Hi everybody!

Still remember us? Louise from Sweden, diagnozed and operated on in late 2002?

Sorry for being quiet for so long but our lives have been so busy and a sad thing happened a few months ago. Louises aunt Kicki, my little sister, 44 years old, died in a serious infection due to stomachsurgery. The infection was so serious and fast that Swedens best ICU-team at Karolinska hospital in Stockholm couldn´t save her.  :'(
From perfect health to braindeath in only five days. It is so sad and hard for all of us, she was a fantastic person who loved life more than anyone and Louise and Kicki were really close. She has been walking this frightening moyamoya-road with us, giving us all support and now she is not here anymore.
Beside that Louise is having symthoms again and I am trying to make her doctors listen.
The last two weeks she is getting really dizzy, tired and "gone", hard to think and focus, describing it as her head is filled with cotton and she has to struggle to talk sometimes. Usually she feels OK in the morning but as the day pass it worsens. No tingling or cramps in her hand or feet. Crowded places and loud noices will trigger the feeling and lately she has been home from school and is too afraid to spend time with friends or playing her volleyball. Says she recognizes the feeling from before surgery four years ago not only as bad.
Iam so scared and worried. Guess she will have to have another surgery. How commoon is it that moyamoyavictims need re-surgery? She´s had both sides done.

Thank you all for being there! :-*

Annica

Annica -

I'm sorry for your loss and that Louise is experiencing symptoms again.  It should be that Louise is stressed from the loss of her Aunt.  Is she drinking enough water?

-Shari

 I'm so so sorry for your loss.I just can't imagine losing my sister who also is always there for us.I pray that your family will find the peace and strength to get through this somehow.
   This disease is just so scary sometimes.I'm sorry your Dr.'s aren't listening to you about your daughter.Have you tried contacting a Specialist here in the states?maybe they could help you get them to listen and do the neccessary tests to see if everything OK.We just went through sort of a scare with Kathleen.It's been 5 yrs since her surgery and she's been fine.A couple weeks ago she fell 3 times in less than a week at school jsut fell to her knees in the middle of the hall,She had a few episodes where she just got a funny look on her face and started crying,She also asked me to take her temperature(which she usually hates) she said "to make me feel better "then her speech therapist said she noticed her having a little trouble with her speech, she was leaving out some words and just wasn't herself.Then one day she just got very "out of it" and not responding to her aid or teacher for a little while.After that they said it was like a "light bulb" was switched on and she was back to her old self.She seems fine now,but it's woken me up to the fact that she still lives with moyamoya and it can show still show it's "ugly face" at any time.I too would be interested in hearing how often chidlren have trouble down the road after their surgeries,and what happens then do they re do the surgery? I'm keeping your family in my prayers....and sending my (((((HUGS)))))
Mary and Kathleen

Hi Annica,

I’m so sorry for your loss. That’s heartbreaking. My thoughts and prayers are with you. [smiley=hug.gif]

As far as the symptoms Louise is having, it could be so many things and not necessarily MM, but a MRI/MRA or angio would answer everything.

Please keep us posted.

Hi Annica,

I am so sorry to hear about everything that is going on. Just wanted to let you know that you are in my thoughts for the loss of your sister and I pray that they can find out what is going on with Louise. I hope that things work out for Louise and you  can all move forward! Please let us know what happens!!!

Christy

Hi again!

Thank you so much for thinking of us and caring, it really warms my heart.  :-*Thank you also for replying to my note! ;)
Louise still has symtoms on and off. We went to a neurosurgeon last week and I actually had to ask her to measure Louises bloodpressure, they did´nt think of that! It was 158/60 which is ok I think. After a long talk and several clinical tests the doctor put her on the waiting list for angio. We will probably have to wait several weeks, unless I call them on daily basis and remind them of our situation.
Louise is pretty cool about this but anxious to get the angio done so that she will know what is going on with her. My beautiful, strong baby!!!!
Thank you all for being there, it means a lot to us!!!!!

Take care and have a pleasant easter!


Love,
Annica

Annica,I can't believe you posted and update today.I was actually thinking aobut you guys and was going to post up and ask you how things were going.It sounds like your moving forward.I'm glad she's doing ok for the most part right now.Please keep us posted,and know your in my thoughts and prayers.Thanks for the update.
Mary Grace

Hi, Annica!  I recall reading your posts back when we first discovered this site!  I have a neighbor named Annica and she is from Sweden!
Re: Louise's recent symptoms,  my son had some episodes of garbled speech and sensitivity to light about 5-6 years after his stroke and surgeries.  An MRI/MRA indicated his blood flow was very good and nothing else looked suspicious.  (Could they do and MRI/MRA instead of an angio?  Just less envasive/risky)
But what we ended up doing was putting Kyle back on daily aspirin (40.5mg = 1/2 children's aspirin) and as long as he's done that, no more "episodes".  He's almost 13 now and they say this dosage is still enough.  Theepisodes would only last a minute or two, but of course were very frightening!  Worth discussing with the neuro. if she isn't already on aspirin therapy.
Hope you get some answers and she's back to herself soon!  In the meantime, God's peace to you all.......
Sue (Kyle's mom)