Hi,

I’m scheduled to have my left side by pass in Stanford on 7/29/09. I’m anxiously expecting the “package” from Bob. But I do have couple of questions to ask and they might be only answered from a person who has MM and experienced those tests in real.

1)      I’m planning to go Stanford alone one week before the scheduled D-day.  Is it possible to handle all the tests by myself?  I know it sounds strange of doing so, but we do have some difficulties to make a perfect arrangement for my 1.5 year old son. It will be too much trouble to bring him alone with me, so I believe it’s better to let him staying at home (and daycare) during my absence without introducing too much drama to his little world.  Therefore I’d want my husband to stay home with my son one more week and only come to Stanford before the surgery day.  My friends in bay area can pick me up after the angiogram.  Is this doable? What’s the rest requirement in Stanford after Angiogram? Is it OK for me to rest in hotel alone?

2)      I had my right side done last year in Japan. So I’m familiar with MRI/MRA, Angiogram and other regular lab tests. But I had Xenon CT instead of SPECT.  Can anybody tell me what kind of feeling I’m expecting during SPECT? Painful? Or just little discomfort?  

3)      I have trouble sleeping recently, maybe due to too much concerns/thinking going on in my head. I also heard swooshing noise the other night. I work full time with a long distance commute, I really need good quality sleep now. I was only able to sleep less than 1 hour last night and I’m having headache now.  So my question is: is it OK for me to take a small dosage of over the counter sleeping pill?  

Thanks! I might have more questions tomorrow when I can think clear better.

Anybody else will be in Stanford at the same time of my surgery? I would love to meet some of our MM friends there.

Hi NOT SO LuckyMe,
I'd ask Teresa or Joli if they think that it is OK for you to be alone after the angiogram and other tests.

You can ask that they use an angio plug after the angiogram, in which case you can leave very shortly after the procedure. If you choose to not have the angio plug then pressure is held against the artery where the catheter was inserted for at least thirty minutes and you have to lie flat on your back without moving the leg for 4-6 hours. If the angiogram is very late in the day then that might require that you stay in the hospital overnight.

Some people have trouble after the SPECT and some after the XENON gas. I can't speak for the XENON as I don't have it due to a sulfa allergy. I have no problem with the SPECT, maybe because I am pre-medicated with Prednisone and Benadryl. My friend though has a terrible reaction and feels awful for the remainder of the day.

If you are able to stay at the Stanford Guest House, they have a bus that can take you to and from your appointments at no additional charge,

Jill MacInnes can tell you if other patients will be there at the same time you are and make arrangements for you to get together.

Best of luck with everything.
Kim

Kim,

Thanks. I'm OK with holding pressure for more than 30 minutes after angiogram.  I just don't want to bother my friends too much unless really necessary.

I've alreday book the hotel at Stanford Park Hotel. Hopefully it's not too far from the hospital.

LuckyMe

I stayed there last weekend. It's a beautiful hotel. I'm sure you'll be very comfortable there. It's about a mile or maybe a bit less from the Stanford Medical Center. I think Stanford's free Marguerite shuttle bus may stop right there. Here's the web address Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or
Kim

Hey Cherry, is that you? You're confusing me with all these identity changes!

I don't have answers to your questions, but I think Kim has them covered. As for the sleeping pills, you need to ask a professional this question.

This is great news that you're getting your second surgery in the USA. I'm assuming your medical insurance finally came to the party.

You are an extremely brave individual: Going to Japan for your first surgery practically by yourself (I seem to remember your husband was only able to be there for a couple of days) and now travelling to and going through all the tests at Stanford by yourself. A true inspiration.

I will never forget you; you were the first moyamoya person to give us a ray of hope during some very dark times.

Good luck and I look forward to your updates.

Mark (Luca's Dad)

Kim, it's good to hear that the shuttle bus might able to take me between hotel and the medical center.  I look at the detail schedule Bob emailed me last night, man, it's a lot to do every day!  Seems like I would not have time to screw around or even shopping. Hm...I guess I might not even need a rental car at this point. Or only need to rent for couple of days when my husband comes.

I'll call the hotel to check the availibility of shuttle.

Mark,

Yes, it's me, Cherry.  :P Sometimes I like to change screen names depends on my mood. Just want to add a little fun to life.

Hoestly, personaly I felt Moyamoya is not a painful disease even though it's life threatening.  As long as I'm not at the moment of collasping, I can pretty much handle everything on my own.  I have to admit, I'm a loner most of the time. I feel free and comfortable being alone especially when I'm a little sick.  I guess I don't like attention when feeling awaful.

As for the insurance part, we changed to my husband's PPO network later last year, which should allow me to go Stanford this time, theoriotically.  Bob Pulliam, the operation analyst from Dr. Steinberg's office is working on the paper work for insurance. He's pretty confident to get the approval this time. Let's cross our finger.

I came to this BBS when I have some free time at work. I know little Luca is doing well.  She's a little fighter too.  I always facinated by kids (even babies) who could fight through such a major surgery.  

LuckyMe.

Cherry,

After your angiogram they probably will not allow you to stay alone. At least they did not allow me to stay alone for 24 hours. I had to rest for 24 hours and then take it easy from there with no lifting greater than 15 lbs for 5 to 7 days. I just had mine done at Stanford last Tuesday.

After the SPECT scan I felt absolutely horrible for the remainder of the day. I do everyday but every day is different. All other tests are okay. During the SPECT with the Diamox, I felt whoozy and had to go to the bathroom a lot. I also felt dizzy and tingling and that went away quickly.

As far as over the counter sleeping agent. I have taken benadryl. However, it does tend to make you dryer and you need to drink more fluids after taking it, but double check with your doctor first.

Let me know if that helps.

Reagan

I just recently had surgery May 13th after my spect scan i instantly started feeling tingling on my lips and after we left the hospital it was down both arms and they didnt tell us that this could happen kinda frecked me and my husband out didnt know what was happening and ended up going to the ER just to make sure it wasnt something worse and i am glad my husband was there with me after my angigram that is the 2nd one i had.  Good luck with your surgery you are in good hands

Reagan and Darci,

Thanks for your replaies.

I saw two Angiograms on my list:
1)CT Angiogram of Head and Neck with CT perfusion. (am I allow to walk on my own after this test?)
2)Brain Cerebral Angiogram.

Which one was the one made you tingling afterward?  I only did one Angiogram for my last surgery in Japan and I didn't have any problem with that. I only stay still in bed for about 6 hours.  Hopefully I will be able to handle it by myself like I did last time.

I can find some local friend to send me back to hotel after angiogram. But I hate to ask anybody to stay with me for 24 hours.  As for SPECT, I believe I can handle the dizziness and horrible feeling as long as they are not life threatening.

Kim,

I called Stanford Park Hotel. I was told that the nearest Stanford shuttle bus station is at the end of shopping mall, which is about 10 minutes walking from the hotel.

So do you suggest me to rent a car? or can take the shuttle most of the time? Is finding a parking in the medical center will be hard?

I received the test schedule list in email last night. Almost 2 tests everyday, one in the morning, one in the afternoon. Sometimes there are about 1~2 or 2~3 hours in between.  So is it better for me to go back to hotel to rest in between? or too much commute going back and forth?  Is there any quiet rest area in campus that I can stay if it's too much trouble to go back to hotel every time?

Can anybody tell me a little detail about how the SPECT is performed?

For my Xenon CT, I had to lay down, with a gas mask on my face. Then something was injected through my arm, and I was pushed into a machine like a huge black tube.  The whole test lasted about 20~30 minutes divided into 3 "waves". There are 2 minutes rest between each wave.  The first wave is the shortest, then 2nd longer, 3rd the longest.  During each wave, once the test started, I can feel my heart being pumped faster and faster, I felt that my heart might jump out from my mouth, my head felt spinning, nauseous, feeling like riding a roller coaster downward at sound speed. At the same time, I heard huge water wave kind of whooshing noise in my head, I felt totally lost control.  I was told try not to move before it started, but I really debut whether I CAN move at that moment.  

I was told by the doctor that not many people can finish all three waves.  I couldn't help vomiting a little toward the end of the 3rd wave.  I only throw up water since I didn't eat. They have to end the test once I vomitted.  But the doctor said that the pictures they captured were good enough for surgery since I behaved well since the begining. I didn't move at all even when vomitting.

The scary part of Xenon CT for me is not dizzy or unbearable heart rate, it's the feeling of lost control scared me the most. I'm not use to it. I like to be able to control myself and my body........

After cleaned up my vomitting, I felt OK for the rest of the day. I can walk around freely, I just drunk lots of water according to the doctor to wash out the medicine in my blood.

When I went back Japan last November for check up, I took Xenon CT again.  This time since I've already known what to expect, instead of letting the medicine drove my body nuts for a wild ride, I used a little bit of Zen technic (or meditation or whatever you call it) to focus my mind on something else during the whole test, and I MADE IT!  I made through all 3 waves without moving or vomitting, and I didn't feel much discomfort.  I walked myself back to my room right after the test without any problem.

So if anyone can elibrate me a little about SPECT, I can be prepared and make the journey a little easier. :D

Thanks in advance.

LuckyMe

wait, my Brain Cerebral Angiogram is scheduled at 6:00am in the morning and notes says" after the cerebral angiogram you will be required to lay flat for a period of time up to 6 hours. Please bring some reading material with you, a CD Player or DVD player."

Does that mean I will lay flat in the test center area for 6 hours? in that case, there will be some nurses or technicians around, so I will not be alone?

"Welcome to the Ambulatory Treatment and Procedure Unit (ATP)
Stanford Hospital & Clinic"...................

This document talks a lot of in-patient or out-patient stay, but it was clearly enough to me what procedure are they talking about.  Is this surgery room?

Ask Bob about getting a pass to park in the parking garage, it's adjacent to the hospital. I think you'd be happier with a car as you'll have more autonomy to come and go as you please and go for dinner wherever you choose.
Whether or not you return to the hotel procedures kind of depends on how much time you have in between. There are plenty of comfortable places to wait and the cafeteria food is pretty good.
Kim

By the way, I forgot to tell you. The post treatment area after your angiogram has portable DVD players now to help pass the time. The movie selection isn't real exstensive, but it is better than staring at the tiles above your head.

Reagan

THE BRAIN SPECT SCAN IS THE ONE THAT MADE ME FEEL BAD BUT THE ACTUAL TEST ISNT BAD YOU LAY DOWN AND THEY JUST WANT YOU QUITE FOR IF I REMEMBER FOR AN HOUR AND IN THIS TIME THEY INJECT YOU WITH 2 DIFFERENT DRUGS AND THEN TIME FOR THE TEST YOU BASICALLY JUST LAY ON A MACHINE WERE THIS SQUARE THING ROTATES AROUND YOUR HEAD WHICH TAKES ABOUT 20 MINS AND THE ANGIGRAM I ONLY HAD TO LAY FLAT FOR 2HOURS AND THEN SIT IN A CHAIR FOR ANOTHER HOUR TO MAKE SURE PLUG HELD HOPE THIS HELPS GOOD LUCK