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

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



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!  .

-Shari

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

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