Matthew will not be eight years post-surgery until early September.  However, he has a new development that necesitated a visit to his neurologist. 
 
In about early May Matthew told me that his left arm "felt funny."  I told him to wait and see if it felt better.  Matthew never mentioned it again.  In early June I noticed that Matthew's left arm had a "twitch."  To describe this "twitch", I would say that his left fingers move regularly -- though not rhythmically.  Occasionally his left elbow will also move.  The movement does cease, or at least decrease, when the muscles are voluntarily called upon.  The movement also seems to cease, or at least decrease, when he is sleeping. 

I immediately called his neurologist and set up an appointment.  After a conversation on the phone, she ordered an EEG before seeing him.   According to her, there is no evidence of seizures.  She feels that he is exhibiting choreiform (pronounced KOREA - form) movements that can be attributed to the damage caused by the strokes, even though the last stroke was almost eight years ago.  At this time, she feels that these movements will not decrease or stop. 

Dr. Scott was consulted, and he feels that it is unusual to see this development so long after surgery.  He has requested an MRI/MRA, and possibly another arteriogram.  And then we will see from there.  But one thing he did state, Matthew's surgery worked better on his right side than his left -- so it is again unexpected that we would see problems on the left side of his body. 

History of Matthew (since I don't post regularly) for those who are interested. 
Matthew is now 15 years old -- and as tall as his father.  Matthew had his surgery at the age of seven.  He had two strokes before his surgery.  The first was located on the left side of his brain and affected his speech mainly.  The second was located on the right side of his brain and followed the anethesia he had received for the arteriogram that diagonsed his moyamoya in less than 24 hours.  His left extremeties were affected -- though they seemed to recover quickly at the time (though much longer than 24 hours, which completely ruled out a TIA).  In fact, Matthew has had only strokes, not TIA's Matthew's third stroke was approximately four days post surgery -- and the first night after being released from the hospital.  The stroke occurred on the right side of his brain and seemed to affect the left side of his face and his vocal cords.  He still has very minor affects that show, such as a lopsided smile when asked to smile on demand.  He does have a deep voice now that puberty has hit (and is raging! ).

Hi Kim,

Welcome back! I do remember your posts about Matthew and wondered how he was doing. I’m sorry to hear he’s having a problem. Although I remember your posts, I don’t remember you ever mentioning whether he had surgery on both sides or not. (??) That information could change many thoughts on this issue since this is a progressive disease. I do remember you had Dr. Scott though, and he’s the best, so I have faith he’ll get to the bottom of this and put you on the best path for Matthew’s case.

In regard to your question if anyone else has had ANY occurrence’s long after surgery, well, this may not be the same, but with my niece, a couple years after her surgeries, (She had surgery on both sides) out of nowhere she began to have seizures and that scared us to death, because she never had them before. Like you, we had an excellent MM surgeon, Dr. Steinberg, who immediately ordered tests and thank God they all came out excellent. He said that MM patients are sensitive and sometimes may have seizures, but bottom line; he said she was doing great and put her on some anti seizure medication, and sure enough she’s been doing wonderful ever since. That’s why I firmly believe yearly follow up testing is so important with MM patients. It keeps you on top of things and that’s so comforting. I understand your fears, but you’re on top of things and have an excellent doctor in Dr. Scott. As long as you have an experienced MM medical team through his testing, I’d feel confident but I’d definitely have the testing done ASAP to get some definitive answers.

I don’t know whether this will help or not, but there were some posts a while back about “twitching” similar to what you said about Matthew. I looked up the thread; perhaps you may get some answers here and see if it’s anything like Matthew’s experience.

http://www.moyamoya.com/cgi-bin/yabb/YaBB.cgi?board=news;action=display;num=1171402942

Please know you all will be in my thoughts and prayers. Please keep us posted.

Mar

Kim~

Want to send LOVE your way.

Can't speak directly to Matts symptoms, but can relate to the state of unknowing. I had a major stroke which led me to an mm diagnosis, surgery, then another melt-down stroke.  I've recovered well but do get exhausted quickly and my arms/legs get numbish/feel wrong when I'm tired.

I had one-sided surgery in 2000 with Dr. Steinberg.
Two years ago I Had some right handed loss of finger motion that came and went for a few minutes. Saw Dr. Steinberg and was deemed was ok and have never had it again.

So I send my love to Matt and your entire family,
Hope you get answers

Linda A (LA)

As horrible as this may sound, it nice to hear from someone who has experienced something similar.

Matthew has always taken the aspirin.  His neurosurgeon told us that he would need to continue it for life. 

He did have a new MRI/MRA in early July.  It was normal -- or normal for him.  They compared to the MRI/MRA done in June of 2005, and saw no changes.  So that is about as good as I think it can get.

Thank you for responding Sue!!

Kim -- Matthew's Mom

I am so sorry I have been away so long!! I wish I would have seen this post when it was originally made!

Kim,

I am 26 years onla nd had surgeries in 1989 and 1990. In 2001-02, I started having the EXACT symptoms. My left hand would twitch... just like you are describing! I also went to the doctor and my EEG showed no signs of seizure. My MRI/MRA came back as "ok"... My doctor put me on Keppra (anti-seizure) and the twitching went away. He told me the hand movements could be described as partial, continuous seizure. It was constant and it only affected my left hand. btw, my left side does have lower blood flow than my right side.

I got off of the Keppra when I got pregnant with my daughter and had to go back on an anti-seizure med after I had her. I am now taking Neurontin. I feel great~

I hope Matt is doing ok. Please feel free to email me if you have further questions. Take Care,

Sara