Carla's MoyaMoya Story
In October of 2000 at a yearly visit to her doctor, Carla mentioned to him
that when she worked out, she had been having a loss of feeling, a numbing
in her right arm and face, and was sometimes unable to move her right arm.
Her doctor said he wanted to send her to get an MRI, we were a little
concerned but didn't think they would find anything. Carla had the MRI on
Oct. 6 2000, what we found out was that every time she had experienced
the numbing or loss of feeling in her right side, she was actually having
mini-strokes! These mini-strokes, also called TIA's, had damaged a section
of the left side of her brain about as long and thick as a man's pinkie finger
and another spot on her left frontal lobe the size of a pea, both of these
areas no longer function. Needless to say we were a little blown away! The
really amazing thing is that she really hasn't suffered many ill effects from
the strokes, aside from some loss of strength on her right side. The doctor
said that, the part of her brain with the damage has probably been starved
for blood for some time, and has relocated the funcitons normally attributed
to that area of the brain (speech, etc.) to other areas.
The day she had the MRI was on a Friday so we had all weekend to let this
sink in (and worry). On Monday, Carla's regular doctor got the ball rolling and
set up an arteriogram and an appointment with a neurologist. That Thursday
after Carla had the arteriogram the doctor gave us the results. He showed us
X-rays of the blood vessels in Carla's brain. He showed us how the main
arteries and vessels leading from her neck into her brain just kind of...
stopped, and to compensate the body had grown a web-work of smaller
vessels and capillaries to get the blood where it needed to go.
The doctor explained that Carla had been born with this problem, and that
while her history of smoking had not helped, it had not caused the condition
she had. He also said that if they had detected this when she was a child that
it would be called Moya-Moya. Apparently Moya-Moya is more of a problem in
children in Far-Eastern countries and is less common in Western countries.
Moya-Moya had been discovered back in the 40's or 50's by a Japanese
doctor, and he called it "puff of smoke" or "Moya-Moya" (Japanese for
moyamoya), because of what it looks like on the X-ray when the radioactive
material gets to the web-work of vessels in the brain during an arteriogram.

The doctor then called the neurologist and moved her appointment up to
that afternoon. The neurologist said that he would have to do more research
and get back with us. In the mean time he put Carla on Coumadin (a blood
thinner), which is often prescribed to someone prone to strokes. That
weekend we went home to recover from the arteriogram and from all the
news. We also started searching the internet for whatever we could find out
about Moya-Moya. The doctors up to this point had not officially called it
Moya-Moya, but everything that we had found out about Moya-Moya
sounded like what Carla had. We also found out that Moya-Moya is usually
detected in two age groups, children between the ages 3 and 6, and adults
ages 30 to 40yrs. of age. The next week we had an appointment with the
neurologist and presented our research and asked him what he had found
out. He agreed with us that it is Moya-Moya or "Moya-Moya like", he also
took her off of the blood thinners. The problem with Moya-Moya is that the
vessels in the brain are so small, and because of this, it is very hard to treat
it with medications. Usually if a patient is at a high risk of stroke the doctor
prescribes blood thinners to keep a clot from going into the brain, stopping up
an vessel and causing a stroke. With Moya-Moya you still have the risk of the
clot, but if you give blood thinners you run the risk of a hemorrhage or an
aneurysm. In other words, she's better off without the medications. The
doctor said that because of the rarity of Moya-Moya he was not qualified to
treat Carla and refered us to a doctor in Dallas.

The following are blog entries from during the time Carla was going through diagnosis
and treatment to present day.

11-7-00- Well, we just got back from University of Texas-Southwestern
Medical Center in Dallas
, where Carla had her appointment with the
neurologist, Dr. Thomas Kopitnik
(he now lives in Wyoming). He was very nice
and spent about an hour talking with us, Carla's mom and friend Shari went
with us. He told us that the right side of Carla's brain showed normal vascular
growth patterns, but the left side of her brain showed a "textbook" case of
Moya Moya. The next step in her treatment consist of more tests. On Friday
the 10th, Carla will go back to have a Xenon gas blood flow test. In this
procedure Carla will inhale Xenon gas, a radioactive isotope which will go into
her bloodstream, then they will monitor the blood flow in her brain. After they
get that reading, they will give her another drug that will dilate the vessels in
her brain to full capacity and take another reading. The doctor assured us
that this is safe and that he has never seen or heard of anyone having any
complications from this procedure. The reason for the test is to access the
amount of blood flow in her brain at rest and under stress. With this
information the doctor can then decide the best course of action, he said that
surgery will be a last resort. Carla will also have a NeuroPsychological test
done. This consist of testing her memory, speech and language skills. The
reason for this test is to be able to tell if things get worse. An example would
be, that her cranial blood flow may look fine but if she starts getting lost in
her own neighborhood or can't remember her dogs name, there is still a
problem that needs to be fixed. For now that's all we know. I'll keep everyone
updated as we find things out. Keep checking back....

11-13-00- Well, Carla had her Xenon gas study. Not much to say except the
drug they gave her to dilate the vessels in her brain gave her a migraine
headache for a day and a half. Hopefully we'll find out the results soon.

12-5-00- We saw the doctor today, and it looks like we're headed for surgery.
The doctor is more concerned than ever because of what the Xenon gas test
showed. If you're not familiar with the test, I explained it above. Apparently
when the blood flow in her brain max.'s out, the right side of her brain steals
blood from the left side of her brain. The doctor used a really good analogy to
explain it to us. He said its like when your in the shower and someone flushes
the toilet, the toilet steals water pressure from the shower and the shower
changes temperature. That's what has been causing Carla's TIA's, the blood
flows more freely on the right side of her brain so when the vessels on that
side of her brain open up it takes blood from the left side, then the left side of
her brain begins to shutdown from lack of oxygen. The only way to fix this is
to get more blood flow to the area, to do this they will have to "bypass" the
area where the vessels are constricted and get blood to the vessels that are
after the constriction. The doctor used another good plumbing analogy, it's
like if the pipe going from the water main on your street, to your house was
clogged, so the plumbers made a new pipe going from the street to the pipe
under kitchen sink, it doesn't matter where the flow is attached as long as it
flows. The "pipes" the Dr. is going to use are going to come from her scalp.
He will dissect two vessels out of her scalp, remove a piece of her skull,
attach the vessels to the vessels in her brain, replace the piece of her skull
leaving a hole large enough for the vessels to go through, and use staples to
hold everything together while it heals. The proceedure is called the EC-IC
. Sounds like fun... The surgery is scheduled for Wednesday Dec. 13,
I'll let you know how everything goes.

12-25-00- Merry Christmas! We made it! Carla's fine, the surgery went well,
she's in a lot of pain though. I'll give you a brief overview of all that happened
last week. The surgery was on Wed., it lasted for about 5 1/2 hours. When we
got to see her in ICU she looked amazingly well, she was alert and knew what
was going on. Through the night the swelling caught up to her though,
because the next morning her left eye was almost swollen shut. I jokingly
told her to make sure that she told people that I had nothing to do with it. The
next day she was out of ICU and in her own room. That was a rough day, they
were giving her morphine but it just didn't kill the pain, it would work for
about 15 min. and the pain would return. What did work was a strong dose of
Vicoden that had to be administered orally, the problem with that was, she
was so nauseous from the anesthesia, that she couldn't keep them down.
Once we got her nausea under control and she was able to take her pain
medication everything got a little smoother. On Friday she had another
arteriogram to see how the bypass was doing, they said that everything
looked great, and she was getting more blood flow to that side of her brain
than she had in years. Everyday she was getting stronger and I got to bring
her back home that Sunday. Carla continues to have headaches and probably
will for about a month, but everyday seems to get better, although she still
has her bad days. She is supposed to go back to Dallas on Dec. 27th to get
her staples out and have a follow up exam. The weather is supposed to get
icy so I'm not sure if we'll be able to go, we'll keep you posted on her
recovery. Carla and I would like to thank everyone for all of the prayers and
support, especially our family and friends (Julie & Shari extra especially),
your love and support mean so much to us we can't thank you enough!

06-29-02- Well, its been 2 1/2 years since her surgery and Carla is doing
great! She recently had an arteriogram and the doctors said that the bypass
looks like it's growing, and the blood flow to her brain has increased. This is
exactly what the doctors wanted to see. They said that unless she has
problems they won't need to see her for another 5 years. This was great
news for us. While she still sometimes has TIA's, they don't happen very
often, and they don't last as long as they used to. The decision to have the
surgery was a difficult one to make, but it was the best path we could have
taken. If Carla hadn't had the surgery, she probably would have had a major
stoke by now. If you, or someone you know has been diagnosed with Moya
Moya, and the doctor recommends the bypass surgery, Carla and I both
recommend you have it done. Yes, the surgery is painful and the recovery
takes time, but if you look at the effects a major stoke could have on your life
and the lives of the ones around you, the surgery doesn't look so bad. It was
the thought that her family would have to take care of her for the rest of her
life not if, but when she had a major stroke. She just didn't want that to
happen. Thankfully, we made the right decision and hopefully won't have to
go through that. While the possibility of a stoke will always be with her, the
chances of it happening are much less thanks to the surgery. This will
hopefully be the last Moya Moya update for a while. If anything new happens
I'll update this page, hopefully Carla will just keep getting better. If your
curious about how she's doing, or want to know more about our experience
with Moya Moya, send us an e-mail. I originally started this page because I
couldn't find much information on the web about Moya Moya. I just wanted
others who have the disease, or know of someone that has it, to have access
to information about what it's like to live with the disease, and to know that
there are ways to fight it. If you, or someone you know, has Moya Moya we
would love to hear from you.

03-09-04- I apologize for not updating this page in a while. Fortunately, we
haven't had much to report on the MoyaMoya front. Things have been going
extremely well for Carla. Things have been going so well in fact, that we even
decided to risk having a child. Of course we asked Carla's doctors before
going ahead with the pregnancy, but they said to go for it. They did want
Carla to meet with a perientologist (high-risk pregnancy specialist) first, and
he said that as long as we monitored her blood pressure during the
pregnancy and avoided labor by having a C-Section, everything should go
well. It did! We gave birth to our son on 12/15/03 (actually Carla and the
doctors did most of the work, but I did help!). During her pregnancy, Carla
never experienced any TIA's. This surprised us because usually a woman's
blood volume nearly doubles during pregnancy. Carla did have to be put on
bed rest in her 8th month, but this was mainly due to her having small
contractions at the time, also the doctor was treating her extra special
because of her MM. It's been over two months since Evan was born, and she
still hasn't had any recurrence of MM symptoms. If anyone is ever wondering
if they should or shouldn't have the EC-IC Bypass surgery to help with their
MM, all I can say is that it worked wonders for Carla, and so we highly
recommend it. I hope and pray that others can have the same success that
Carla had with her surgery but unfortunately things don't always work out
this well. We were fortunate that Carla only had symptoms on one side of her
brain, and we were able to catch it in time. I will continue to provide periodic
updates on Carla's condition, and with God's help they will all be as favorable
as this one. If anyone has questions about MoyaMoya, please don't hesitate
to e-mail me. I'm no doctor, but maybe our experience with MM can help
other face MM on their own terms.

07-10-2007- It has been 6 1/2 years since Carla's surgery and I'm very
pleased to say that Carla seems to be doing better every year. Her primary
neurologist in Dallas has released her and now she sees a local neurologist
yearly for checkups. Over the past two years she hasn't had any more TIA's.
She still gets tired fairly easy and she is definetley weaker on her right side
compared to her left. We continue to hope and pray that her condition
continues to improve. The EC-IC Bypass surgery has given her a normal life
and allows her to live without the constant reminder that she has MoyaMoya.
Although the surgery has vastly improved her condition, she will always be at
a higher risk of stroke than the average person and will continue to require
monitoring of her condition. It should be said that not everyone will have the
same kind of success with the sugery that Carla had, there are just too many
variables, but the EC-IC Bypass surgery is about the only treatment option
for those with MoyaMoya.

08-13-2010- It's been quite some time since I updated the website, life
keeps getting in the way.. I wish I could report that Carla has continued to
improve, but we've actually taken a few steps backward. The fatigue
problems Carla was experienceing have gotten worse and she has also
experienced several TIA's since the last update, two of them fairly major
causing some pretty major weakness on her right side. She's also
experienced some reduction in her ability to concentrate on specific tasks
and a general reduction in cognitive stamina causing her to struggle when
she needs to make decisions, find the correct words to explain something,
etc. In 2008 Carla reduced the number of hours she was working in hopes
that it would help her maintain her level of cognitive function, but she has
continued to struggle and her doctors have recommended that she stop
working if she wants to maintain what she has. This has been a tough process
but we feel that we've made the right decision for us. We both want her to be
there when Evan graduates High School and College, gets married, has kids,
etc.. I'll keep posting to the webpage as things change (hopefully for the