Update. Life is Good!

It has been four years since my last post, but I thought it would be important to update people who once in awhile come across this blog and read about our journey with Moyamoya. Moyamoya husband is doing amazing, surfing, skating, hiking and running his company. This year we welcomed a baby girl who has become our entire world. Last fall we had our 3 year check-up with Dr. Steinberg at Stanford and we were given the great news that we would not have another check-up (which includes angiograms, ct scans, etc) for another 7 years! I think this shows how much progress can be done with this condition. We know our lord and savior Jesus Christ helped lead us to an amazing team at Stanford and we hope that we can share our journey with others. In the beginning it can all be very scary, but we hope our story shows that their is amazing things that can be done. Each journey is different, but I am happy to answer questions and share our story.

Blessings,  moyamoya wife. 

Recovery Pics - Post Op, Stanford

By end of day one out of surgery moyamoya husband has more swelling...it will get bigger tomorrow and then by day 4 should go down...all is good mri looks really good - more tests will monitor new blood flow and any potential stroke threat which is a side effect of the sugery (but low chance) all looks really good....another tube removed tonight! Yeah down to 3 tubes...

MoyaMoya Husband's First Post From The General Population...

Moyamoya husband's first post!!!!



Hello everyone! FINALLY I have been allowed communication with the outside world..the ICU nurses are very keen about issuing good feeling drugs ever 2 hours, but definitely not too cool with patients talking on cell phones, texting or tick-tacking at a computer.

So the big question I keep getting asked is: "How do you feel?" Well, amazing, I am NOT in much pain. My mild discomfort basically comes from the incision that the docs made on the left side of my head. By my estimate, I have about 10 staples in my head, and 3 little titanium plates to hold the bone together. Bionic brain! So it is all this internal and external hardware that requires Vicadine or Fentadol.

Aside from the normal passing of the “healing hours” I am told that my recovery has been going very, very well. Dr. Stienberg, my awesome brain surgeon, paid me a visit directly after my procedure yesterday. He said that the blood flow in my head BEFORE surgery had been a 1 out of 26 (which doesn’t sound that pleasing); but now, AFTER my surgery, the blood flow has increased to 26 of 30 (which sounds much, much more pleasing). I am waiting for my X-ray vision to kick in, but no dice just yet…

Ok, that’s all for now – its time for another cat nap for dinner.

Pictures! Day One

Game Day: Moyamoya Surgery

Today is surgery day...moyamoya husband and I spent a lot of time praying...and we both feel very confident going into the surgery. He was admited at 5:15 am - no liquids or food since 12 midnight...he was called into the back room at 7:00 where anesthiseologists (spelling) and nurses drew blood inserted iv...they could not find a vein so finally put it in his hand vein - his spirits were good - they marked his left side where they will drill three holes open his skull and then begin the bypass...its sureal but today strength comes through our lord and savior Jesus Christ - so we are doing well...I wait now until at least 1pm....with another update.

- MoyaMoya Wife

The beginning - tests leading up to the big day

This is moyamoya husband! 29 years old...his left side of his brain has moyamoya not his right...he's lopsided :) Today moyamoya husband and moyamoya wife had the last of 3 days of extensive testings:

Cerebral Angio - All day procedure
MRI
CT Scans
Scans of legs, head

Lots of waiting for me...

Background On The MoyaMoya Disease

Not a doctor...to learn more about the moyamoya disease click here:

http://stanfordhospital.org/clinicsmedServices/COE/neuro/moyamoyaDisease/

What To Expect When Your Expecting MoyaMoya

My husband collapsed 2 months before our wedding and was diagnosed with MoyaMoya. I quickly learned about this rare disease and researched doctors from around the nation, who could best treat his condition. So now 5 months later we are treating his MoyaMoya with a surgical procedure known as an STA-MCA bypass from the renowned Dr. Gary Steinberg at Stanford Medical Center. We embark on our surgical journey to treat the condition tomorrow morning. I thought a blog on my day to day activities would archive in internet space - and help other wives, mothers, friends, sisters, and fathers understand a day by day account of MoyaMoya treatment and what they can expect.