Hey all Tanya is now 4 weeks on from her first bypass sta-mca to her right side, all going extremly well a few head aches though. thr surgeon has told us that the blood flow to the left side isnt blocked enough yet yo warrant a bypass to that side yet and will check it in 6 months.
Does anyone have any thoughts? Its just that it feels like we r waiting gor it to worse before they do anything. love to know if this iz nornal?
Cheers

Geoff and Tanya,
Welcome to the family. I am sorry you have to be here but you are in the right place to get your questions answered.

Tanya,
What I am assuming you doctor is doing is letting the surgery side heal more. When the surgery side is supplying enough blood flow to its side then your doctor review the non-surgery side. That is what happened to me. It looked like both of my sides were having issues but my doctor saw an immediate issue with one side so he did the surgery on that side. Then 6 moths later he did another test and the non-surgery side was supplying enough blood flow!

Headaches should still hang around but less frequent. I get them only when there is an extreme shift in weather or if I am really sleepy, or dehydrated. You will get to know your new limitations on how much rest your body needs (more right now because you are healing).

Any advise is based on my personal experiences so what I did may not be what you need. I would review it with your doctor and ask why. If you are experiencing any symptoms that are stroke like or concerning do not hesitate to go into your doctor or the ER.

Please feel free to ask any more questions.
Stay Strong,
Becky

Geoff and Tanya,
My daughter, Annamarie, had her surgeries 2 years apart.  The right in 2008 and the left in 2010.  There was not enough blockage on the left at first, so we did followup testing each year until she started having propblems again.  By this time the left was completely blocked and the surgery was done.  She had her surgeries with Dr Steinberg and this is quite common from what I was told.  Just watch and if there are any problems get in touch with your doctor right away as Becky said.
Love and prayers,
Margaret and Annamarie  :)

My daughter had her surgery (right side) almost 4 years ago.  She has the "beginnings" of it on the left.  The way it was explained to us by her surgeon is if you do the surgery before the brain needs moe blood it won't work.  Something about the brain needing to be searching for another source.  If it's getting enough doing the surgery is a waste because the brain won't go to the newly created source to look for the blood.  We were told that they would look at it every year UNLESS we see symptoms and they would followup sooner to see if surgery is warranted.  Moyamoya apparently progresses at different rates for everyone.  As Dr. Steinberg said last year. They have had patients with little or no signs of it and then a few months later surgery is neded.  They have also seen people with visible signs and nothing changed for years.

My daughter was 2 when she was diagnosed with Moya-Moya (3 years ago).  She had a MRI when her strokes occurred. 3 months later she had a angiogram.  The reason for waiting was the doctor wanted to her brain and body to heal from the strokes.  Since then she has a MRI every 6 months to watch the progression of the Moya-Moya.  I agree with what the person said in the comment above mine.  My daughter has been diagnosed with Moya-Moya for 3 years and she has had minimal change.  Her blood flow is good and she has not had any problems.  Of course this does not mean that something can change in the moment but I think 6 months is an appropriate time frame.

Was diganosed in november. And they told me after tests that there is still enough blood flow on both sides to operate on either one of them. Have check up in two months and I hope it has stayed stable, because as I am now, with the blood thinneers and epileptic meds, I am doing just fine. There aren't enough vessels created yet to supply the part of brain that has te be cut off from blood supply during surgery for 20 minutes, so if that part doesn't get blood during the surgery I might come out of it worse than I am no, wo that is why they won't be operating on me just yet. But like I said, if the disease stays like this, I'm all for it! One shouldn't be 'asking' for surgery like that if not nescessary, right?

Still awaiting next august with a little nervosity ;-)

Hello, my son (37) has Moya-Moya.  On June 15th had the 1st surgery relased from hospital on June 18th.  Returned to hospital today (19th).  He had a Stroke on May 1st.  Never heard of M-M.  Don't like it at all

>>>There aren't enough vessels created yet to supply the part of brain that has te be cut off from blood supply during surgery for 20 minutes, so if that part doesn't get blood during the surgery>>>

Nanstev, I am confused by this.  If you haven't had the surgery what blood vessels are they waiting to be created?  The surgery is usually done because there aren't enough (or any in some cases) blood vessels in the brain to supply blood. 

Hi Geoff

Luca has bi-lateral moyamoya but only had surgery on the left side 3 years ago. Once the brain has good flow on one side, the body has ways and means of getting sufficient blood to the other side too. But this is not always the case and that's why periodic scans are essential to ensure all is well.

All Luca's scans since surgery indicate no progression on the right and therefor the advice has been no surgery necessary.

Take care
Mark (Luca's Dad)