I just wanted to know what medications everyone is taking to control their different symptoms.
I am taking dilatin which is an anti-seizure medications, but since I have been hospitalized they want to change my medication, which I am concerned about.

Louise is having daily shots of a bloodthinner, which in Swedish is called "Fragmin" and is given to prevent strokes and other clots of blood. In Sweden it´s a fairly common medicine but on short time basis.She has been taking it since before the surgery (dec-02) and the doctors want her to keep taking it for a long time, you know: "Never change a winning concept".

Annica

Annica,
             Mandy was on shots of lovenox also a blood thinner but just until a short time after her surgery then an ecotrin a day for life, I wonder why they're keeping her on the injections. I guess maybe different Doctors.
                                    Nancy  :-/

Hi Nancy!

I see we´re online at the same time ,that doesn´t happen often because of the timezone, when you guys in America are online I am asleep ant the other way around.
Louise is perfectly OK and has no symtoms from MM or previous strokes and I think thats why the doctors don´t want to change the medication but sometimes all the different opinions from all these doctors we are discussing on this board drive me nuts!!!
How can I be sure she is getting the best treatment and how do I know the doctors chose the right surgery for her (she had the EDA on both sides at the same occassion) and how do I know that they´re doing the right for her at all????? Somehow they´re not so interested in her case anymore and they act like she´s been cured, something I know is impossible with this disease??????

So I can´t answer your question but it sure helps to have all of you to talk to!!

Annica

The word blood thinner when concerned with moya moya is a very scary combination.  From all my research most doctors do not recommend this, because it can lead to hemorraging (sp).  I would recommend that you ask very pointed questions about this of your doctor

Kathleen has been taking one baby asprin everyday.
Mary Grace

My family member is taking two different anti-seizure medications. I believe Keppra and Depakote. He did have a seizure in Jan, so the dosage is quite high.  He is very fatigued and at times shuffles while walking.  We often wonder if this is from the medication or part of the MM.  Does anyone else have similiar symtoms?  He is in his mid 60's, so he is not  the typical MM patient.  Thanks for any input!

aka

aka,
          Mandy was misdiagnosed with seizures a year before her MM ds, I hope he is being treated for the right thing. Dr.Steinberg told us you know they were'nt seizures a year ago it was the MM.
                   Nancy

joeblack357 wrote on May 7^th, 2004 at 10:46am:

The word blood thinner when concerned with moya moya is a very scary combination.  From all my research most doctors do not recommend this, because it can lead to hemorraging (sp).  I would recommend that you ask very pointed questions about this of your doctor

Aspirin - a blood thinner - is vitally important for MM patients.  I quote Dr. Scott:

"Medicines which prevent this micro-clot formation, such as aspirin, are essential in moyamoya syndrome, and I believe that all moyamoya patients need to be on the medication permanently. [The small risk of Reye's Syndrome -- an inflammatory swelling of the brain following chicken pox infection when aspirin is given -- is outweighed by the consistent long-term benefit of the aspirin administration}."

Other forms, stronger forms, of blood thinners, like hepparin, I agree, are dangerous and should be monitored closely.

-Shari

Being the Vet on this Board, I will share something about this question:

1. I have MM

2. I have had 2 surgeries

3. I started having seizures 14 years after surgery

4. I take Keppra

5. I am not on any sort of blood thinner because I have no problem with clotting and according to my doc, it would only cause me to bleed more if I got cut.

To all of you: I still have all these questions. I ask him (doc) why he doesn't have me on a baby aspirin or something? He tells me I am pretty much okay now that I've had surgery. Do you all think I should see someone else? He dx me when I was 8, saved my life???

I worry because sometimes I don't know what to do. Most of the time, I am just a "normal" person. Maybe he is right?

Sara

The blood thinnner question is a good one. I was taken off of asprine after my first stroke. Had the surgery then was put back on asprine. Two months later I stroked again (ugh) and havent touched it since. My local doctor (who is incredible!) doesn't want my blood to be thinned and risk another bleed. I'm seeing Steinberg next week so I'll discuss this with him. I'm afraid to take asprine at this point.
Linda

I think it depends on the type of stroke. Tyler had to go off his asprin for a week and started having TIA's will never do that again.

More from Dr. Scott:

" I believe that the basis for some of the strokes and TIA's in this condition is sludging of blood within the narrowed arteries at the base of the brain, the formation of tiny blood clots at these areas, and the subsequent breaking off of these clots into downstream blood vessels -- which blocks them off temporarily or permanently..."

I think what Dr. Scott says makes a lot of sense!  Yes, it does take longer to heal when you get a cut and for that cut to heal, but I think that is a such a small negative to compare against the huge positives.  When I was preparing for my surgeries I had to go off of the aspirin for 10 days before.  That was really scarry, because I had TIAs for 10 days!  I definitely won't go off again unless I must for more tests.  The benefits of being on that aspirin are very positive for me.  

-Shari

Hi!

When I read all the discussions about bloodthinner I start to wonder if my daughter (or just her doctors?) is from another planet than most of you. I have asked about this bloodthinner several times and always get the same answer.:
This is the very best treatment for her, it´s a very effective medication and it leaves the system in less than 72 hours if needed. She is still on shots of bloodthinner on daily basis and was so even during her double sided surgery 17 months ago. Before her surgery they put her on it to stop all the TIA´s, numbness and headaches and it really helped her.
And I have been told the medication does NOT increase the risk of bleeding in her brain.  What´s your reaction on the doctor´s words? There is absolutely NO information in Swedish about this so it´s hard for me to value the information they gave me about my daughters condition. [smiley=huh.gif]
I don´t know what to believe anymore and it does feel kind of lonely up here "in the north" many miles away from all the experts and most of you on the American continent.

Sorry, just having a bad day, you people are all wonderful and I know too well I should be very greatful Louise is doing so good and she is still around.
I cry for all of you who had lost dear ones to this disease!! :'( :-[

Annica

Hi Annica - What is the name of the blood thinner?  What your doctor says sounds pretty good, in my opinion.  I would just make sure it is not a very strong blood thinner like Heparin.  Are they checking her blood on a regular basis?  Aspirin you have to stop 5 to 10 days before any procedure, so it takes a bit longer to get out of your system.  As I said before, the last time I had to go off the aspirin meant 10 days of TIAs for me.  I would rather go off a blood thinner 72 hours, as opposed to 10 days!

-Shari

Hi everyone :)

I don't have a lot of TIA's or headaches any more. I think my doctors point was that if it ain't broke, don't fix it. And that's okay with me. If I start having problems, we can always reevaluate the situation.

:) Sara

Annica,

My husband is on blood pressure medication & 1 coated aspirin a day.  When he went for surgery, he had to stop taking the aspirin 5 days before.  He had no problems, no TIA's, nothing.  I sometimes feel the same you do, living here in Canada.  All the experts on MM seem to live in the U.S.  

Annica,
         My daughter was on shots of lovenox before her surgery but after her 4 severe strokes, she stopped them a week I guess it was before her surgery then a couple months after surgery Dr. Steinberg said she did'nt need them anymore she just takes an Ecotrin (coated asprin) a day for life.
                                Nancy