James wrote on Dec 4^th, 2005 at 11:07pm:


Hi Jim and Kathie,

Don't mean to alarm you but it is a "big deal" in the sense that treatment by surgery should definitely be considered.  As MM is a progressive disease to sit idly by and do nothing is not a wise idea.  That said, I'm happy to hear that the doctor is now looking for another doctor to help Kathie out.

I noticed that you are from Indiana although I'm not familiar with what part.  If you are at all close to Chicago I would highly suggest my surgeon at University of Chicago.  If interested I can give you all his info.  Also, have you considered Indiana University as I know there is at least one surgeon there that is quite familiar with MM and how to treat it.  Again, I'm not sure how close you are to the University eiher.

In regards to Meghan (and your other children) a simple MRA will rule out/in MM on them too although I don't promote rushing entire families in for MRA unless they show some sort of symptoms/problems.  Headaches might be cause for checking futher into it though.  

Your entire family is in my thoughts and prayers.  Please let me know if I can be of assistance in finding a knowledgable surgeon in your area.

Lisa

Hi Jim and Kathie,

I hope you are both doing well, knowing you are probably still in a bit of shock.  I remember all too well how we felt at this same point with my daughter.  I kept thinking we would wake up and it would all be a dream, but that never quite happened. 

Bravo for getting in touch with Dr. Steinberg's office!  You will have the opinion of a true MM expert, and then be armed with the information you need to proceed.  I will be anxious to hear what he recommends - please keep us posted, o.k.?

Hang in there . . . you're definitely on the right track!  My thoughts and prayers will continue to be with you both.

from California,
Jill

Hi Jim & Kathy.

I wish I could explain it all to you, but it’s so very complicated and hard to explain exactly. (For me anyway) To understand any of that report, or MM for that matter, it is helpful to understand the circulatory system of the brain. Perhaps if I showed you a picture of the brain and the arteries, you could see where the blockages are, and understand some it. Click Here: http://www.mindsci-clinic.com/ventral_view.htm

MMD is a narrowing (blockage) of the arteries, mentioned in Kathy's report and when you lack the proper blood flow your brain needs, it’s remarkable in that, your brain then grows new vessels (MM--puff of smoke) to desperately give the brain more blood flow, but those MM vessels (collaterals) are abnormal and fragile. What’s dangerous with this disease is, although those collateral vessels are supplying blood, they could rupture, and cause a stroke.

So you can see why you were advised to see a MM specialist. They will know from experience how to best approach treatment for you. Just for the record, I gotta say, you went to the best doctor in the world, IMO. So you have so much going for you right there, along with our prayers and support.

I hope I explained some of it, so you will better understand. Any questions, don't hesitate to ask.

Mar

Hi Jim and Kathy,
I will give it a go to interpret for you.

Both of your wife's intracranial carotid arteries are narrowed (occluded). The right side does not appear to be as blocked as the left as it has "grown" a new network of blood vessels (this is the puff of smoke that develops) to try to take care of supplying the blood to the brain as the normal vessels can not do it. The rear (posterior) arteries seem to be the main blood supply to your wife's brain.
The abnormalities in the right frontal subcortex show up  what could possibly be TIA's that she may have had. (She may have experienced silent ones that she was unaware that she was having) but has not experienced an acute one (ie. a stroke)
To sum up - The front and middle cerebral arteries are all showing signs of blockage (occlusion)
She is getting blood flow (collateralization) through the rear (posterior) and basilar arteries.

Hope this is of help to you Jim - these reports can be very baffling and confusing, but I do not wish to alarm you but keep pushing to get the right treatment. I am sure that once you hear back from Dr. Steinberg, it will prompt you into getting surgery done - I know that she would be very scared and rather not go through with surgery, but it is definately the lesser of the two evils. Get in now before she experiences a major stroke.

I was in the same situation - had a minor stroke and luckily when I was admitted to hospital (which my husband insisted on doing) the neurologist there ran all the tests possible as he was looking for MM although no-one had ever heard of it here. (He had actually written a paper on it and was looking for it in my case as I was only 37 at the time)
I also had only posterior blood flow and was told how lucky I had been that I hadn't had a major stroke, and my MRI's also came up with lots of little infarctions that showed that I had experienced lots of little TIA's that I wasn't aware of. I too, used to suffer from headaches and I used to have numbness down my arms and in my fingers. My little boy was only 5 when I went through all this and I was so worried that he was going to lose his mum, and that made me more determined to come through this. I had a fabulous support network and I am here now to tell you the story. I now have another little boy - he's 2.5 years old now and my life is fuller and better than it ever has been. I had my first STA-MCA bypass in June 2001 and was advised to get my right side done although there was no rush at the time, so I opted to have it done 6 months later in late November 2001 and when they were doing the op, they found that my right side was actually worse than my original side.

Hope that you keep pushing your wife to get surgery done - she doesn't have an alternative as far as I am concerned - she needs to be there for the kidsand to see them grow up!!

I will be thinking of you both
Moira

Kathy and Jim,

It is only natural to be scared. I can relate very well.

My name is Lore and my brother Kevin (Cubbie) had two direct bypasses (STA-MCA) at Stanford in May by Dr. Steinberg. Kevin is doing very well.

Kevin had had a significant stroke 4 years ago and went misdiagnosed and undiagnosed for 4 years. When we finally got the diagnosis of MM, all doctors sent him home to live out whatever life he had left. They just were unfamiliar with MM and Kevin at that point, had a dissected right upper internal carotid artery at the bifurcation, his left artery was minus 2 bloodflow and his right artery was supplying about plus 15 bloodflow. Kevin's speach had gotten worse, his balance was way off and his skin was gray. It wasn't until I came to this site and found Dr. Steinberg and sent him Kevin's films that I got an immediate response and a positive "let's do it now".  Dr. Steinberg said Kevin needed surgery on both sides and he needed it now. I wasn't sure if we would make it to Stanford in time as it was about a 3,000 mile trip. Of course we flew to Stanford. I had prepared myself not to bring Kevin home based on his physical condition at the time. I felt if anyone could do anything for Kevin it would be Dr. Steinberg. I wasn't sure, if Dr. Steinberg would even attempt surgery on Kevin. Obviously, he took the bull by the horns and operated. The rest is history. I have said this over and over again but if it had not been for DJ and this site and me finding Dr. Steinberg, it goes without saying Kevin would not be with us today. Stanford not only has Dr. Steinberg who is a competent and brilliant surgeon, but also Teresa who is a gem. They have both devoted their lives to helping MM patients. Stanford has a complete MM program and it works like a science from the testing to the surgery to the followup. I can say, without hesitation, that you and Kathy are in the best hands. Dr. Steinberg literally saved Kevin's life and gave him a second chance. What greater gift is there but the gift of life.

You will both be in my thoughts and prayers. Please don't hesitate to ask any questions or to just talk through the waiting period as that is probably the toughest. You have a wonderful support system through the MM family. We are all here to support you through this journey.

Hugs,

Lore

Hey Jim-

I also understand your fear. My name is Christy and I was diagnosed with MM in 2003 at the age of 21. My doctors were clueless and i went nine months not knowing what to do. My life was saved by this website in March of last year. I contacted Dr. Steinberg right away and two weeks later i was in Californis for surgery. I can remember how scary it was cause all of sudden things were moving fast but now its been over a year and everything is going good. You have a wonderful doctor helping your wife! The staff at Stanford is amazing they made me feel very comfortable considering everything that was going on. We are all here for you and your wife anytime! Please keep us updates!

Christy

Hi Jim

I found several sites on google about Stanford WiFi.
Just type in Stanford WiFi to get sites.
Are prayers and thoughts are with you!

Welcome to the MM family
Kevin

Hi Jim and Kathie -

Am glad you have a travel date and surgery dates.  That really does lower the anxiety a bit, believe it or not.

There are two or three computer centers in Stanford Hospital.  In fact, one is on the third floor, around the corner and down the hall from where Kathie will be.  Jon and I spent time there, as well as Kate when she was able to get up and walk - three days after her first surgery, in fact.

Keep us posted.  Y'all are on my heart.  

Cass in Texas  

Hi Jim,

I'm so sorry to hear that Kathie is in the hospital during Christmas. It has to be a very difficult time for all. Please know you are in my thoughts and prayers and I wish Kathie a swift and full recovery.

My hope is that Kathie will get to come home for even a few hours on Christmas day.

I e-mailed Kathie through the hospital e-mail today.

Please keep us posted on Kathie's progress.

God bless and Merry Christmas to you and your family.

Hugs,

Lore

Sorry this is such a long post.  I have neglected you all.  I have compiled all of the emails that I have sent our family and friends in this post.  It kinda gives a timeline.  Again, I apologize for such a lengthy post.

Hello everyone,

Just to let everyone know, we made it here and we are okay. 
Our plane was delayed about an hour last night and it was a
bear to get our luggage.  We were very lucky to have a
family, Jill and Tara, here that was able to pick us up at
the airport and take us to our hotel. We got to the hotel at
about Midnight.  Tara, the daughter, that HAD Moya Moya so
we got to talk to them for a while.  We didn't get to bed
until about 4 A.M.  That is 6 A.M. Evansville time.

Also, I'm getting a lot of voice mails this morning.  My
phone here doesn't have good reception.  Our main contact is
going to be through email.

This afternoon we go to Stanford to check in.  Tomorrow will
be difficult for Kathie.  She has a battery of tests that
last from 6 AM until 5 PM.

I would like to thank everyone for their support and prayers
from all of our friends, both of our parents, brother,
sisters, aunts and uncles, and our Expressway Dodge Family. 
This trip to heal Kathie wouldn't be possible without
everyone's support.

Thank you and you will hear from us again soon.

Jim & Kathie Siemers

Hi ,we were at the hospital today. It is amazing. We got to
meet the staff that we have been talking to the last month.
I will have testing all day tomorrow, Saturday and all day
Monday.
Thank you to everyone for all of your love and support. The
best thing that anyone can do for me now is to help the
Grandma's help my girls.
Love,
Kathie


This morning reality is setting in.  She had an IV inserted
and after that it was like, "Okay this is really happening." 
Kathie is going through two different tests. One is a Xenon
CT scan and the angiogram.  After the angiogram she has to
lay on her back for 4-6 hours.  She cannot move at that
time. 

Tomorrow we have the day off and we are hoping she feels up
to going somewhere.  We might possibly go to San Francisco by
train.  And don't worry, we will wear matching outfits and
hold hands the whole time so no one gets any ideas. Just
kidding.

Saturday she has another MRI done in the morning.

I will keep in touch.

Jim Siemers


Thanks to my Father-in-law's laptop and WiFi Technology I
can give everyone a quick update.

Kathies Xenon CT consists of breathing Xenon gas so the CT
can better pick up her blood vessels in her brain. After
they scan her the first time they give her an injection that
opens up her blood vessels better (dilates them) so they
can see where or how the blood should be flowing on the
second scan.  Basically she is getting a before and after
picture.  This is my translation from the entire medical
lingo.  Afterwards, she will go directly to the angiogram.

The staff here is exceptional.  I cannot count already how
many times Kathie was asked what they can do to make her
more comfortable.  Everyone is very nice and courteous. 
Both the doctors and nurses explain everything they are
doing or getting ready to do in full detail. 

Jim Siemers



Hello everyone,

Yesterday was absolutely grueling.  After Kathie’s Xenon CT
scan, she wasn’t able to do the angiogram until about
12:30.  Kathie had a catheter inserted in an artery in her
groin.  Then a dye was injected into it so they could take a
better look at the blood flow in her brain.  They also do it
to take a look to see which arteries they are going to use
to do the bypass.  Kathie was finished with the angiogram at
2:35.  Moya Moya was definitely present.  2 of her arteries
are occluded and her left side is worse than her right.  She
has many types of collateral (extra veins) that are growing
before the occlusion that are supplying blood to the brain. 
The problem is that they are small, narrow and very
brittle.  These are the veins that lead to a stroke.  The
doctor that did the angiogram said that Kathie wouldn’t be
able to handle an injury or a disease or sickness that
affected her blood vessels and it would be only a matter of
time before some of these collaterals would fail.  She also
said that Kathie is an excellent candidate for the surgery
because she has very large and healthy arteries in her scalp
that they can use for the direct by-pass.  Some people don’t
have this so they have to find another way to do the by-
pass.  The doctor said that Dr. Steinberg will go over
everything in much greater detail when we have our
consultation with him Monday.

After the angiogram, Kathie had to lie on her back for 6
hours without moving.  Her head was tilted up 30 degrees but
she couldn’t lift her head and she definitely could not
mover her right leg where she had the angiogram.  She rested
pretty well after she ate.  Her last food and drink was
midnight the night before.  They gave her 1 milligram of
something that wiped her out, which was good.  She started
to have back spasms during her last 30 minutes or so before
she could get up.  She got up at 8:35 and they took her
blood pressure sitting and standing.  Then the nurses took
her for a walk.  We were finally able to leave at 9:35 and
got back to our hotel at about 10:15.  We were pretty wiped
out especially Kathie.

Let me tell everyone about the care there.  These people
absolutely love there jobs.  I have never seen so many happy
nurses.  When you need something, you press the nurse’s
button.  They don’t ask what you need over a speaker. They
come straight to your room and say, “Hi, are you okay?  What
can I do for you?”  They always smile, they are so nice, and
best of all they make Kathie feel very comfortable. 

I almost forgot to tell everyone.  Kathie’s first surgery
has been moved to Wednesday.  Dr. Steinberg was going to do
two on Tuesday and one on Wednesday.  The girl from Arkansas
that was supposed to have hers on Wednesday couldn’t come
because her retarded insurance wouldn’t let her.  This guy
named Mike from New York, I believe, was scheduled before
Kathie so he is having his on Tuesday and they moved
Kathie’s to Wednesday.  We have to wait another day which
sucks but she would have had her surgery in the afternoon on
Tuesday which would have made a very long day.  Now she has
to be there at 5:30 a.m.  This way she won’t have all
morning to think about the surgery.  She can get up and go. 
Also, maybe we can do something fun that Tuesday.

Anyway, if anyone has any questions or want to email us
back, please do so.  We love hearing from everyone.

Jim Siemers

They say you can only hold one conscious thought in your mind at a time.  Try to make it a happy one--and don't worry.

These guys are real pros and you're in good hands.  Listen to Jill and the other experienced people--and don't worry.  My own doctor told me that "everybody has something"--now your wife knows what she has, and knows what to do about it, and you've got one of the best on your side. 

Catch your breath and while she's in with the surgical team make a list of everything you want your family to do together once she's recovered.  And DON'T WORRY!

Dear Jim and Kathie -

SO glad you are out of surgery and that it went so well !

Hope your pain eases soon, Kathie.  I know that the second surgery next Tuesday will be just as great.

Y'all are on my  and in my prayers.



Cass in Dallas