Lore,

I PM'd you...

Take care,
Shan

I don't know that I have an actual "answer" for you. But, I have had some shaking in my right hand a couple years ago. It was 14 years after surgeries and I started having a lot of headaches and my right hand was moving with a mind of its own. At that time, I went to see my neurologist and he did an eeg which did NOT show seizure. He also did an MRA/MRI and found nothing significant. He put my on Keppra to see if it would help and it did. Keppra is an anticonvulsant. I am not sure why it helped, but it did. I since have tappered off the Keppra and I am not having the "shakes" anymore. I think the tremors are related to Moya Moya, as I have seen "uncontrollable movements" as a symptom. But, I don't really understand why. Or why mine came and went. I was not on any other meds when they started, so I don't think it is related to any medications.

I hope this helps a little bit.

Sara

hello lore,

about 7 months after my first surgery i started having tremors in my left leg, an odd feeling for sure . after having them for a couple of months i went to see my dco and he put me on trileptal and i haven't had them since. trileptal is also an anti-convulsant, but a very mild form. 

i hope this helps you, oh and yes, he told me it could be mm related as i had a few strokes, though i had them without knowing about them. i only knew that i'd had strokes after my doc showed them to me on a brain scan.

jesenia

Irene,

Oh my gosh...I was just going to ask my neuro this Friday about feeling a jerk right before I fall asleep.  It has happened on 3 separate occasions.     As soon as it happens, I immediately open my eyes...it's quite scary!     My MRI/MRAs prior to surgery showed TIAs (even one on my other side from my surgery)!  However, I never knew I had any TIAs.... Could this jerk be a TIA?     What exactly are TIA symptoms?  Anything specific?

If anyone else has experienced this, please let me know too....  

Take care,
Shan

Hi Kathy,

Thank you for your response!    In that case, I guess I did feel my TIAs.  I too had numbness.  It started with my fingers (they diagnosed it as carpal tunnel), then my upper left lip, entire tongue, my bottom left tongue, then my left facial area (left cheek).  I went to the ER on a couple of occasions, and they did CT scans but sent me home because there were no "bleeds," and they felt I was not in immediate danger.     ( I wish they did and MRI/MRA...especially after visiting the same ER a couple of times for this very same reason).  

Another question...do you still experience "numbness" or any other feeling in the same areas you did prior to surgery?  I'm now about 2 months post op, and I don't feel "numbness"....it's more like a "pinching" sensation.  My docs said that it is normal... Do you or anybody else feel/felt a "pinching" like sensation in the same areas after surgery?

Thanks again, Kathy....  

Take care,
Shan

Hi Lore,

I got my days mixed up, and my appt was acutally today.  I mentioned the "jerk" I've experienced right before falling asleep, but he said that it is "normal."  I'm hoping so.... He is also recommending that I do an angiogram in November (which would make me 6 months post-op).  Other than that, no medication changes...just more blood work.

I hope Kevin's feeling better.  I'm sure you both are going to have a great time in Vegas....Enjoy for me! 

Take care,
Shan

Hi Irene,

Kevin's pain in the bottom of his feet I believe is MM related and directly related to his stroke.

He still hears swoohing noise after his surgery.  He says he now hears swooshing noise but it appears to be coming from his nose? ..............instead of ears.  I thought I misunderstood Kevin and then he repeated it and then said "yes" it's weird.  Don't know if you have experienced any such thing after surgery.  It must have something to do with the new found blood flow?  Obviously, I am just guessing.

I will be interested to hear if others have had similar experiences after surgery.

Hugs,

Lore and Kevin

Hi Irene,

Kevin took Ambein and woke up groggy and decided to lie back down when his eyes began to move back and forth very quickly.  I said stop it immediately as I thought he might be having a seizure.  We have called the doctor and am waiting on a reply.  It is scary!!.  You know Kevin had a significant stroke several years ago and had seizures after surgeries on both sides back to back as a life saving effort.  He was in really bad shape when he got to Stanford.  As you know , we owe everything to Dr. Steinberg for giving Kevin a second chance at life when every other doctor simply said go home and live out whatever time you have left.  We believe Kevin will find the right drug to assist with his sleep patterns through trial and error.  Kevin is on other drugs that may interfer with another, thus making it more difficult to find that exact match.  It is always a game of touch and go.  Not to say we ever get used to it but to say it is a fact of life.  It certainly keeps us humble and reminds us life is fragile and life is precious.

Our saying is "any day above ground is a good day".
and "No one leaves this earth alive."

We'll get there one way or another.  We keep working with the local doctors who have been very good to Kevin even though they admit Kevin is their only MM patient and they just don't know enough about MM.  They call Stanford and Dr. Steinberg if they have questions.  At least they take an interest and are willing to learn which makes things easier.

Hugs,

Lore and Kevin

Lore,

Did your doctor get back to you about Kevin's eye movements?  I hope I am not scaring you, but this sounds exactly like what Daphne was doing when we first knew something was not right (when she was not quite three months old).  Her eyes flew back and forth very fast -- but she could be eating, or playing while this was happening.

In her case, it progressed to seizures, but her EEG during these episodes of rapid eye movement did not show clinical seizure activity (the report said that there was an alerting response during the eye movement).  The neurologist at the time suspected that it might be related to migrain activity (since we have a history of migrains in my family)

I haven't come across anyone who has experienced quite the same eye movements as Daphne had.  I wish I knew more about posting video on line... I'd post it on Daphne's website -- unfortunately, I just can't get the file small enough   

I'm glad Kevin's doctors call Dr. Steinberg when they don't know answers.  Daphne's neurologists are far from MM experts, but seem to think they know everything    As you probably know, we owe Daphne's life to Dr. Steinberg, too.  Things certainly haven't been easy since Daphne's surgeries, but we are blessed to still have her, and blessed that she is making slow, but sure, progress.

Keep us posted on Kevin!
Jenny

Hi Jenny,

We called the doctor as soon as the rapid eye movement began.  It scarred us both.  The doctor said the same thing...no more Ambien.  Kevin is on an anti-seizure med called Keppra.  It has the least side affects and is not a narrow therapuetic drug like Dilantin or Tegretol.  Both of those meds require constant monitoring unlike the Keppra.

When Kevin experienced the rapid eye movement, he immediately went for a walk.  It was like he was trying to "walk it off".  He walked up and down the driveway and our driveway is 400 feet long.  He said it helped and the rapid eye movement went away.  It also made him tired to walk so much or he was tired from the rapid eye movement which was actually seizure activity.  He then could lie down and sleep without being worried.

His sleep patterns have gotten better since he has been walking.  It is painful for him to walk as he has had pain in the bottom of his feet and in his hip ever since the stroke.  If he keeps walking, he says he outwalks the pain if that makes sense.  I think he is just walking himself tired. I believe the excercise is good but not to the point of exhaustion.

Actually, the rapid eye movement stopped once he stopped taking Ambien.  So I'm wondering if it is simply something in Ambien that counteracted the Keppra or at least was trying to. Or if it is simply a fineline between other drug interaction and having seizures?  It is all such as mystery and the docs are sometimes as baffled as we are.  Since the rapid eye movement stopped once Kevin got off the Ambien, I think that is where it stopped and the docs didn't pursue the rapid eye movement because it stopped.  Now, if that happens again, I will be all over it because that would mean it is something else since Kevin is no longer taking Ambien.

As far as tremors go, Kevin has always had tremors.  Even as a young child and of course in the 60's no doctor knew what it was and the diagnostic technology was not very good.  I often wondered if Kevin has actually had subtle signs of MM all his life.  Kevin continues to have tremors.  Sometimes the are subtle and at other times they are extreme.  Again, another baffle. I really don't know what makes them worse or better.  Kevin doesn't eat or drink anything with caffeine.  I've really never gotten a good explanation on the tremors.  Heck, at one time they thought he had Parkinson's disease. 

Jenny, this is probably not much help to you with little Daphne.  She's too young to tell you what is happenning.  That's the really tough part.  Even when Kevin couldn't speak, he used his hands to communicate.  At least I would know something wasn't right.  I have gotten to the point if something different or odd is going on with Kevin I immediately call the doctor and have also been known to simply drive him to the hospital.  It does get frustrating. We are in the same boat as you in terms of the doctors here not knowing anything about MM.  However, if Kevin is experiencing something they can't make sense of, they will call Dr. Steinberg.  At least they admit Kevin is their first MM patient ever and they knew nothing about MM until Kevin. They have been educating themselves about MM which is a good thing and somewhat comforting.

I'm glad you shared with me about Daphne's experience with rapid eye movement.  I will be more aware now if I see this happenning again.  In fact, I'm going to do some research this afternoon on rapid eye movement.  I'll let you know what I find.

Hugs and God bless

Lore

Shan,
        i still have days and times that the numbness    f    eels more intense   . I also tend to slurr my speech mor e when I am  tired or stressed out.      i was told that
those issues tend to exacerbate the symptoms.  Nor have I had a CT Scan or MRI since just after the surgery in Oct. of last year.
                                                  Kathy

Shan:

I also am 'in tune' with a lot of things I hadn't thought of or didn't put '2 and 2' together until I was diagnosed in January.  Some things I think are new, but some things I wondered about before, and now wonder if it's moya moya related.  The sensitivity to noise is one of those (I think it was discussed on the board recently). 
I sometimes have a loss of words also.  The average person thinks its normal but I seriously think it's related to this disease. 

**Segue into funny story from work last week**
My boss is talking about business units.  We have 15 of them at our workplace - each designated with a 5 character code.  We want to introduce a new program - someone suggests a pilot business unit for the program.  I kid you not.  It took me ten minutes to realize that they wanted to introduce one of the 15 as a pilot program, and not introduce PILOT as a business unit.  My boss looked at me and said, r u having a moyamoya moment.  We laughed and I said I sure am. 
**Segue complete**

Also, speaking of numbness, I sometimes wake up with numbness (ie mini TIA) in the middle of the night though it lasts less than a couple of minutes.  It tends to happen on my left side/hand and is a result of compression to my graft on the right.  It doesn't happen on the left graft/right side.  It's very strange and I was worried about it initially.  Dr. Steinberg has said not to lean on it, but in the middle of the night, it kinda just happens and I think my body wakes me up in feeling the lack of oxygen to my brain.  My local neurologist said he had never seen anything like that before but felt that at least it meant it was working!

Anyway, just thought I'd add my experience. 

Trina