Hello everyone,jared had his second surgery on friday,aug 13th.everything went well, but he hasnt been feeling too well.hes had a  fever and his blood pressure was low for a while.He was able to come home yesterday,but we took him back to the hospital today,because yesterday he kept vomiting and we didnt want him to get dehydrated.when he woke up this morning,his lip on the left side looked droopy,and he was slurring his words.the first thing we were scared of was a stroke,so we took him back to the hospital,but a little while after,he was back to normal.at around 9:00 tonight,the same thing happened,and this time for a little longer.we dont know if this is somthing that just comes along with moya moya,because he never had any symptons before.we found out that he had moya moya because he passed out a few times.as you all know,he has downs syndrome,so if he did have other symptons,he wasnt able to tell us like other  people would.my mother is at the hospital with him now and very nervous.she asked me to write and ask if anyone else had similar problems after surgery...please give me any information you can..thank you all so much..
                                 jessica

Jessica...tell your mom to hang in there.  Im CarasMOM...she had her first surgery (on her right side) July 14th (shes 6yrs old) and that night she had a mild stroke on the left side (never really had anything like that on left side which is 30% occulated (closed)..the right side was 100% closed - the left side had been supplying blood to her right side...anyway she lost use of her right side, hand, arm, leg, foot...talking not understandable....I have to lipread because Im deaf but I could tell she was not moving her lips correctly, her personality was GONE...her spirit was missing....but 4 weeks of physical therapy, occupational therapy, continuous of "loving"...she is almost back...not quite...but SO much better...and has her 2nd surgery coming up on Monday the 23rd.   I've read here that you can continue to have strokes and TIA's as you heal, too.   The longer you go on...the better it gets....not one case is the same but there are many stages of recovering.  The drooping lip...reminds me of some of Cara's sudden facial changes...possible a TIA...but very very sudden....and when she continues to move around...almost like a therapy needed and the one side lopsidedness (not really a word but you know what I mean) disappears.  And Cara never really had major stroke or symptoms either until the first surgery...the mild stroke did more harm to her than her frequent "spells" did which she overcame in few hours or days or weeks depending on how long the "spell" was.  The neurosurgeon warned us that it was possible she'd experience a stroke (only 5% but she did)...I worry she'll be set back again after the 2nd surgery but know that we must hang in there...and consider it "a work in progress as they heal" however hard it is for us to watch...Cara has three teenage brothers (16yr old and two 14.5 year olds)...they all were upset to see how much the first surgery changed Cara...but saw her coming back over the past 3 weeks and know she'll do the same after the second surgery...just praying that if she needs to have a stroke...may it be a little one.

Another thing.  I had spinal meningitis at the age of 3...but had temperature of 107 for several days...and along with that I had 13 convulsions and took me six months to recover...I was like a baby...other than being totally deaf...I came back and lived a normal life...so while I was worried about my Cara...my mom saw similarities of my case versus Caras...when the brain goes through such trauma...the aftershocks(anything from seizures, TIA's, strokes) continue in series...some very small to notice.  Im 47 now praying very hard...that Cara continues to do better....will include all the MM people on this website in my prayers, too.

HUGS to all,   CarasMOM

 

Jessica...another thing..I'm looking at the calender..its been six days since jared's surgery.....five days after Cara's surgery we were traveling across country to go back home and it was HORRIBLE...as Cara was I think "seeing things" as she thought everything was funny, acting very much like a drunk person.  Unable to walk normally...was her first time out in public, too...I thought how am I going to get her from Rochester to Chicago...walk from one gate to another which was the longest walk to the gate to fly from Chicago to Phoenix.....I was able to grab a wheelchair and push her...she calmed down (maybe she had a TIA then)...but she was at peace in the wheelchair....and I found people were more helpful if one is in a wheelchair....then that first week home she got better then worst then better and worst again....then continued to heal, heal, heal, heal......she did feel sick...a few times and wanted to throw up, too now I think of it.  Hang in there and I'll do the same, too.

xoxo,  CarasMOM

jessica -

This happened to me right before my first surgery and then right after my 2nd surgery.  Sounds like TIAs to me.  It was scary - because I had never had a TIA that affected my speech.  Definitely talk to your neuro or surgeon as soon as possible.  TIAs are usually warnings.  Good luck - keep us posted.

-Shari

Tyler did well after his first surgery, but had alot of problems after the second. He is doing great now, and the TIA's he had a few months after his second surgery, (he had them a week apart) were very scary. Hang in there is does get better, especially if you realize what could happen without the surgery at all.

I'll keep your family in my prayers.
Rena

 It sounds like a lot of people have experienced some sort of TIA's after srugeries. Kahtleen ahd strokes in between surgery.After her second she did great and has had no strokes in 2 yrs.Kahtleen also has Down Syndrome so I know how hard ti is to know what's going on when they can't communicate it to you.I worried so much everytime she looked a little droopy on one side or cried really hard( I alwasy worried she was in some sort of pain).As time passed and she gained back what she lost from the strokes and get "brighter" and stronger everyday I was able to settle bakc  a little.I think you were right to take him back to check all of this.I know how much more comfortable it is to be around dr.'s and nurses when soemthing is going on you are worried about. We took Kahtleen to a rehab hospital for a month after her surgeries   and there were so many times I was glad there was a nurse nearby day and night.Keep us posted and know your family is in our prayers
Mary Grace

jared is home now biut i dont know for how long i really donrt know what to do he had his episode last nlght of not being able to speak clearly it lasted about 6 hours then he was fine the dr released us by the time we got home it statrted again the speech went out he is very tired and very agitated he knows what he wants to say and answers questions appropriately i called the dr when i got home and told him he said it could be seizure related and that the medicine they gave him before we left the hospital would not have worked by then he told me to call him in 2hours that was 4 hours ago thing s are still the same and i await his call please post if anyone else had similar symtoms after surgery i appreciates everyone who responded so far thank youn all    donna jareds mom