                       Nancy

Nancy,It appears your living my worst nightmare.I'm so sorry for you both to be going through this.This week will probably seem like a lifetime for you guys the waiting is just so hard.Kathleen's first signs of MM was at Christmas time also.(although I had no idea what was happening at the time)I don't think those memories will ever go away completely.I will keep you all in our prayers.Please keep us posted.
Mary Grace

:-[

    Hi Nancy,  This news really sadened me, especially at this time of year.

I mentioned Mandy's name and situation at my weekly prayer group ane we said a rosary in her name.  Mandy will remain in my prayers and I'm sure that Dr. Steinberg will take excellent care of her.
    For what it's worth Nancy even though this really sucks, you now have the advantage of knowing where to go, who to see and what to do.
   
   Keep your chin up I'm sure that when the smoke clears Mandy will be fine.


    Tom G.

Nancy-

Im am so sorry to hear about Mandy. I know this has too be hard time with the holidays and you are all just adjusting here in GA. Please let me know if there is anything that i can do for you because i am not far away. I would love to help even if you just want to talk. I will keep Mandy in my thoughts and prayers! Please keep us updated.

[smiley=heart.gif]Christy

Nancy,

My [smiley=heart.gif]goes out to you, Mandy and your family.  I know this isn't the type of news you'd like to hear, especially during the holidays.  Please know that Mandy is in our prayers.  We know that you will do whatever it takes to get her the best care possible.  

Please keep us updated on how her angio goes.  You know that we're here for you!  Give her a big hug from all of us. [smiley=hug.gif]

Take care,
Shan

NANCY,
        MANDY IS IN OUR PRAYERS.
                                      RHONDA AND DANNY

Well we've decided to go to the best..........Mark and Mandy are flying out to Stanford on the 26th day after x-mas to be at clinic on the 27th get the angio on the 28th and fly back on the 29th. I fell a whole lot better going to Dr. S. we've had some mess ups so far at the other hospital so we're going to the top dog. I can hardly wait for the results we'll keep you posted. Thanks everyone.
                     Nancy and Mark and Mandy [smiley=hug.gi

Hi Nancy,

Great News!!!!

I know exactly how you feel about getting Mandy to Dr. Steinberg. I have had one problem after another here with trying to get a neuro to even look at Kevin. When I say moyamoya and they say what? I move on.

I was hoping to get Kevin treated locally but to no avail. We too will be traveling back to Stanford soon (don't have exact date yet).

I know you will rest easier now that you know Mandy will be with Dr. Steinberg.

I too am anxious to hear what Dr. Steinberg says.

I will keep you all in my thoughts and prayers and will keep watching for Mandy's results.

Merry Christmas to you, Mandy and Mark

Hugs,

Lore

Nancy,

I wholeheartedly stand by your decision!  I will be having my 1 year angio follow-up in May, and I'm seriously considering flying all the way from Hawaii back to North Carolina just for the angio...just to be closer to my neurosurgeon!  My local neuro says that I can just do it here, but I think I may just make the travel....  It's also been suggested that we see Dr. S since he is on the west coast.  Lots to consider, but I here you and just wanted to let you know that I stand by your decision for Mark and Mandy to make the travel....  Please let us know how she does.  Mandy and your family are in our thoughts and prayers...

Take care,
Shan

Mark and Mandy are on they're way I can't wait till its over. Thanks everyone for your well wishes and kind words, thanks Jill for everything you do, your the best. We'll keep you updated. Keep them prayers coming  :).
                          Nancy

Nancy -

You are on my heart and in my prayers, as are Mandy and her dad.  Can't wait to hear how all goes - well, I hope.  

Love and hugs,

Cass in Texas

Hello Nancy,
  Mandy, you, and mark are in our prayers. I hope the angio results are more positive for Mandy.
              Lena.........

Dr. S has decided  to do all the tests over again the M.R.I. the spec scan and the angio she will have all three today and tomorrow the other half of the spec, they are coming home a day later so she can get the spec. Its for the best incase the other tests are not real clear that would stink after they went out there and came back already. Dr. S and Teresa put the doppler on her grafts and said he could here them both so he is hopefull that the left is open.......I pray. What a way to start the new year that would be huh. Let ya know what happens. Sorry I'm nerves I'm rambling.
                       Nancy
                       

Hi Nancy,

To be nervous is very understandable.

Sounds very promising since Dr. Steinberg could hear the blood flow with the doppler. I will continue to keep you, Mark and Mandy in my thoughts and prayers and I will pray that Mandy's graft is open.

I am anxious to hear the outcome and will wait for your next update.

Hang in there and keep the faith.

Hugs,

Lore

Ya HOOOOOOOOOOOOOOOO!!!!!!!!!!!!! the graft is wide open Thank the Lord, I am exstatic Mark called about a half hour ago and Dr.S. said its more open than before Whuuuuu! I am freakin out I'm so happy, Jill of course was there for Mark which I am so grateful for she had them to dinner last night too, what an angel she is. They don't know why she has had a few dizzy spells but they said it could even possibly be vertigo cause she always says the room is slanted when she gets dizzy. She could just have been not hydrated enough who knows I am just so happy that poor kid doesn't have to go through surgery again. Thanks so much for all your prayers it helped obviously. I will sleep great tonight.
                            Nancy [smiley=sayyes.gif]

As happy as I am, I still have to say, this is a prime example of why we always advise a MM specialist. The doctors’, who saw Mandy in Georgia, said they were experienced with moyamoya, yet they said she had a severe (100%) blockage on one side, and scared us beyond words. If they had more knowledge about moyamoya the disease and more experience with the surgeries performed, none of this would have happened. This was a simple case of lack of the proper knowledge and experience with MMD.

This whole experience certainly humbled me, and gave me even more respect and appreciation for Dr. Steinberg and his staff. Teresa is just wonderful! They all know their stuff and sure were good to us. God love em! They’re the best!

I want to thank Jill and her family as well, from the bottom of my heart.

Mar

AMEN!!

Thank you so much for sharing the great news, Nancy!  Yes, I agree with Mar wholeheartedly!  This is a prime example of how important it is to see a MM expert!

Praise God!!!

Take care,
Shan

I AM THRILLED to hear the good news that Mandy is doing just fine.  THANK GOODNESS!  Nancy, Mark, Mar, and Mandy - you have all been in my thoughts and I will continue to keep you in my thoughts.  I'm going to go have a glass of wine, just for you guys.  ;)

Trina [smiley=thumb.gif]

Nancy- I am so happy to hear the good news! I hope that you all can have a good new year now. You are all in my thoughts!

Mar- I can tell you from personal experience that the doctors here in Georgia dont know much. GA is where I live and was diagnosed and if it was not for me coming across this website I would have no clue about surgery and would have never had the chance to get help from a real MM specialist. If i need anything dealing with MM i call Dr. Steinberg's office and then tell the doctors here in GA what to do!

[smiley=heart.gif]Christy

Nancy,

Your joyous post brought the tears right back to my eyes.  I've been home just a short while (had a great happy cry as I drove), and was thrilled you've let everyone know your fantastic news.

Thank you for sharing your family with me, Campbell and Tara.  It was our privilege to spend time with Mark and Mandy, and to get to know them.  (Wish you could've been here too, but under different circumstances!)  You guys are a very special family, and I will remember today always.  We would've done our best to pull you through news that wasn't great, but today brought news that was just indescribably wonderful.  As Mar said, the experience was humbling.  I'm so happy for you all!!!

Thank you again for letting us be part of their return-to-California experience, and I'm looking forward to spending some fun time with you in Orlando!

Lots of love,
Jill

Nancy, that's absolutely great news. Am so happy for you all. I tried responding to your first post in the thread but when the computer lost it, I thought it was probably a blessing in disguise due to that fact that I was also worried about my own dizzy spells therefore it probably would not have made you feel any better. Now that you've posted your great news, I feel more at ease (from my own selfish perspective). I went through a few months (April-June/July) of having dizzy spells then it stopped and I was dizzy spell free right up until exactly two weeks ago when I had another one. My boyfriend thinks that I may have fainted with this one as I went very floppy - he actually caught me before my head hit the doorframe and floor. I'm hoping it was just a one off - I was very tired and had worked late the night before. An ear specialist has said it's definitely not my ears and I had an MRI/MRA done in August which was 'normal.' (I had my sugeries done in 1996). My neurologist seems convinced that it must be my ears and said that if the dizzy spells return then he wants me to see his own "dizzy" specialist. I haven't told him about this episode as I'm hoping this last one was just a one off. Sorry for the long post but I just wanted to say that I am really happy and glad for you all and thank you for sharing this news as it has personally helped me too.

Best wishes,

Roz

Nancy,

I'm so happy for Mandy right now that I could cry.  But they are tears of joy!!!!  I've been thinking about her and praying that everything would go ok.  The Lord works in mysterious ways and has worked his magic on Mandy!  :)   I'm glad that she had a chance to meet with Jill's family at her house for dinner.  I know that she was having some sort of steak that my brother absolutely loved when he was there.  Take care of yourself and give Mandy a big hug for me when she gets home.  

Michelle

Hi Roz,

In regards to the dizzy spells, we still have no idea why Mandy got them, but thank God it isn’t from a blockage. Nancy is still trying to figure out why and keeping a close watch. We discussed perhaps she wasn’t as hydrated as she should have been when she experienced those dizzy spells. It’s so important to make sure you stay hydrated. We also thought perhaps it was her blood pressure, so Nancy invested in a blood pressure machine, to at least keep track of her pressure to get an idea if her blood pressure changes or lowers, and see if that could possibly cause them.

They were just some thoughts we had on it. Please don’t feel as though your thoughts were at all selfish! We’re all in this together and learning and supporting one another along the way. I sure hope you don’t experience any more, they can be scary. Take care and don't work so hard...lol.. Please know you’re in our thoughts and prayers as well.

Mar

Hi Nancy,

HALLELUJAH! HALLELUJAH! HAL LE LU JAH!!!!!!

I can hear the excitment, joy and relief in your words. I am so overjoyed I can barely type. It's real hard to type when one is jumping up and down screaming YES! YES! and singing the Hallelujah chorus! [smiley=laugh.gif]

Love that Dr. Steinberg and Teresa!! Dr. S continues to reign as The King of Moyamoya and Teresa continues to reign as the Queen of Moyamoya!!! [smiley=heart.gif]

Happy New Year to you, Mark and Mandy!

Wow!! I'm still overwhelmed by Mandy's great news!!

(Picture fireworks and balloons since there are no such objects on the smiley board that I can insert) [smiley=laugh.gif]
 
Hugs, [smiley=hug.gif]

Lore

 

Hello mar, Nancy mandy,
I'm soooooo... happy for your family and that the test results were in a positive direction!!! I also have been having dizzy spells for a few weeks on and off. Also, go for MRI's on Jan. 4th  also see a ears,nose,throat specialist and do a test called a eng. To check the inner ears. They want to see if it has something to do with the mm or inner ears.
           Great news for your family!!!!!  Lena.....

Hi Mar,

Thank you for your reply. I'm so grateful for this site - I really am.  :)

With regards to blood pressure, I had a 24hour BP monitor test done back in August/September 2004 following some slightly raised readings whenever I visited my docotrs. All my readings turned out to be in the normal range apart from those following taking a decongestant that I no longer take. That said, I do know that low BP can cause dizzy spells.

I would be interested to know what Dr Steinberg concludes in Mandy's case. I have no idea what is behind my dizzy spells, although having noted each one down in a diary, I have noticed that being tired doesn't help. In the meantime, I hope that whatever is causing Mandy's (and Lena's) dizzy spells goes away. I know how scarey they can be - the slanty room sounds very familiar. When I'm a bit unsteady, the room slants but when I have a bad one, the whole room spins. It can make you feel a bit sick too.

Hope you all had a lovely Christmas and Happy New Year to you all.

Roz

Nancy, Mandy, Mark and Mar -

YAHOOOOOOOOOOOOOOOOOOOO!!!!!!!!!!!!!!!!!!!!!

This is just the best news ever for y'all - and for all of us in your mmd family, too.  I have been praying for Mandy ever since I read your post, Nancy, and what can I say - prayer - and Dr. Steinberg and Teresa - works.  

Have a wonderful New Year - I know you will now.

Love and hugs,

Cass in Dallas