Hello everyone,
It's been quite a while, life's been difficult to say the least. My son, Nathan, had surgery in March 2006 on both sides. Strokes following surgery, then diagnosed with Chorea (a movement disorder) in September. Nathan was doing great with therapy, almost back to normal. Then on 10/20/05 he collapsed at school. I was sure it was another stroke. It's hard when he has the strokes but at least we've been there done that. He was life flighted to a local hospital. When I arrived at the hospital I knew something was different. I walked into his room and he was on a breathing machine. Drs. said he could'nt breath on his own and he was in a coma. He had a brain aneurysm. I had no idea what had happened, all I knew is I had not talked to my boy since that morning and I wanted him to wake up. He was then life flighted to Shands in Gainesville, FL. I could'nt go with Nathan I had to drive. It took Nathan an hour, and my husband and I, 3 hours. Drs. called me when Nathan arrived and said they have to do surgery now, one of the Moya-Moya vessels burst and his brain was completely full of fluid. When I arrived, the surgery was complete, they put a Ventriculostomy in (a tube in the top of his head to drain the fluid). Drs. kept him in an induced coma. He had wires and tubes everywhere. Still not breathing on his own.  For 2 weeks he had vomiting, high sugar and high BP and he's still on a breathing machine and in a coma. For 2 1/2 weeks my boy could'nt speak to me. The only time I seen his eyes is when he cried out in pain. He finally woke up and started therapy. Drs. were amazed at how fast he recovered. He was at the hospital a total of 3 weeks. He has to remain on an adult BP medicine (Diltiazem) it was the only one out of many that worked for him without side effects. He has since completed all his therapy. He still has a limp and the effects of Chorea. He always recovers fast. He's a fighter and will always be. Out of all the information I've read and been told I don't recall hearing about a aneurysm. I have info that says after surgery everything is fine.  It's scary when the Drs. are puzzled. Sometimes I think Nathan is making his own path. I'm looking so forward to meeting people in Orlando who actually know about and have heard of Moya-Moya. I am possitive always, but I wonder what else? I write everything down, 2 days before Nathan collapsed at school he had a horrible headache and was vomiting. The past few days he's been having those headaches again. I try not to be parinoid but how do I do that? He's back in school because he drove me crazy to go. It's scary not to know what to expect. Thanks for listenining, I know I've bended your ear long enough. We will defintely see you in Orlando in August. I don't wish anyone else had Moya-Moya but I'm sure glad Nathan's not alone.

P.S. Hi Twinsmom, sorry we lost touch. Hope everything is well with you.

Thanks a bunch, God Bless
Saundra

hi saundra, i'm sorry to hear it's been such a rough road for you.
i must admit i'm incredibly suprised by how many people have the surgeries within a few weeks of the other (or at the same time!) i know that, while i've recovered fantastically now, just one surgery knocked me around so much for a while that i'm glad i've had to wait 5 months in between!
anyway good luck and i hope you find some answers soon and i know that when you meet more people with moyamoya it will be a great help to you!

xo

Nathan wrote on Mar 22^nd, 2006 at 12:45pm:

Out of all the information I've read and been told I don't recall hearing about a aneurysm. I have info that says after surgery everything is fine.  It's scary when the Drs. are puzzled.

Hi Saundra -

I'm sorry for everything you and Nathan have gone through but I'm glad to hear he's getting better.

With MM, I believe there is always a risk of those fragile MM vessels breaking and causing a hemmorage...I haven't read anything regarding aneurysms, but the hemmorage part has always been in the back of my mind.

Likewise, surgery definitely reduces the chance of stroke, but, bottom line, there is no cure for MM.  Surgery is the best treatment, but I'd read with caution when something statues that everything is fine after surgery.  To me, that is such a general statement, placing all MM patients in one category.  And, as we know, everyone's experiences are different.

It scares me, also, when Doctors are puzzled.  Have you tried emailing Dr. Scott of Dr. Steinberg to get their thoughts.  I feel reassured the more opinions I have (yes, it can be more confusing too).  But knowledge is power - you can never have too much knowledge.

Hang in there, Saundra - sending hugs from Philadelphia!  [smiley=hug.gif].

-Shari

Thanks for your responses, It's always nice to know we're not alone. I have several opinions from Drs. who have treated Moya-Moya. In Nathan's case it's always the same. It's difficult to learn your child has an illness that doesn't have a cure. I get angry because it can't be fixed, yet. A child who breaks their leg or needs stiches is ok after the problem is fixed. Those kind of things are difficult anyway, because it's your baby that's hurt. I can't figure out why my baby has to always have an illness. He had the surgery on both sides, the pain was horrifying, yet, he's still sick. Then, like the surgery's not enough, he still has strokes, and for no reason at all
A MOYA-MOYA VESSEL bursts and causes him to have ananeurysm and go into a coma. He's 10 years old, how is he expected to understand what's happening to him? I know I sound upset and angry, (and I am) but I also know, my son is strong and he will overcome this illness. Nathan will be the one to find a cure. Thanks for the sounding board, it really helps. God bless you all.

Saundra,

I can only image you pain.  My sister has gone through somewhat the same and it tears my heart to see how her life has changed.  I believe that He has a plan for my sister Patty and your son Nathan.  

My sister has had the operations for mayamoya and also has three big aneurysms that are inoperable.  I thank God for every day that I have with her and know that she is in His hands.

I will keep you and your son in my prayers.

Janice

Janice,
It would be nice to talk with you. For over a year, I haven't found anyone who has had the troubles that Nathan has had. I get very angry sometimes wondering why does this seem different for everyone else. Finding information on Moya-Moya is hard enough. Waking up each day and wondering what this day will bring is horrifying. Nathan has been having mini TIA's daily. We just came home from Gainesville Friday. They took him off the Diltiazem. I want my baby to be better. I'm his mother and he looks to me to make him better and I haven't a clue as to what to do. The sad part is no one else does either. I know he will overcome this. God brings us through it everyday. I never thought this would ever happen to my boy. BUT, I have never had any doubts that he'll be ok. Anyway, it sure would be nice to here more. God Bless you and your sister. It's really nice to have a support system. Saundra

Hi, Saundra:

I know how frightening it is  to see your child going through the horror daily even after the surgeries. When my daughter had the symptom daily, I was so scared that I was afraid of picking up a phone call because many times I was called to go see her in the emergency room. Every day we woke up and didn't know what the day would look like. I was in constant worry. Where she go, or which room stays, I tried ask people to keep the air flow in the room, but not many people could understand what I was talking about. It was very lonely and hard. We are very lucky that her condition is stable now.

From this board, I learnt that moyamoya may be related some autoimmune disorders. Treating or preventing the autoimmune disorders may treat or slow down moyamoya. Hope your doctor can find some clue why Nathan is in his current condition.
Regard!
Tingxin

hi Saundra
My 18 year old daughter Stephanie has had both bypasses in the past year and has now also been diagnosed with chorea.  Stephanie still has some TIA's but no one has ever explained why she has chorea, if its related to mm or if its permanent. The chorea only effects stephanies left arm and leg and she has been prescribed Keppra to help control the movements. This seems to work at present. Im sorry to hear that your son is still having problems.  I hope and pray that these may be resolved soon.

Gail ( Stephanies mum)