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Moyamoya Related Topics >> Moyamoya Related Information and Support >> Seeking people who had surgery to ask questions to
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Message started by B on Apr 9th, 2016 at 5:26pm

Title: Seeking people who had surgery to ask questions to
Post by B on Apr 9th, 2016 at 5:26pm
Hello,

I was diagnosed with moyamoya 10 years ago, and I have been lucky enough to have had TIAs but no major strokes. Only recently was I told by Dr. Steinberg that it's in my best interest to have the surgery (all other neurologists have taken the "wait and see" approach). I am now debating whether or not to have the surgery because I've had very few TIAs over the past year and a half.

I am seeking people who have had the surgery that I can ask a list of questions to. Ideally, this person would have had the surgery, but would not have had any major strokes (only TIAs) prior to surgery. If there is anyone that had the surgery prior to having children and then had children, that would be extremely helpful, too.  If that person does not exist on here, ultimately I would be very happy to ask anyone about their experience having the surgery as an adult. Let me know if I can send you my long list of questions (or I can post them here).

Thank you!

Title: Re: Seeking people who had surgery to ask questions to
Post by SusanL on May 24th, 2016 at 10:28pm
Hello,
I have not had surgery and can't answer any of your questions, but I was wondering if you have made a decision about your surgery. I was recently diagnosed with MMD but it looks like I have probably had it since I was about 18.  I'm 43 now.  I have not had a stroke and so my doctors have a "wait and see" approach also.  I just heard from Dr. Steinberg today and he is recommending surgery.

One thing Dr. Steinberg commented on were the ischemic lesions he found on both sides of my brain.  That shows that I have had tiny mini strokes.  None of my doctors at Kaiser mentioned these.  Just talking with Dr. Steinberg's nurse I feel like they have so much more knowledge about this disease than the doctors I've seen at kaiser.

I hope you are well and I'm wondering if you are moving forward with the surgery.  I'm in a bit of shock but thinking I should follow Steinberg's recommendations.

Title: Re: Seeking people who had surgery to ask questions to
Post by nicole409 on Aug 19th, 2016 at 9:22am
Hi
I hope you are well.  When I  was diagnosed last year, there was a " yes, you can wait, but you will be risking a stroke"
I opted for a surgery.  Living with disease is awful!  It causes anxiety! 


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