My daughter (8yrs old) had surgery last Tues with Dr Smith from Boston Childrens. Love him and Dr Scott. She did great and was out of hospital by Friday. We live in WI and feel a little lost as to where she should be post-op. She has had a few TIA type episodes (we know this can still go on), is very tired, has pain behind incision. However, incision looks good. She just seems rather out of it still. We hope this is normal. Please tell me how your recovery went. It's been 10 post-op. Any info will be helpful! Thank you!

Diane

Hi Diane!

I have a 9 year old daughter with Moyamoya. She had her first surgery in 2005 and had a stroke 24hrs after, had her second surgery in 2007 and a stroke 6 days later. She has recovered very well but was in hospital a couple weeks each time due to her strokes. She came home very tired, really needing reminders to say hydrated...should drink atleast 1 to 2 litres of liquid daily. I remember after the first surgery--it was in May 2005........I only let her go back to school with me there.......for a few hours at at time......in late June. She had the summer to recover........continued to have some significant TIA's a year later...so they did a modified ENGPS.......to get at the anterior and posterior area...after her 2nd surgery, I kept her home for awhile to recover......only let her go back to school half days for quite awhile.............she is now in great shape. Her last MRI and MRI/CVR were very good.......though still some progression of the disease........her neurosurgeon thinks she should be fine for years to come...........though I am hoping he will still do annual MRI's.  She still continues to have some residual weakness from stroke but it does not really limit her.....and she can still hyperventilate when upset....and have weakness but not as many episodes as before......though fatigue and hydration are still something we monitor.

She does well at school, takes dance and piano. We feel very blessed........we are always optimistic but still vigilant and cautious too ........if that makes any sense. I still report any "episodes' i'm concerned about to our Stroke Team and neurosurgeon. She is still on 150 mg tegretol twice daily and aspirin .

Best of luck!

Dawn

Good luck in your daughters recovery journey.

Hello Diane,

 I was surprised that your daughter and my son had a surgery at same date! ^^ Even though it is very hard to see our lovely children gets sick and suffer from it but as a parent, we know what is best for our child and we always wants to give them a best. That's the whole reason why we decide to give them a surgery.  So let's pray to God that everything will be ok ^^

Well 10 days after the surgery, Josh had 1 TIA on his left side of mouth less than 10 mins. and next day he had a migraine headache about few hours... Other than that he is doing fine. We are trying very hard to give him a lots of water and also trying to calm him down. It is so hard to slow down the 5 year old boy! Since Josh love to running around the house with his younger brother.^^;  I think he had last TIA  because he play with his brother very hard that day. 

Our doctor and we were very pleased that Josh is recovering so well but now I am concern because he had TIA few days ago from the side of brain that he haven't got an operation on. He needs to get one more surgery on Oct. 22 but I will talk to Dr. Sandberg on Monday to see if we can do it earlier. 

Josh did operation on his left side of brain and his TIA symptom came from right side of brain so my wife and I are very worry. That's why we wants to do surgery before Oct. 22. If Dr. Sandberg is ok with it. Josh did surgery at Miami children's hospital and we trust Dr. Sandberg 100 % !  

We almost went to Boston and do an operation by Dr. Scott but after we spoke with Dr. Sandberg we decide to do it here in Miami. So far we are thankful to God and I am sure you are in good hand, too! 

Doctor told us that it will take up to 6 months from surgery that we can see the result from it. Few TIA's are expected during that period of time.

 I know it is very hard and scare that every time they had TIA's but let's pray to God and asking for his grace! Also, I think we should let doctor know that they had TIA and asking for their advise and it is good to keep a record of the date that TIA symptoms occur.

Thankfully Josh didn't had any major stroke and he is recovering from the surgery very well and I wish your daughter will have the same result. We are going to keep praying and everything will go well, because God is merciful. Take care and God bless you!

Best,
Kim family