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Runity

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I was diagnosed with MM
since May 26, 2005

Posts: 40
Brentwood, USA, usa, 392, 195, TN, Tennessee
Gender: female

Second surgery on the same side !!
Feb 1^st, 2006 at 9:51pm

Hi everyone,

I just heard from Dr. steinberg's office that I am going to have to undergo revasculization of the arteries on the same side as my first surgery in July 18, 2005. I had surgery on my right side. From the tests done in December 2005 it shows that the procedure done the first time is not maturing.

Most of my symptoms have come back. My headaches are worse and I still am very sensitive to light and sound. I also have black outs too. Has anyone else had them too. They are acturally called ischemic spasms. The neurosurgeon here in Nashville thought I have been having epileptic seizures because i still get numbness and tingling in my right and left hand.

I saw the neurologist today and he said that my ischemic spasms (black outs) are due to my moyamoya. Has anyone else had these symptoms too. I also get dizzy at times. I am going to have an EEG done tomorrow Feb 2, 2006 to see the brain activity in my brain while I am asleep.

I am schedules to have my set of tests at Dr. Steinberg's office March 13, 14, and 15. I then after that will find out when the revasculization will occur. I am going to be in Stanford for a total of three weeks. Even though I had one surgery I am scared , nervous and anxious at the same time.

Just wanted to let evryone know. I need losts of prayers!!!

yassi

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gotchlorine

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Our daughter, Tara, lives
with MM

Posts: 776
San Jose, USA, usa, 24, 158, CA, California
Gender: female

Re: Second surgery on the same side !!
Reply #1 - Feb 2^nd, 2006 at 12:49am

Hi Yassi,

Yay, that's great news that you have a plan of action!!!! I think sometimes that the hardest thing is not knowing the course you'll be on. Well, you won't be sorry about coming to Dr. Steinberg - you'll be in the best of hands with him and his team at Stanford.

We'd love to meet you while you're here, and would very much like to offer you and your family whatever support we can. Will your parents be coming with you?

I'm sure, as you said, that you feel scared, nervous and anxious. Neurosurgery isn't something anyone wants,and I won't begin to minimize the gravity of it. It IS very scary! However, I hope you can take comfort knowing that the treatment of MM is commonplace at Stanford. I sometimes think that Dr. S could do these surgeries with his eyes closed!

Anyway, I'd love to talk further with you. Maybe we can hook up on the phone prior to your trip to California. Please don't hesitate to keep asking questions . . . you will definitely be in my prayers.

Smiley

Jill

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Emily Senior Poster Offline Diagnosed Oct 2005. Direct bypasses: Nov 05 Apr 06 Posts: 259 Brisbane, Australia Gender:	Re: Second surgery on the same side !! Reply #2 - Feb 2^nd, 2006 at 6:17am hey i dunno what to say.... but good to see you're on top of it.. best of luck! xoxo
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Runity

New Poster

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I was diagnosed with MM
since May 26, 2005

Posts: 40
Brentwood, USA, usa, 392, 195, TN, Tennessee
Gender: female

Re: Second surgery on the same side !!
Reply #3 - Feb 2^nd, 2006 at 1:50pm

Dear Jill,

Thanks Jill for your message. At this point my family can use any type of support you can give us here at home and at Stanford. You can reach me on my personal e-mail Runity@aol.com. My parents have so many questions that I cannot begin to write them all down.

My family will be coming down with me. My mom is going to change her patients around so she can come down and stay with me for three weeks. Unfortuantely, my little sister wont be able to come. My father will join my mom the week of surgery. This is the plan for now.

I would love to meet you also. It would be great for my family to have someone to be in contact with while they are with me in stanford.

Thanks for your support,
yassi Smiley

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Shan

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MM Survivor ~ May 27,
2005

Posts: 849
Honolulu, USA, usa, 376, 346, HI, Hawaii
Gender: female

Re: Second surgery on the same side !!
Reply #4 - Feb 2^nd, 2006 at 2:11pm

Yassi,

I want you to know that you have all of us behind you. You have overcome this bump in the road in the past..and will definitely steamroll over this one too... Wink

(sorry if my analogies are a little corney today). Anyway, I am just grateful that they know what is causing your symptoms and that there is something that can be done about them. It's also good to know that your mom and dad will be able to be there with you. You are in good hands, Yassi...

Stay strong Yassi...and please know that you'll be in our prayers. Please let us know if there's anything we can do for you. Keep us posted...

Take care,
Shan Smiley

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« Last Edit: Feb 2^nd, 2006 at 2:13pm by Shan »

"Love, Accept And Respect All Things And All Situations In Life … They Are Especially&&Designed For Your Personal Learning" ~Howard Willis

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Runity

New Poster

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I was diagnosed with MM
since May 26, 2005

Posts: 40
Brentwood, USA, usa, 392, 195, TN, Tennessee
Gender: female

Re: Second surgery on the same side !!
Reply #5 - Feb 3^rd, 2006 at 11:05am

Hi Everyone,

Good news I heard from the neurologist this morning. My EEG is normal I don't have epileptic seizures. This doesn't mean I don't have black outs. Just at the time of the test I didn't have any episodes. The doctor still thinks I have ischemic spasms and that should go away after surgery.

Still cannot drive till after surgery number two. This is safety on my part and the other drivers.

yassi

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Seachelles Old-Time Poster Offline God never gives us more than we can handle. Posts: 681 Fredericksburg, USA, usa, 474, 157, VA, Virginia Gender:	Re: Second surgery on the same side !! Reply #6 - Feb 3^rd, 2006 at 11:42am Yassi, I just wanted you to know that I will be thinking about you and praying for you and your family while you go through tests and surgery. I know all of this is overwhelming, but you will surely make it through. You will be in the best care (IMO) and in capable hands (IMO) with Dr. Steinberg.
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tomg Experienced Poster Offline West and wewaxsation at wast. What I crave. Posts: 216 HowellNJ, USA, usa, 499, 119, NJ, New_Jersey Gender:	Re: Second surgery on the same side !! Reply #7 - Feb 3^rd, 2006 at 12:02pm Hi Yassi, Don't worry, you got all the prayers you need here. You're in the hands of one of the best and I'm sure he'll know what you need and get you through this. By the way Yassi what type of surgery did you have first? Direct or indirect bypass? Keep your chin up, you'll be fine, Tom G.
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cass/kate

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Daughter Kate has moyamoya.

Posts: 247
Dallas, USA, usa, 270, 251, TX, Texas
Gender: female

Re: Second surgery on the same side !!
Reply #8 - Feb 3^rd, 2006 at 1:58pm

Dear Yassi -

I'm so sorry you are going thru this difficult time, but I agree with Jill that you couldn't be in better hands than Dr. Steinberg's. You have all our prayers and positive thoughts.

Which brings me to this. We will be at Stanford the same week in March as you ! Kate, our daughter with MM will be having her 6-mth check-up and battery of tests that week, and we would love to meet your and your family and lend whatever support we can. We will be staying at the Skyranch Motel on El Camino Real Sun, Mar 12 thru Thurs, Mar 16 at least, so we will plan to hook up with you sometime then. My e-mail is :

"mamacass11@msn.com" Please let me know you schedule. Maybe we can coordinate with Jill, Tara and Campbell also.

You are on my heart. Smiley

Hugs

and prayers,

Cass, Jon and Kate in Dallas, TX Smiley

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Roz

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Posts: 77
Gender: female

Re: Second surgery on the same side !!
Reply #9 - Feb 3^rd, 2006 at 6:17pm

Hi Yassi,

Sorry to hear you've not been feeling well.

You asked about blackouts - I don't have blackouts but I do have greyouts where everything goes grey - when it's a bad one, my vision does start going black, my arms and legs start feeling heavy and my hearing starts fading but I've never actually blacked out completely or lost consciousness. These only usually happen when I get up from sitting or lying or when I stretch and yawn. I seem to go through phases - same with my numb patches in my left fingers and left side of my face. I'll have to ask my Neurologist about ischaemic spasms - my doctors don't seem concerned about my grey outs.

I'll be thinking of you when you have your tests and surgery.

Best wishes,

Roz

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Runity

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I was diagnosed with MM
since May 26, 2005

Posts: 40
Brentwood, USA, usa, 392, 195, TN, Tennessee
Gender: female

Re: Second surgery on the same side !!
Reply #10 - Feb 3^rd, 2006 at 9:22pm

Hi Tom,

My first surgery was an EDAS but my neurosurgeon here in TN did a graoh instead of a bypass. He said that my arteries were not big enough to do a by pass. My parents were upset about it.

My mother to this day is upset that we didn't go to Stanford the first time in July. She thinks if we did my life would be so much better. All I know is that my neurosurgeon here in TN is the best in the state. He is so upset about this. He personally has been in contact with Dr. Steinberg. He really thinks that its his fault. The procedure that he did has a success rate of 75%. He did the easiest thing he could do at the time. But I am one of the 25% that the graph didn't take.

From my last conversation with Teresa she said that Dr. Steinberg has two procedures he can do. He is waiting on my new arteriogram and other tests to figure out what to do. I am just so nervous because I don't know what else he can do with my arteries so small.

Anyway, thanks for all the support.
yassi

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