GGonzo

DJ is absolutely correct.  I live about 10 - 15 miles from you in Waterford.  If you would like to talk, email me and I will send you my phone number

Janice

Hi....the "lets wait" or "not quite yet ready for surgery"...and numerous other lines are often heard by many of us.  I know when someone says that they currently did not have any symptoms at the moment and they were willing to wait.  My Cara had symptoms at 2.5...then was ok for 18 months...then symptoms returned but not as strong (because she was stronger so one doesn't notice as much)...then symptoms were gone another year and returned again.    All that time we did follow up MRA's and angiogram.  All that time her neurologist kept saying "she "might" have MM, "might" have something else...we have to be sure it's MM...the puff smoke very faint in her case but since 2.5 they could tell her artery network was very abnormal but also said there was a broad spectrum of disorders that she could have....the doctor even said it may be until she is in her 20's before anything needs to be done.....anyway.....long story short before I got really into this site...I decided to go for second opinion and they had better equipment and confirmed it further that Cara did have MM, been having tiny strokes all along ....and the blood flow on the right side was actually coming from the left !!!!!!!!!!    She had her right side surgery shortly after..and unfortunately her left side was already quite fragile...she had a stroke in the recovery room from 1st surgery on her left side...which took away alot from her right side including her smile and personality...she no longer had any fear, any care in the world, or any sense of what's going on, no control over her bladder, unable to write, unable to use her right arm, leg, ...her three teenage brothers who were constantly complaining how annoying she was...wanted her back.    Five weeks later we went back (Mayo in Rochester) for the second surgery on left side.   She had extensive physical and occupational therapy during that five weeks and regained half of the strength....I was more scared having her go for her second surgery.....but it went great and when she got back from recovery she was smiling...her old self...wanting Mommy (I had goosebumps)...I couldn't believe what she already gained back from the surgery...five days later we head home to AZ...she was waving excitely...so excited to see Daddy and her three brothers.....They were all going ohhhhhh she is BACK, oh my gosh Cara is really back.

Had we not gotten that second opinion.
Had we not proceed with a MM specialist, proceed with the surgery....I don't think Cara would even be here.

Don't wait....really....just don't wait. 
You just have one life.

Will keep you in my prayers.  Hugs,  CarasMOM

Hi ggonzo:

I want to add another 'you must get a second opinion' story.  I'm someone who had never been in a hospital for anything.  (Even hated being within one when my mom was sick last year).  After I had my stroke, I never thought I would have a 'rare' disease.  I thought it was all the junk food I'd been eating in the office (LOL). 

I was very lucky enough to get a 100% confirmed diagnosis (I've learned that not all neurologists know about this disease so although my neurologist is not an expert, I was lucky that he was able to identify the disease and confirm diagnosis with MRA/MRI/angiogram test). 

I bring this point up particularly because even diagnosis was confusing for us.  The first surgeon we went to told us that I did not need surgery because I did not have 'symptoms' (i.e. TIAs).  We went to get a second opinion and figured we would be okay as long as the two doctors said the same thing.  The second doctor said I needed surgery and he was surprised I was not on aspirin (I had been told since I had a hemorrage that I should not take aspirin).  BTW, the second was a mentor of the first doctor.  Great, it was 1-1.  We needed a tiebreaker.  I sent my films to Dr. Steinberg -- and he said surgery -- so now we were 2-1 in favor. 

Still we had confusion because he said direct and the second surgeon didn't say direct or indirect.  The first had said direct would not be good in my case if I did have surgery.  After much research (shout out to my brother who is a pediatrician and helped out a lot in understanding the medical terms), and one more opinion with another neurologist (who understands a lot about moyamoya who also recommended surgery), we finally felt comfortable in making the decision to go to Stanford (five days and counting!). 

So, my point is, ask questions, get several opinions for diagnosis.  If diagnosis is confirmed, make sure you do your homework.  It's a pain (and believe me, I'm not a medical person - it's a totally foreign language to me).  But it's worth it to ask a lot of questions, and get several opinions.   And don't feel afraid to question doctors.  It's not about their ego, it's about your (or the patient's) life.  My family was very annoyed with the first doctor.  After two of the four we had gone to contacted him to consult why he recommended no surgery, he contacted me to defend his decision and he ended up speaking with my brother who questioned his recommendation. 

I think that doctor is very good at what he does (they were all experts who we consulted), but everyone has different experiences and you have to decide what's best for you and seek out all the information you can.  The second doctor made the point to us that why would we want to wait until I have a debilitating stroke (which of course makes sense; something we did not think of before that).  The first doctor had done the indirect on many moyamoya patients but all of his patients had had TIAs before he did the surgery.  I had had a hemorrage, so his experience did not merge with my experience. 

So again, keep all this in mind -- ask ask ask, research research research.  Persistence pays off in anything you do. 

Hope this helps and I hope everything works out for you. 

Trina

I totally agree with Shari on this.  I was the same way.  I was so speechless when I was diagnosed.  When I went to my consultation with the neurosurgeon in DC, I couldn't think of any questions.  I had them all written down in case I forgot them.  Of course, he didn't really allow me to ask any of my questions.  But my brother would always say....don't worry.....I'll remember what to ask.  Evern after the surgeries, my brother has been a big help!

Michelle

GG,

Yes, good collateral bloodflow is "normal" in most MM patients.  The brain does a wonderful job of trying to make up for the blockages.  However, over time, the collateral flow usually isn't enough to satisfy all of the brain's demands which is when the problems can unexpectedly happen.

As for experienced doctors, there is a list of doctors on this site people have seen and recommended located at: http://www.moyamoya.com/cgi-bin/yabb/YaBB.cgi?board=surgeons_board.  I, personally, would suggest contacting Dr. Steinberg at Stanford and then going from there.

Hope this helps,
DJ