Aloha,

Somebody suggested that I do a pole of how many people had a stroke before being diagnosed with moyamoya and how many people were diagnosed before having a stroke.  I thought that this was a good idea and am taking their advice.  

I didn't have a stroke before being diagnosed so I count my blessings each and everyday.  Thank you all for your help.

Mahalo & Much Aloha,
Melly

Melly -

I did have a stroke before hand (albeit a mild stroke, thank God).  When I had my MRI my doc confirmed that I had a silent stroke as well - so that's 2 strokes.  My third stroke - a bit more debliltating - happend when I was in the hospital having my 2nd surgery.

-Shari

Hi!

My daughter had 2 strokes before diagnose as they found them on the mr but they were both "silent", we didn´t notice them at all. Then she had several TIA´s that we did notice and they were the reason we went to the hospital to find out about this awful disease. I guess we were very lucky that Louise didnt have any damage from the strokes.

Annica

Melly,
               My daughter Mandy had many strokes before her diagnosis and were very devistating she has been rehabing for 1and a half years but is getting and doing much better.
                                    Nancy

My husband Eddie had many strokes in a 9 month period before being diagnosed with moyamoya.  He is still completely dependent on me.  Had surgery in Augest 03 and also getting better.  He was on steroids and immunosuppressents(spelling) all that time though.  Which weakened him all that time. Michelle

Hi,
My son Tyler had a stroke before diagnosis. It left him unable to use his left arm from the shoulder down. He has recovered about 70% use in the 9 months since surgery.
Rena

Mitchell had a stroke b4 being diagnosed, and the mri showed there was "old" damage to the brain...they couldnt figure out if he had previously had a silent stroke, or perhaps he had it while i was pregnant with him....either way, Mitchell infact had 2 strokes b4 being diagnosed

After about 12 years of horrible headaches and several MRI's and different opinions of migraine headaches, tension headaches, etc, I at 39  years old had a stroke  on 1/25/04.  So I did have a stroke before being diagnosed with moyamoya disease.  But I also had to be transferred from Monroe, Louisiana to Dallas, Texas to be diagnosed because the doctors here knew that I had a stroke, and saw something funny on my MRI, but either thought it was MS or a brain tumor and sent me there for a second opinion because they didn't know that it was.  (They didn't know what moyamoya was).  The doctors there did a arteriogram and within hours knew what I had.

Hello everyone,
I am noticing alot of people talking about the "silent stroke."  What is it?
I may have had alot of them, however, I was never told that I had any strokes.  This could have happened many years ago before they even knew what Moyamoy was at the time.
Alice

Hi Laura,

My sister was 41 when she was diagnosed with mm.  Are you a candidate for the surgery?

Janice

I had a stroke that affected my left side In Aug,2003 Ithen had tia's before being disgnosed with mm.  MRI's showed that I had also had strokes  on my other side too, but I never had any signs or symptoms.  I have since had surgeries on both sides and have been fine since.  I pretty much regained all strength/function on my left side.  Tricia

alice_moya wrote on Apr 15^th, 2004 at 4:15pm:

Hello everyone, I am noticing alot of people talking about the "silent stroke."  What is it? I

Hi Alice -

A silent stroke is one that you wouldn't have even known you were having - you wouldn't have any symptoms.  If you ask me it is very scary to not know this is happening with out any symptoms.

-Shari

:D Hello All:

I have had a silent stroke. My doctor told me it was old and that I wouldn't have known it was happening. I never stroked before being diagnosed, and had my surgeries 14 years ago. Last year, I had an MRI and MRA done and a stroke showed up (the silent one). My doctor didn't seem too concerned.

I guess I am okay. I think I stroked maybe when I had my daughter, because that is the most stressful thing I've done in the last 5 year.  ????  :-/

Sara

Kathleen had strokes before diagnosis.At the time of diagnosis and initial MRI they she had had a stroke and they saw at least 2 "silent" ones. She then had another  stroke 2 months later , a stroke on the way to Boston for her surgery, and then 4 days after her first surgery(on the right side) she had a major strroke on the right side of the brain and a showering of strokes on the left side of her brain. 2 days later she had surgery on the left side. She has been stroke free for 2 yrs. now. she lost almost eveything she had been able to do walk, talk ,sit ,up.she is now wlaking talking,in Kindergarden and even reading at grade level.My daughter was also born iwth Down Syndrome.I have read that this is a much higher risk group of children for Moyamoya.Kahtleen's first stroke just looked like a regression fromlack of therapies over a vacation.she looked a little wobbly on her feet.It finally progressed to the point that she was wlaking into the wall qand didn't even want to stand up.that is when went to the ER.
Mary Grace

I had 3 strokes

My daughter had one stroke that lasted three days.  We believe she suffered more, but we are not for sure.

This is fascinating information.
I had a stroke when I was 49. Was later diagnosed at Stanford by Dr. Steinberg (and at UCSF by Dr. Lawton). Had the STA-MCA surgery with Dr. Steinberg. Had another stroke two months later.
So I didn't have any warnings but, in retrospect, I've never been 'right' and have a history of migraines.
Linda

so far, my daughter has not had a stroke, none have showed on the MRI, so we are hoping to keep it that way for a much longer time....can't wait till the surgeries are done.

hillary

We are in the fortunate position that our daughter Natasha has not had a stroke before being diagnosed. She had attacks where she lost control of her legs, which led us to begin investigations, finally arriving with the diagnosis of Moya Moya. In the 2 1/2 years post surgery there have also been no strokes.

FYI

My husband had multiple stoke which resulted in a mm diagnosis.  

Jane

I forgot to mention in my post. Your probably not going to believe this but i now know when i am going to have a tia or stroke that day by the way i feel when i get up in the morning, if i wake up feeling foggy with a migrain i know it is going to happen sometime during the day.. This what i do.. I have to get up and get my boys off to school, after that i get as much work done as i possibly can without leaving the house.. When my left hand starts to tingle i know its close, I lay down on the couch and immediatly call my husband who works about 10 minutes away so i know he will be home before it takes full control. Thats when i black out, it can be very terrifing for me at times, but as long as i stay calm and in control i know i will be alright..

                                                          tammie

My family member had a stroke in his mid-twenties, but was not diagnosed with MM until his early 60's when he started  having TIA's.  
aka

Hello everyone,


    I'm sure you have all read my previous post and i appologize for any miss in formation.. I have living with MM most of life so yes it part of me now, and i was never really clear on what was going on. I just got off the phone with my mom and here's what really happened. Back in the late 70's I had to have my aorta repaired due to a hole, while in surgery i suffered a massive stroke that left my right side completely paralized.. The doctors did not have an explanation for what went wrong. I suffered another stroke at the age of 8.  I was finally diagnosed with MM at the age of 10.
     I am 32 now and I am an MM survivor.

My father had at least two strokes, possibly a third within about a month and a half timeframe.  Then he was diagnosed.  
His strokes had very definite effects afterward but he didn't know he was having a stroke while it was happening.  The first time it took him 2 weeks to finally decide the symptoms were worrisome enough to go to the hospital.  Is this was is called a silent stroke?  You don't know that something happened untill the effects are apparent?

My daughter had a stroke on her left side and that's when we found out she had MM.Boy what a nightmare. This was in 2000.Jennifer had just turned 18 and her last year of school. She had both surgeries here in Houston and has done really well. We didn't know at the time she was also pregant which also went every well and now going to have another one.
Carol