my daughter has moyamoya like vessels. she is 2.5 in the seattle area. She also has PHACE syndrome and has a pacemaker making MRIMRA impossible att his time. She has a complicated health history. She had Doppler every 3 mths and now her dr s have told me to start consolations with pediatric neurosurgeons. Due to my daughter complicated health history I am hoping to consult with  more than one surgeon and would greatly appreciate some names of doctors who have worked with specialized cases. please email if you can help
wyndilee@yahoo.com

Hemangioma
The external hemangiomas responded well to steroids and laser treatments. The hemangiomas on her ear drum have caused some hearing loss. She has hemangiomas throughout her neck, nose airway and saliva glands. She was on a N-G feeding tube for two months before she was strong enough to drink from a bottle. Izabell was not able to swallow thin liquids and required all liquids to be thickened with special gels to protect her from aspirating the fluids into her lungs.  This was needed for about 2 years. She has had three surgeries to remove the hemangiomas from her airway. She also had surgery to remove some of the internal hemangiomas in her nose because they separated and closed off her nasal septum making it difficult to breath. Not all of the internal hemangiomas could be removed and the scar tissue from the surgeries also narrow her small airway.  Her airway is very narrow and will be monitored. She might need reconstructive surgeries to help rebuild her airway in the future but we are hoping that as she grows her airway with will also grow and heal. She has had three laser treatments on her superficial hemangiomas and has healed well after each one.  She had sleep apnea and slept with a pulse ox monitor on for about a year.

Arterial Defects
Izabell has many arterial and venous defects. She has very narrow and twisted arteries which increase her risk for stroke and aneurysm . She is being followed by neurology and is on aspirin daily to help lower her risk.      She is followed with Doppler imaging at this time she is going every 3 months because she had some recent changes in her vessels .She is followed by neurology because of her arterial defects and venous pooling. We are now starting to consult with surgeons at our Drs suggetion.
                                         
Cardiac Defects
Izaebll was born with an interrupted aortic arch, and a large ventricle septic defect. When she was six weeks old she was admitted to the hospital with severe congestive heart failure and underwent open heart surgery to repair these defects. She was in the ICU for 6 weeks. She  had an open chest for a week to take the pressure of her heart and heal her body heal before her chest could be closed after surgery. She got complete heart block from the surgery and now has a pacemaker. She has also had two heart catheter surgeries. She has a narrow ventricular outflow track and mitral valve prolapse and Aortic valve regurgitation  that is being closely monitored by her care team. She will need surgery every 4-5 years to replace her pacemaker. She is  likely to need another OHS in her adult years to either repair or replace the valves. She will also need a stent placed when she is older to open her arch more. She has a damaged vocal cord from the breathing tubes used during surgery but has regained most of her voice.

Eye Anomalies
Izabell is far sighted and has hemangiomas on her eyes. She received glasses at 11mths and wears them faithfully.

Izabell has Hip Dysplasia
She was in the pavlick harness which help her hip sockets form and is still followed by orthopedics.

Izabell has neuromuscular scoliosis.
She has a s shape curve 45 and 38 degree curves. She is going to be in a TLSO brace in two weeks and we are hoping this will work. If her curve progresses in the brace or if she has any trouble breathing ect in the brace her orthopedic surgeon has said that she may need to have a growth rod system which will require multiple surgeries.
                                                                 
Medications
enalapril 3ml twice a day
Aspirin ½ a 81mg tablet once day in evenings

Hi Wyndilee

I don't have much knowledge of Dr's in the US but Dr Steinberg appears to be the most recognised when it comes to moyamoya. There is also a section on this website that deals with Dr's with moyamoya experience.

Watching our little ones suffer is the most difficult thing in the world. I wish you all the best going forward.

Mark

Wyndilee~

I heart and love goes out to you, your daughter, and your family.
I hope you find the doctor(s) you need.
I am an a moyamoya patient of Dr. Steinbergs. I know that there are a few other doctors as well.
Steinbergs phone number is (650) 723-5575 at Stanford Hospital.

Mostly just sending my love to you,

Linda (LA)

Hi Guys

Just wanted to let you know that I've been looking at Izzy's site. She's beautiful and extremely fortunate to have you guys as parents.

Izzy (and you) must be sooo sick of hospital. You've certainly done your time. We've only had it on and off for a few months and I'll be very happy to never see a ward again. I hope you find the right Dr's for you.

Look after your special one and spoil her rotten over the festive season, it's worth it.

Mark (Luca's Dad)

Hi Izzy's Mom,
I live near Seattle on Whidbey Island. I'm so sorry to hear that your daughter is now dealing with Moyamoya. I had surgeries with Dr. Steinberg at Standford. He attends to both adults and children. I've heard that Dr. Richard Ellenbogen at Children's Hospital here in Seattle has performed surgery for Moyamoya. I know he's listed in Seattle Metropolitan Magazine as one of Seattle's top doc's. I'm not sure how many successful surgeries he's performed for Moyamoya. I know that Dr. Steinberg has completed the procedure nearly 700 times. I hope that all goes well for Izzy.
Kim