Hi Keith! Welcome to our MM family.

I’m sorry to hear you’re not doing as well as you hoped. That has to be frustrating after everything you’ve been through. God love ya! But there are so many different reasons why you could still be feeling the way you are. We would have to know more specifics to give you our honest opinion. For instance, if we knew what type of surgery you had, that may suggest a few answers for you, meaning… if you had the “indirect” surgical approach (EDAS, EMS, EDMS) it can take anywhere from 6-12 months to establish a new blood flow to your brain, so it could take awhile for your symptoms to lessen. Also, there could be numerous personal factors that we don’t know about that could possibly be the cause.

With MMD, your arteries at the base of the brain progressively get narrow, so your blood flow that’s filled with essential oxygen and nutrients is not able to reach all the parts of your brain in time, so therefore you may experience TIA’s or even strokes. Progressive means, those arteries continue to get even narrower over time, close and block off the blood supply to your brain, some faster than others. So the surgery is imperative, it introduces a new blood flow to the brain by either “direct” or “indirect” bypass surgery. They BYPASS your blocked arteries so you now get an alternate blood supply to the needed parts of the brain. If you have a successful “direct” bypass surgery, (STA-MCA or EC-IC bypass) you’re brain will immediately get the added blood flow to the brain, which reduces your chance of stroke that comes with this is disease. That’s why they said you’d feel like a new man, because your brain will get the blood supply it needs, but like I said before, if you had the ‘indirect surgery” it may take a while for a new blood supply to grow.

I have to note that with either surgery, it has to be a successful surgery to accomplish the goal of getting the proper blood supply, which is why I always emphasize an experienced MM surgeon. You can determine whether your surgery was successful by certain follow up testing, and so far the ones you mentioned won’t necessarily tell you everything. An MRI can tell whether you had any strokes or compare it to your past MRI’s, but you will need further testing to actually know if you’re getting the proper blood supply. Angiogram - shows complete images of your vessels and arteries of the brain, and the SPECT- shows the flow of blood through the brain. Have you had any of these tests?

You asked, I’m not sure what you mean or how to answer that other than to say, there is no known cure for MMD, meaning… the narrowing arteries cannot be saved or reversed. This disease is managed extremely successfully when the narrowed arteries are “bypassed” with donor arteries or muscle, and I have never heard of or seen a case where the donor arteries occluded, if that’s what you mean.

I would make sure you have the proper follow-up testing to get your answers, and if not, you can always get a second opinion, and don’t be afraid to insist on getting the answers you need.

You’ll be in my continued thoughts and prayers.

Mar

Keith,
I will apologize upfront, because I have a very long winded response.

I am sorry to hear that you are not doing as well as you hoped.  I would like to tell you that eventually all will be well, but I think that is a promise that no one can make. 

I think one of the biggest things that I have learned about this disease is that although many of us tend to have lots of things in common as far as symptoms go, etc., moyamoya is different for everyone.  Your experience is unique to you for a whole myriad of reasons from your age, stroke/no stroke, one stroke/several strokes, surgery/non-surgery,  type of surgery, unilateral/bilateral, cognitive abilities pre/post surgery, genetic make-up, stress level, children/no children, full-time/part-time/no work, level of hydration, meds/no meds and the list goes on and on. 

For that reason, I believe that for someone to tell you that you will "feel like a new man" after surgery is highly irresponsible.   Although it is surely a possibility that it might be the case for you, it also might not.  Having said that, I believe that all that any of us can do is to speak of our own experience and that we need to be careful to frame our responses to people in that light.

So here is what I can tell you from my experience.  I was diagnosed with unilateral moyamoya on the left side of my brain in December of 2006.  I had STA-MCA bypass with Dr. Steinberg that same month.  After my initial recovery from surgery, I had a period of about 6 months were I felt "good"- by that I mean relatively normal for myself as compared to pre-diagnosis.  After that I began to experience a decline.  Many of my pre-operative symptoms returned and some increased.  I experience occasional numbness (although never to the extent as before surgery), I get terrible headaches, suffer from extreme fatigue, transient memory deficits, transient speech loss, and experience episodes that I can best describe as feeling vacant - aware of surroundings, but unable to communicate or interact with a heaviness in my limbs bilaterally. 

I had my 6 month follow up at Stanford, but at the time, I was still doing fairly well.  Since then, I have had consistent follow up with yearly (and sometimes in between) MRI/MRA, SPECT, CT angio, CT perfusion and extended EEG testing to rule out seizure activity.  All test results have shown that my graft is open and supplying blood as it should and that there is not progression of the disease to my right side.  All of the doctors I have seen (does not include Dr. Steinberg as I am set to see him for my 3 year follow-up at the end of this year) have said that based on my tests, they do not see a reason for the persistence of my symptoms, however, one neurologist did say that just because he doesn't know the reason, it doesn't mean that one doesn't exist.  I am not sure that I understood it correctly, but I did watch the presentations from the International Moyamoya Symposium (Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or ) and thought that some of the doctors said that they often find symptoms persisting in excess of what would be expected based on angiography.  Again that was my take on what I heard, but I plan to verify that with Dr. Steinberg when I see him.

So here is my opinion of my situation.  Although my symptoms have worsened and I am not doing as well as I would have hoped, I do believe that the surgery was the right thing for me to do in my situation.  I believe that it kept me from having a major stroke. 

I know several people with moyamoya.  Some of them have done very well after surgery and lead relatively symptom free, unaffected lives.  Still others I know, like me, have not fared as well.  Some are glad they had the surgery and believe it was the right thing to do and others are not sure.

The best thing I can say is that I think that it is important for us to be our own advocates - to read as much information as we can, talk to as many people as we can and armed with knowledge, to make the best decisions we can based on our individual situations. 

I hope that this helps in some small way and hasn't muddied the waters for you instead.  I wish you the best and hope that you will begin to feel better.  Know that you are not alone and that there are lots of great people here to offer their experiences and words of encouragement when you need them.
Tracey

Hi everyone, sorry it took so long for the update. Here is some more information.I had a direct bypass in December of 08 and I had an indirect bypass in February of 09. I was sent to the Cleveland Clinic on 8/22 for a Cerebral Angiogram and a specific MRI to check on a Chiari Malformation that was discovered during my last MRI.

The Chiari Malformation may possibly be the reason for my third surgery in a year. In case you do not know, a Chiari Malformation is when your Cerebellum does not fit in the space designated for it, so it pushes it's way out of the hole where your spinal cord comes into your brain.

This could very well be the reason why I am still having symptoms of Moya Moya because the symptoms are very similiar. It is Monday and I am still awaiting results of my tests. The one thing that I do know is that I am growing very tired. I am also beggining to worry about my job because I have missed a considerable amount of work because of the problems I have had.

I appreciate the support I have received from everyone. I will keep you all informed. Thanks again.

Keith

Thank you very much Becky. I am still waiting for results. Last time it took this long, it was bad news. I am trying to stay positive.