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Want to meet other MM'ers? (Read 25068 times)
Robert
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Re: Want to meet other MM'ers?
Reply #25 - Oct 8th, 2012 at 11:32am
 
Our Followup appointment is now set at OU Childrens Hospital in OKC for Oct 23rd, so we get to wait until then but I will be on here everyday and reading different pages so I can learn all I possibly can in the short time before our appointment. Thanks again for the support and information that everyone is willing to share.

Robert-
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Arianne120
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Re: Want to meet other MM'ers?
Reply #26 - Oct 8th, 2012 at 3:44pm
 
You are an amazing parent. It'  true blessing that you guys did get the answers and found this out now. Are you moving forward with the surgery? Everyone's symptoms seems to be really different. But, your son is amazing. I learned alot from this site...a nd still am continually learning. I'm keeping in touch with a few of the people in this site too. A few, I'm glad to say are close enough- if we wanted to get togheter it would be possible. Plus the doctors they've used are near enough for me to utilize. 6 a year? Why did it take so long for them to finally diagnose him? Either way... I'm so glad you guys are so much closer to a diagnosis. Feel free to contact me as well. I got in contact with Donna above and now am friends with her daughter on facebook. You can also email me at adavis0219@gmail.com. If its easier you can also facebook me. My email is kuddley_07@hotmail.com. Just email to let me know. Sometimes it helps to talk about it. Smiley
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Arianne120
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Reply #27 - Oct 8th, 2012 at 3:51pm
 
Oh I just noticed that you said your follow up appointment is on the 23rd. let us know how it goes. Mine is on the 17th. I'll post everything up here once I'm done. Or I'll email you to let you know. Since we seem to be moving at about the same time frame. I also just currently went through a tia.
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Robert
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Re: Want to meet other MM'ers?
Reply #28 - Oct 12th, 2012 at 8:02pm
 
We will pray that your appointment goes well, we look forward to hearing from you after that.

Robert-
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Arianne120
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Re: Want to meet other MM'ers?
Reply #29 - Oct 18th, 2012 at 1:56pm
 
Hi Robert Thank you! I saw dr. Peter Khan yesterday briefly. Basically he had to look over my mra again. And based on what he saw... he thought that there was extreme narrowing in the right side of my brain. He said the angio gram would be the one to tell me if I need to get surgery or not. He said no hurry... but at this point I should get it soon. I'm doing an angiogram next month at the hospital. I also have schedule a follow up appointment with him as far as my results. In the mean time I'm sending all of my medical records to Dr. Steinberg in California as a second opinion. He said the angio gram had a less than 1% of causing another stroke. But, Of course I have to do it. He said there is different types of bypass surgery that I can undergo. To be honest I would suggest calling up to the stanford office for dr. Steinberg. I talked to Jill in that office. She answered so much of my questions. She also wanted me to call back if I had anymore. So here's to another step towards recovering. I hope this helped!
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Robert
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Re: Want to meet other MM'ers?
Reply #30 - Oct 19th, 2012 at 12:42pm
 
Yesterday, I made a follow up at OU childrens, went ok it was a long and tiring day. We met with another Dr and she had us do more blood work, and ECHO, and an EEG which was the worst of the three when you have a hyper 14 yr old like I do. Good news was I got to meet Taly and Ethan while we were doing the blood donation portion.

While there I did get a copy of the MRI's on disk and I plan on sending it to Boston tomorrow.

I think that the Dr's I am dealing with arent as sure of themselves as the one Taly has dealt with. At least this is what they portray to me anyway.

Hopefully by Wednesday they will have conferred with each other and get back to us, in the mean time I will be talking to Boston.

Robert-
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Arianne120
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Re: Want to meet other MM'ers?
Reply #31 - Oct 22nd, 2012 at 2:07pm
 
Hi Robert,

That sounds just about what I'm going through. Alot of questions pops up. When I saw Dr. Burgin he said a slight narrowing. When I saw Dr. Khan (Neurosurgeon) he said it was an extreme narrowing. It's conflicting. All I get is do this test... and we'll follow up to see what you need to do next time. Jill from Stanford was basically my rock right now. But please let me know how it all goes when you go to Boston.
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hrsridermom
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Re: Want to meet other MM'ers?
Reply #32 - Oct 24th, 2012 at 4:36pm
 
Arainne, Destin and I will be at USF Health tomorrow afternoon to see Dr. Rose (her neuro) Have you heard anything from Dr. Steinberg?

Donna
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Arianne120
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Reply #33 - Oct 24th, 2012 at 4:46pm
 
I spoke to a lady name Jill at his office. Just waiting for Lakeland Regional Hospital, USF, and Tampa General Hospital to send the film and my charts to them. She was really nice and helpful. She knew you and destin too!
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Arianne120
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Reply #34 - Oct 24th, 2012 at 4:47pm
 
Oh... and how is everything going with you and Destin by the way?
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Robert
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Re: Want to meet other MM'ers?
Reply #35 - Oct 26th, 2012 at 6:34pm
 
Wednesday I got a package sent to Boston with the CD of the MRIs, talked to Dr Thursday and he said he would probably get a chance to look at them Tuesday so would hear back middle to end of next week.

Talked to Jill Wednesday also sent a package to them also then found out the CD didn't have the 2012 MRI so sent out another Thursday morning probably won't hear back for an extra week because of the CD mess up.

Hopefully next week will hear back from OU children's with there results on all tests. And there recommendation.

That's all for this week, should be plenty of news next week.

Robert-
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Arianne120
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Re: Want to meet other MM'ers?
Reply #36 - Oct 29th, 2012 at 10:00am
 
Robert just went through the same thing. I had the MRI/MRA but not the CT as well on the disc. So now I have to go back to the hospital and get this information.
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Amit
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Re: Want to meet other MM'ers?
Reply #37 - Oct 29th, 2012 at 5:28pm
 
Robert,
Looks like Benjamin has already suffered for 7 years.. Our 5 month old had a stroke and we were told to wait till he reaches 1 year of age.. However, Dr. Scott from Boston Childrens was not to keen on waiting..
1. MM is progessive,  no one can predit the rate at which the disease is progressing and it is better to get the surgery done at the earlist possible.
2. Dr. Scott thought that having a second stroke would have been devastating..  which we as parents totall agreed (we see the impact of the first stroke already) 
3. I would suggest, now that you know its MM, its better to be treated for it at the earliest, rather than wait.. School, college eduction, in general everything can wait and should wait over any health issue. But thats just me..  Good luck with everything..

My 2 cents..
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Amit
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Re: Want to meet other MM'ers?
Reply #38 - Oct 29th, 2012 at 5:33pm
 
Sorry, did not see the updates before responding.. Looks like you are on the right track..

Good luck with everything..
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hrsridermom
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Re: Want to meet other MM'ers?
Reply #39 - Oct 30th, 2012 at 9:04am
 
Hi Arianne, just saw your post.  We met Jill in Kansas city last summer.  Her daughter has MM. Haven't met her yet...she was busy with colege...but I do look forward to meeting her someday.

Destin is scheduled for a CTA on 10/9 to see how her left side is doing.  She's having a lot more tingling in her face and hands.  Could be college life or it could be MM...we just want to make sure it's not serious at this point.
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Robert
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Reply #40 - Nov 8th, 2012 at 8:19am
 
So, this is where we are as of today. I called OU Children's yesterday to talk to the Nurse, and found out that all the results were in and they came back negative.... what that means I have no idea, I am not super happy with the lack of importance put on this from their side. The nurse said that we will just continue with our scheduled appt in Jan 2013.

By now both Boston and Stanford should have received the packages sent them for review. I have sent the $350 to Boston to cover their charges for the 2nd opinion and thats where I am. I will call and email Jill at Stanford today to follow up with her.

So, all else being status quo we will be driving to Gulf Shores Alabama for Thanksgiving vacation!!!

I will update here if I hear from Stanford or Boston.

Sincerely, Robert
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Arianne120
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Reply #41 - Nov 8th, 2012 at 8:44am
 
Robert thanks for the update. I know it feels like everyone is taking their time with the necessary steps to take care of this. But, please let me know if you hear from them. Right now, My angiogram has been put off since my husband and I found out I was pregnant on his birthday Smiley. It's scary because now, I dont' know if I did need the surgery. But my neurosergeon didn't think anything of it. Didn't even say anything about rescheduling a time for me to talk to him. I feel like I'm kind of put on the side. Hope you guys have a wonderful thanksgiving.
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hrsridermom
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Re: Want to meet other MM'ers?
Reply #42 - Nov 9th, 2012 at 7:33am
 
Robert have a good time in Gulf Shores.  Keep us posted when you hear from Dr. Steinberg. 

Arianne, didn't you say you had a stroke with your last baby? Have you sent your results to
Dr. Steinberg?  I'm sorry but it seems to me your doctor should be taking this more seriously. Congrats on the news but please take care!  Destin is going to have a CTA done today but we won't see her doctor until 11/27.  I don't think hers istuation is urgent so I'm not worried about waiting until then.
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tjedwards55
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Re: Want to meet other MM'ers?
Reply #43 - Apr 28th, 2014 at 9:37am
 
hello. my 38 yr old husband just recently found out he has MM. We are from the KC MO area. We have a surgery date for this week.
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gotchlorine
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Re: Want to meet other MM'ers?
Reply #44 - Apr 28th, 2014 at 2:07pm
 
Wishing you and your husband all the best as he has surgery this week!

There is a community of moyamoya patients in your area. They are planning a get-together in Missouri for 5/10 (to celebrate/recognize World Moyamoya Day). It may be too close to his surgery date, but if you are on Facebook, and go to the World Moyamoya Day - May 6th page, you can keep up with future gatherings.

Please let us know how he is doing!

Warmly,
Jill
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