Linda...

i was hoping we would get to meet each other, but i understand how things change, who knows Holly and i might be back down there that week for another angiogram if they want another one.  Holly's previous neurosurgeon called friday to see how things are going.  She is with Valley Childrens Hospital in Madera.  Some days seem to be better then others..some days i just feel rotten and don't understand things.  We are in the process of moving in a couple months and all this combined has really taken its toll on us.  I am nervous about going for the test next week, i don't drive in the bay area traffic much..we'll see how it goes.  Hope to talk to you soon and hope this note finds you all well.

Hillary and family

Hi Hillary and Linda and Jack-----our prayers are with all of you.  I am also interested to know all of the details of your Stanford experience.  Don't worry (easier said than done, I know)  God will be with you all the way, plus you have all of us praying for you.  Please keep up posted with all the detals.  Are you seeing Dr. Steinberg? Good night and God Bless.  PatM

Hi HIllary-----to the best of my knowledge, a blood flow supply analysis is done by way of a CT scan.....For example, I had EDAS surgery on the right side of my brain on April 16th; Before my neurourgeon, Dr. Connolly will do the EDAS surgery on the left side of my brain using the superficial temporal artery on the left side, he wants to make sure that there is blood flow on the right side and, he wants to make sure that I did not develop a subdural hematoma during the surgery on the right side...he is almost positive that I did not, or I would already be having problems.  My CT scan blood flow supply analysis is tentatively scheduled for May 21st.  EDAS surgery on the left side is scheduled for  JUne 4th......I hope this explanation helps......it just slipped my mind....who is your neurosurgeon?  Dr. Connolly is absolutely the best for adults (52 surgeries, and still counting) and Dr. Neil A. Feldstein is the best pediatric neurosurgeon I know of. (more than 70 surgeries under his belt).  If you need a 2nd or 3rd opinion, Dr. Connolly can be reached at esc5@columbia.edu and DR. Feldstein can be reached at naf6@columbia.edu.  Tell them Pat Martin sent you......Be well.

By the way, Hillary, my sister is Diane Main, who lives in San Jose, CA.  If you need a place to stay that is close to NY Presbyterian Hospital, you can stay with me and I can drive you in (or have my friend or my brother drive you in if I have staples in my head after surgery---they are both familiar with where to go)  My sister, Diane, can tell you that I have many bedrooms in my house and many bathrooms.......and, we have a very relaxing home on 1 acre of property where you can rest and relax.....all you need right now is the airfare and we can even arrange to have you picked up at Newark Airport....I am serious, Hillary....let me know.   God Bless. PatM

Linda and Jack

I believe Holly and I will be there next week as well.  We will be doing her pre-op physical on the 11th or the 12th.  Not sure yet, but waiting for Margie to call me back.  I talked to Teresa on the phone when all this started but Joli has been our nurse thats been calling us mostly.  Both are very helpful.  Maybe we can still meet next week.  I'll let you know for sure when it is.

Pat
Thank you very much for the offer, i truly appreciate it.  Our doctor is Dr. Steinberg @ Stanford. 

You all have been very helpful throughout this.

Hi Hillary,

I believe the blood flow study at Stanford is the SPECT scan.  A very boring test but not a big deal.  You get a drip, lay around for awhile and then have pictures taken for awhile.  The second part of the study you get a drip, lay around, get Diamox and then get pictures taken.  It's a lot of laying around and some people (myself included) feel a little sick from the Diamox but it's not horrible just uncomfortable.   And the test shows just what it says- the flow of blood- although the Diamox simulates activity by increasing oxygen to the brain.  So it basically shows the blood flow to the brain at rest and under activity.  Does that make any sense?  DJ has information about the tests under the links and he has pictures of his SPECT under "My Pictures". 

I am extremely pleased that Holly is going to Stanford.  She is in wonderful hands- no worries! ; 
Lisa

Hillary~
Jack and I wrote down your new Stanford appt. date. We'll be there too. We'll send you our hotel site once we figure it out.

Best wishes for tomorrow.
Extra hugs for you and Holly.
Was nice chatting today.
You are a very brave, strong and intelligent woman. No doubt that Holly has those qualities too.

Love,
LA (Linda ~~~~  Jack sends love too)

well everyone, my stomach is a bundle of nerves, holly and i are leaving this morning, and coming home tomorrow.  will be the first time i haven't had my mom with me during a test or appointment.  she is staying home to take care of my older daughter so she won't miss so much school. 

will catch up on everything tomorrow night when i get home, hope everyones day goes well.


hillary and family

yayyy we are home, things went well the last couple of days, although i have no idea what the test showed, they said they would give it to the doctor.  we have a bunch of appointments next wed.  then surgery the following week, and the week after.  so far they do not need to do another angiogram...holly is thankful for that, and so are the rest of us.

talk to you all later.
hillary

Hi everyone in California ,

I've read your personal messages and these postings. I'm 20 minutes away from Stanford and am definitely interested in meeting with you. Can you tell me when you scheduled to meet, and maybe I can join you?

Hugs and best wishes,
Connie