Title: Re: After surgery ????
Post by Mar on Aug 21st, 2009 at 12:24pm
Hi Twyla, Welcome to our MM family! I’m so glad you decided to join our family. There are some wonderful people here traveling the same road and understand exactly what you’re feeling. You’re not alone. I just wish I had some definitive answers for you, but with this disease it’s so different in each and every case because of the many individual factors involved. We just had a recent post from a member here, Tracey, and I think she worded it so perfectly, and if she doesn’t mind, I’d like to repost it for you to read incase you haven’t read it. I think it sums up perfectly how different each and every case is. tuknits wrote on Aug 18th, 2009 at 12:21pm: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 |
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I certainly hope that helped you to see a little better that we would love nothing more than to be able to say to you that everything will get better, but in some cases it hasn't and for others it just took time. I admire your trust in God. Keep it up. That will help you better than anything, IMO. We have to be determined to stand strong in faith and face those challenges that come against us. I pray that you are strengthened with His power to exercise endurance, perseverance, and patience so that you can stand strong in your faith and on your road ahead. I’ll keep you and your family in my thoughts and prayers. Mar
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