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-

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.

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!

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.

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!

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-

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..

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.

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 . 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.

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.