Hi Saundra,

I just sent you a pm, and would be glad to talk with you. I don't have a child going through what Nathan has gone through, so I can't even imagine your fears or your pain, God bless ya, but please know I'm here if ya need a friend or someone to talk to. We all are, just tell us a good time for you, and we'll work it out.

You're both in my heart and prayers.

Mar

Hi Saundra,

I have a daughter, Louise who is 9 years old and she had surgery on both sides in Dec 2002 a couple of months before her 7th birthday so believe me, I do know what you´re going through!
I have a few questions; did your son have the stroke after the surgery? What kind of surgery did he have? How is he? What symtoms is he having? Do you have contact with his surgeon on regular basis?
I know it´s horrible to watch your child suffer and to fear for it´s life every second. I watched over her day and night til the point she was fed up with me. In Sweden there is very little experience of MM so the doctors could give my very little guidance in taking care of my daughter. I had to make my own desicions of "do´s and don´ts" and thats when this site was such a comfort and support for me.
I was told 10-12 months before the new vessels had fully developed but the change (for the better)started to show a few weeks after surgery, not 12-18 months like you have been told.
After surgery I spent 6 weeks at home with my daughter in order to give her the rest and calm I felt she needed. She did have to rest a lot as I remember it.
After that she went back to school parttime and when I was not with her in school she had an "assistent" with her all the time to watch over her and in fact she had that until Aug 2004.
I think the best you can do is to take one day at a time, trust your instincts and use this site to ask away about all the fears and questions in your mind.

Take care of Nathan and don´t forget to take of yourself as well. Remember that you will both be in my thoughts!

Annica

Saundra,
Sorry you have to go thru this. My son had a stroke Dec 2002 and surgery June 2003. He was 11 at the time of his stroke. I think it was harder on me than him. Time will help, but watching your child go thru this is terrible. The best thing for me was reading all the info I could and asking questions.

MM is a terrible thing to have to watch a loved one go thru. Although you will learn a lot by reading and talking, you will also learn there is still a lot unknown. Just know you are not alone.

you and your son will be in my prayers.
Rena

WOW, I'm so emotional after readind all your responses, I finally did something right. I'll chat whenever anyone has time please tell me. Not sure what PM means but I'm there. I'll tell you about my son now. (please over look spelling) Nathan's right leg kept going to sleep alot while he was standing up. He's always been clumsy and he started having headaches often. At the end on Jan. both my sons (Nathan 9, Aaron 5) and myself decided to visit my mom in Tenn. The day we arrived we went to Wal-Mart. As soon as we walked in Nathan fell. He was very disoriented, he tried getting up but could'nt. I thought he broke or sprained his leg. I took him to the ER they ran a dozen tests and poked him alot. Finally they say he had a spot on the left side of his brain and they did'nt except his insurance. He was taken to Nashville to the children's hospital. They did tests and told me he had MM on both sides and there was no cure. After CT's spinal tap and so many other tests IV's every where two days later they said he needs to give his brain time to heal surgery should be 4-6 weeks. Scared to death at my mom's with fever, headaches and still unable to move his foot. They called it leg drop. 3 weeks later they
did'nt except his insurance. Fla. insurance needs to have Fla. Doctor. They referred Dr. Pincus in Gainesville. Appt was 1 week after we came home. Surgery was scheduled March 22nd. 2 weeks ago he had mini stroke transported back to Gainesville. Pincus moved up surgery to 7th. Before surgery he had an allergic reaction to the antibotic. Surgery was a lifetime long. After surgery, Nathan did everything different Fever 104, unable to speak, not aware of us, high blood pressure, dehydriated. All tests were done again CT, spinal tap. Finally he started talking (most wonderful sound ever) He said to me mommy take this off my head. I told him it had to stay there for awile. There was nothing on his head it was the swelling. Now were home, waiting for 12-18 months to go by and he is not the same or even close. His speech gets really bad his leg stops working like before. He's always been A student, he can hardly read and write. He's been to Doctor and had mini strokes. MINI, not to me. What are they suppose to do for him when he has a major one since he has already had surgery. He's so tired all the time. His pupils stay so big. His speech is so bad. If the other surgery shows progress immediately why not that one? We go back to Gainesville Wed. He lost very little hair. I read last night 2 people have died from this disease. I do know MM won't affect the new vessels. Will he be ok until they start growing? Why doesn't anyone in the medical field know anything about this disease? Hospitals here are amazed and I get so angry because they should know, it's there job. I know I sound crazy but only most of the time. Most days I have to make myself be positive. I have so much faith and spend most time praying. I pray with my son. God works better and faster than Tylenol. I feel like a failing parent. My son depends on me to make him better, I depend on God to give me strength. God sent me to all of you. I have so many questions till I want to ask them. Thanks for your prayers, your all in mine everyday.

I like the Flintstone sign - that's part of my prayer it's hard to believe it but I do

Hi Saundra -

I just want to reiterate what Michelle said - Therapy!  Are you seeking therapy for Nathan?  I had my surgeries a year and three months ago.  I had a stroke right after my surgeries - couldn't talk, write, type.  Therapy helped me a lot - but I also did a lot at home (I was 28 when I had my surgeries, by the way).  I went to the book store and bought remedial writing books and practiced using them.  I bought a computer program to teach me to type again.  My parents worked with me on speaking again - and I did simple crossword puzzles to better my vocabulary. 

Have faith, Saundra!  I know it's difficult right now but things will get better with time (IMO - In my opinion).  And read all you can on this website.  I know it's a cliche - but Knowledge IS power!

By the way - PM means Private Message.

-Shari

Part 1 of my post to you:  sorry....it was too long.  

Wow Saundra!  I can understand what you are going through even though I don't have a child that is going through this, but I do have the disease.  I know it's got to be tough as I know what my mom went through when I went through the surgeries and beforehand.  I know because I asked her afterwards.  I wanted to know what it was like for her.  

Let me tell you my story because I think there is some relevance here.  I first started having problems in September 2003.  I had tachycardia (heart rate is way too fast for rest and my blood pressure bottom number was 263) and it's a wonder I didn't die.  They only did a CAT Scan of my brain and fought to find some blood pressure medicine that would get my blood pressure down.  I was released from ER in the same day.  From there I visited ER a total of 4 more times and still nothing could be found.  I followed up with my regular doctors and they just kept changing my blood pressure medicine and it still was never right.  From this point I began having other problems.  Every time that I would go to the hospital, they would look at me like Uh oh....here she comes again or that I was imagining all of the things I was going through.

Then in September of 2004, I had my first TIA at work and was taken to George Washington University Hospital.  After they admitted me, a doctor came in and told me that there is definitely something wrong with me and that we were going to get to the bottom of it.  I thought....finally...someone believes me.  I had a series of tests which included a CAT Scan, MRI/MRA, spinal tap, blood work, angiogram, and numerous other tests.  They could not find anything wrong, but were at least on the right track.  It turned out that while I was in the hospital I had a small stroke and didn't even know it.  I was discharged from the hospital at this point on a home blood thinner injection twice a day.  At this point they were on the assumption that I had a vascular disease and were trying to decide whether to start steroids.  

The second time I went into ER at Georgetown, I was in ER for most of the time and finally admitted to my own room.  This is when they first diagnosed me with moyamoya thanks to the neurosurgeon that looked at my scans.  One of my bosses was the one that brought all the information about moyamoya to me and that is how I found this website.  However, when I went in for my consultation with the neurosurgeon, his response to me was that he was surprised that I had not had a severe stroke yet and that he would like for me to come back in 6 weeks to see how things are going as he didn't want to do surgeries while I was still having active TIA's.  I came out of that meeting feeling deflated and almost defeated.  But I didn't let that stop me.  The next day I sent all my scans out to Dr. Steinberg's office for a second opinion and had his answer the following day.  I definitely had moyamoya on both sides of my brain and within a couple weeks, I had my surgeries scheduled.  

My first surgery went really well, but I had complications with the second surgery.  When I came out of the surgery, I couldn't talk or swallow.  It was so very frustrating.  I eventally gained that back, but it took a couple of days.  On my flight home, I started feeling nauseous and wasn't walking like normal.  The second day home, I fell in my bedroom and had a stroke.  I didn't want to go to the hospital at all.  I'd already been there enough.  But I went, despite my stubborness.  

I was transferred to UVA in Charlottesville, VA, to be seen by a neurologist.  It was determined that I had a dropped foot and would need physical therapy.  So they put me in a seperate facility...as an inpatient where I was for 9 days.  On the 9th day, I discovered that I had a blood clot in my left leg on top of everything else.  I only had one more day in the physical therapy place and I would have been discharged.  As I waited for my mom to come to the hospital, she found me just bawling!  I was so upset and felt I had finally been defeated.  I knew that I couldn't take much more if it were to happen.  But thanks to my mom and brother, they made me realize that I survived the surgeries for a reason and that I still had something important to do on this Earth.  I realized, that this too, would pass.  

I then went into outpatient physical therapy and have about 100% percent of my foot strength back.  Balance is still an issue, but I keep working on it everyday.  I've been back at work part-time for 3 weeks now and will be going back full-time next week.  

Thanks so much for all your responses it amazes me each time I see more. Yes, my son is in PT, each time he suffers another stroke it seems all the progress is washed away. Thanks for the PC info cause I'm not smart about anthing on the PC. Took me an hour to write you my sons story. I finally talked in the chatroom lastnight and had a wonderful time. I cant believe so many people feel the same way have the same thoughts and worries. Thanks for the support, we go back to Gainesville tommorow for check-up. I'll talk again Thursday. Again, thank you, E-mail is Shnay1173@aol.com is that what you were asking for (sorry not sure)

Saundra,I'm glad to ehar your son will be returning to school.I know how hard the waiting is but it does take time.I watched Kahtleen sooooo carefully after surgery.It was ahrd to send her to school but I too monitered ehr carefully, and the school was great they put up with me being there all the time.(or maybe they were relieved to ahve me there,they were a little scared by the whole thing too).She only made it till about 12-1:00 the first year.She still tires easily(but she ahs a real busy day with a lot of therapy still). She also tires more easily when the weather gets warm.Keep us posted about how school goes.Keeping you and your family in my prayers.
Mary Grace