Getting Ready for Stanford

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Getting Ready for Stanford

Postby Sharon » Sat Jun 06, 2009 11:35 am

I noticed that Mark and I sort of hijacked Holly's thread by discussing the medical records he should take. So, I decided to start a new thread to help those who are on their way to Stanford. I think having the tips and suggestions in one place will help those who are on their way. This is also a good place to ask the general questions......

Here are some topics that could be (and have been) discussed:
Accomodations
Airlines
Maps
Stanford Campus
Handicap Facilities/Parking
Testing - MRI's/MRV's; Ultrasound
Consultation with Dr. Dake
Procedure
Overnight Hospital
Medical records
Follow-up at Home

If Jeff, Marie, and Holly do not mind, I will copy and paste some of their tips they have already offered on other threads. Okay, you three?

Sharon
User avatar
Sharon
Family Elder
 
Posts: 1239
Joined: Sun Nov 07, 2004 3:00 pm
Location: Colorado

Advertisement

Postby mrhodes40 » Sat Jun 06, 2009 1:20 pm

Goodness thanks Sharon! Good plan anything to help people get through the thing with more known. I wish I was going next week! My friend is going in about 5 weeks she is not a TIMS member.
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics
User avatar
mrhodes40
Family Elder
 
Posts: 2066
Joined: Thu Sep 23, 2004 2:00 pm
Location: USA

Postby cheerleader » Sat Jun 06, 2009 1:37 pm

Great idea, Sharon!!! Go for it. Yeah, Jeff would agree with your comment, Marie...seems the good doc and all involved are learning more with each procedure. But, as I've told Jeff...somebody had to go first :)

Airport/Getting to Stanford -
For those flying, San Jose is a closer and more convenient airport than San Francisco. Jeff took taxis, so he wouldn't have to deal with driving and parking. $55 to Stanford one way from airport. For those renting cars, there are many available agencies at the airport. It is a 20 mile (half hour) drive.

carry on,
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
User avatar
cheerleader
Family Elder
 
Posts: 5077
Joined: Mon Sep 10, 2007 2:00 pm
Location: southern California

Postby Sharon » Sat Jun 06, 2009 6:02 pm

Accomodations

Ask Angela for a listing of the hotels/motels in the area. She will email it to you. When making your reservations be sure to ask for the Stanford Hospital discount. Also, check on late departures. If you stay in the hospital overnight after your procedure, you will probably not get released until after 9:00 am. You may need time back at your hotel after the hospital. I stayed at the Creekside Inn - late departure was 3:00 pm -we were not charged for the extra day. This worked out perfect - I was able to have a little time to rest before taking off to the San Jose airport for our flight home. The Creekside Inn is about five minutes from the hospital - a deli with great sandwiches is next door and there is also a restaurant - a little pricey but food was good. Very friendly staff - wanted to make sure that my needs were taken care of. There is a free shuttle you can reserve for transportation to and from the hospital. I would imagine all the hotels offer this. The picture on the Internet of the Creekside is a tad misleading, but all in all we found it quite comfortable and there were two small children in my party.

Marie posted:
We're staying at the Sheraton right across the street. Disabled rooms on the top floor and pretty nice, though like most able bodied people they assume that a disabled person has enough mobility to get from a car to a room that is--I swear--1/4 mile all told from disabled parking to door....labrinthine halls acres to walk to get to the oh so pretty elevator. Ugh. If I used a electric chair it would not have been a deal but since I sort-a kinda walk, it was tough. I understand tomorow we will be all over the medical campus too.

am with you but I was unclear--the disabled is clos to the door but the hotel walking inside is the chore, the leevators are far far from the door that let you in then the disabled room very far from the elevators on he top floor, so all that 1/4 mile of walking is inside!!

We may request groud floor room near the entrance, t his will be especially good if I have surgery tomorrow cause I do nto see right now how I would "walk" to the room we are in now with grogginess.

That having been said the beds are comfortable, clean, the rooms pleasant and overall it is a nice hotel. TUrnes out the "Trader Joes" is "coming soon" Dang! there goes the handy organic connectioon!


Marie had also posted that Sheraton had a "birthday discount" - I believe it is if you stay two nights - you pay the amount for the year you were born.
User avatar
Sharon
Family Elder
 
Posts: 1239
Joined: Sun Nov 07, 2004 3:00 pm
Location: Colorado

Postby mrhodes40 » Sat Jun 06, 2009 7:51 pm

Let me add to that we did request a room very close to the disabled parking and they were glad to accomodate us when we explained I was having surgery and could not make the long walk to the elevators then to the top floor then to the disabled room. The ground floor room was nice and very quiet. They did have internet specials and there was a AAA discount, a birthday special, and several other discounts tht did not apply to me. The front desk said they have a shuttle that runs to the medical center reglarly all day too, though I did not use that. it may make it possible for someoone to take a taxi to the hotel then have the shuttle to get to the hospital thus avoiding a rental car.

We left for home Friday. I slept wednesday and thursday: I still don't understand how people went home sooner, but then again I had the belly problem (still on rest), so a couple of days in a big comfortable bed was good.

There's a safeway about a mile down Elcamino Real. Bill got groceries from there so we had drinks, bagels and fruit to eat in the room. We felt good about our arrangements...
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics
User avatar
mrhodes40
Family Elder
 
Posts: 2066
Joined: Thu Sep 23, 2004 2:00 pm
Location: USA

Postby peekaboo » Sun Jun 07, 2009 5:47 am

sharon worte:

If Jeff, Marie, and Holly do not mind, I will copy and paste some of their tips they have already offered on other threads. Okay, you three?


Fly with it :)
User avatar
peekaboo
Family Elder
 
Posts: 623
Joined: Sun Feb 08, 2009 3:00 pm
Location: Arizona

Postby Sharon » Sun Jun 07, 2009 5:54 am

Thanks Marie for your post -

The "tip" here is to check with your hotel to see where the handicap parking and the disabled rooms are BEFORE you get to Stanford. Marie's experience had clued me into asking for a ground floor room which was easily accessibile to the parking.
User avatar
Sharon
Family Elder
 
Posts: 1239
Joined: Sun Nov 07, 2004 3:00 pm
Location: Colorado

Postby Sharon » Sun Jun 07, 2009 8:04 am

AIRLINES

If you are flying, I would suggest that you request a wheelchair from your airline to get you through the airport for your trip home. I would not have been able to navigate the airport on my wobbly legs. Actually, it was kind of nice - you do not have to wait in the security line -- you go in front of everyone.

I am still amazed that Jeff was able to get himself out of the hospital, to the airport, and on the plane by himself -- my head was so-o fuzzy with the pain killers -- I would have struggled.
User avatar
Sharon
Family Elder
 
Posts: 1239
Joined: Sun Nov 07, 2004 3:00 pm
Location: Colorado

Postby Arcee » Sun Jun 07, 2009 9:53 am

Thanks so much for organizing this thread. It's really helpful to have. And it is just so exciting to read about your experiences and how you all are doing prior to heading that way myself.
- Randi
User avatar
Arcee
Family Elder
 
Posts: 338
Joined: Wed Jan 05, 2005 3:00 pm
Location: Massachusetts, USA

Postby cheerleader » Sun Jun 07, 2009 12:41 pm

Sharon wrote:
I am still amazed that Jeff was able to get himself out of the hospital, to the airport, and on the plane by himself -- my head was so-o fuzzy with the pain killers -- I would have struggled.


Jeff says that's the way his head has felt for 2 years, and he's been traveling, working, living in a constant fog. He took a cab to the airport and kinda floated thru...only a one hour flight and I picked him up at the airport. He was bubbly and talking on the way home....hasn't stopped since :) -the fog had lifted for him, even on painkillers.
But most people would not want to fly the next day.
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
User avatar
cheerleader
Family Elder
 
Posts: 5077
Joined: Mon Sep 10, 2007 2:00 pm
Location: southern California

Postby Sharon » Mon Jun 08, 2009 8:46 am

MAPS - STANFORD HOSPITAL

Suggestion: take time to go to the Stanford campus before you are scheduled. Familiarize yourself with where the parking is - remember the day of your tests and consultations is a long day - think about this when you are parking - you may not want to walk a long ways at 4 or 5 in the afternoon.

Here is a link to a map of the Stanford Medical Center and surrounding area.
http://stanfordhospital.org/directions/maps/SHC.html

If you go to the Stanford website - there are also maps of each floor of the hospital.

I believe that Jeff, Marie, and Holly had all their tests in the main hospital. I did not - my MRI/MRV was in the Blake Wilbur clinic which is on Blake Wilbur drive, across the street from the patient parking. PM me if you get scheduled the same - I will try to give you some tips.

After leaving the Blake Wilbur clinic, we drove back around the hospital to the Emergency exit. The Ultrasound clinic is closer to the Emergency entrance. After the Ultrasound, I went to The Falk Bldg to Dr. Dake's office - it is on the same side as the Emergency entrance.

The technician at the MRI suggested that we use the Emergency entrance and he also suggested the valet parking for $8/day. This worked out perfect for us.

HANDICAP PARKING There is handicap parking at both the main entrance and the emergency entrance. Be sure to bring your handicap sticker with you if you have one.
STANFORD SHUTTLE There are large golf carts that are buzzing around the main medical campus. People were hopping off and on these shuttles - we did not use, but it seems to me they would be convenient
User avatar
Sharon
Family Elder
 
Posts: 1239
Joined: Sun Nov 07, 2004 3:00 pm
Location: Colorado

Postby Sharon » Tue Jun 16, 2009 12:04 pm

I thought I would "bump" this thread - Loobie and Islandgirl will be going to Stanford the first of July. I will try to gather the information from Jeff, Marie, Holly and myself to help their journey.

TESTING

You will be tested with the ultrasound (Doppler) and will have an MRI/MRV in the "tube" - this will be at the same time.
I had previously posted

THE TESTS The tests are basically the same thing we have all been through before except for the breathing exercise in the "tube" (Practice your breathing - you will be asked to "breathe in, breathe out, breathe in, hold your breath". I did not have any problems (thanks to Pilates and Yoga) but evidently some people do. ) Get a good nights rest before you start out - the anxiety level builds as you go through the day - by the time you speak with Dr. Dake you will probably be "wrung out".

THE CONSULTATION Start your list of questions now - review it as time goes by. You may find some answers here on TIMS so you can cross them off - the rest you will be able to ask Dr. Dake. Dr. Dake was very gracious - he wants you to feel confident in him and the procedure and realizes the importance of that. He will spend as much time as needed. Throughout this whole process you need to take control - be proactive.


Jeff wrote
There were 2 things that convinced me almost immediately to go forward with my stent surgery later that day. Sitting in Dr. Dake's office we could so clearly see what were very damaged jugulars - the right constricted, and the left, basically a tangled mess! Here I was, starting at something so obviously broken in my anatomy - the veins draining my brian - but unlike those boatload of MS lesions in my head, we could actually DO something about this, as Dr. Dake said 'I can fix that' - wow.. something we don't often get to hear from our neurologists.

Another confidence booster for me was Dr. Dake himself. He was truly excited, compassionate, completely interested in my precise case history, and inquisitive about progress in the best possible way. And, fresh form a visit with Dr. Zamboni in London - he had a lot of conviction and confidence that this might be a key to helping us. All three of us were so surprised to see such a clear example of yet another ms case with irregular veins on our 1st try.


Marie wrote
Posted: Tue May 19, 2009 11:41 am Post subject:

--------------------------------------------------------------------------------

Hey, it's me ..... my computer is on the fritz so if you don't hear from me that is why.

I am scheduled for surgery tomorrow at 6am.

Stunningly, I have the same problem Jeff did, severe bilateral jugular stenosis, and I will have bilat stents- or maybe one stent we'll see how it is. Dr Dake thought he'd get to see something else in me but not so. The vertebrals were acting the way they were because they were overloaded taking the jugular load. I too have a lot of collateral circulation so that shows the venous drainage seeking a new route to get back to the heart.
[/quote
PROCEDURE

Jeff wrote
Because my left jugular was especially tricky to address, I was in surgery about 4 1/2 hours. I was never really 'scared' but more fascinated with how miraculous all of the technology and expertise being deployed were. Lying flat, it was hard to see anything of what was going on, but I could 'hear' it.

Pain was intense in my head when we were pressurizing the veins and then when the stents go in. One unexpected difficulty was that I had bouts of really bad nausea feelings at times in the OR. (it came and went, but was tough, although I didn't actually throw up). During my recovery week, there was stomach discomfort for about 5 days, which finally broke, along with the throbbing head pain. In discussing this a few days after surgery, Dr. Dake surmised that it might possibly a result of proximity we were to spinal fluid regulation in the head, or the pressure changes occuring and being adjusted to due to the new circulation pattern. The very minor incision (at the groin) was very tiny, and healed very quickly.

I spent the night there - I was quite exhausted and a bit dizzy from all of the IV pain killers. and slept a lot (good call)


Sharon wrote
THE PROCEDURE You will be awake during the procedure -conscious sedation. Dr. Dake will be asking you to do the breathing exercise again. I was amazed at the operating room - there were big screen control panels everywhere. I may have been in a different OR than Jeff and Marie - I was not in the one on the 2nd floor - it was busy, so they took me on a five minute ride through hallways and lobbies to another OR. I did not feel anything as far as the probe going into my groin or it going through the veins. When the stents were being placed it was a bit uncomfortable - it felt like he was tightening something -there was also a low volume noise associated with the tightening "thing". Oh, I must have started coming out of the sedation too soon - Dr. Dake told the nurse to give me some more - he assured me that everything was just fine but he knew that I was not sedated enough because I was keeping my eyes open too much. I think I was trying to concentrate on what the doctors were saying - they are just talking away, discussing what they are seeing on the big screens - making adjustments -I found this to be fascinating (even though I did not understand most of what was going on). At the end of the procedure you will be given some pills to start the blood thinning.

Marie's sister wrote
am Terry, Marie's sister, and she asked me to come post a little about what is going on. She is resting comfortably at the hospital, they are keeping her for the night. She had duel stents put in, and the pressure in the blood vessel (on the brain-side) went from 13 in one vein and 5 in the other to 2 and 1 after the stents were put in (don't ask me the scale, cuz I am not sure). She has a headache, and is nauseous, but is crunching her dinner in my ear as I write, so I think she is going to be okay!... it has been a loooong day!


Marie wrote
Second of all this is real surgery. NO kidding.

Third of all Dr Dake stresses that we have no way of knowing if this *will*
help MS. However I did ask him if it were his MRV showing that blockage would he do it, and he said yes absolutely. But he wants to make sure there are no false promises implied. Jeff's recent post very clearly made that case...



Jeff wrote
Back home, there we a few days of panic - where it was like, 'what the hell have we done here'?? - anybody with ms knows a 'new' pain always brings a bit of panic - like, 'oh no, a new symptom I'll have to manage from now on. So now my head feels like it's going to explode, and my stomach aches, great!


this is surgery, you ain't goin' to feel very good. I would plan on staying at least an extra day - maybe not in the hospital, but at least in the area. If you are flying and need to change your plane reservations, Angela will write a letter to the airlines. I was flying Southwest - we changed our flight to the next day - handed the letter to the Southwest clerks - no problem, no extra charges.

I know this is a long post, but I think there is useful information. Hope it helps!

Holly, Jeff and Marie - please add anything else you can think of.

Sharon
User avatar
Sharon
Family Elder
 
Posts: 1239
Joined: Sun Nov 07, 2004 3:00 pm
Location: Colorado

Postby Loobie » Tue Jun 16, 2009 12:38 pm

Hell yes this is useful information. Anytime you can go in knowing what to expect, in any situation, you are way ahead. Thank you! Since I'm staying at a buddies house, I'm staying out there for 6 days. I hope that will be enough!! I just sent Angela copies of all my MRI's. Let me tell you, Head, C spine, T spine, and L spine, done alll at once; with and without contrast, was just a pantload of fun! That was awful, but I now have an absolutely completely MRI baseline. 4+ hours in the tube 8O .

Thanks for compiling all of this Sharon. Much appreciated.
User avatar
Loobie
Family Elder
 
Posts: 2196
Joined: Mon Sep 11, 2006 2:00 pm
Location: Dayton, Ohio USA

Postby Sharon » Tue Jun 16, 2009 12:44 pm

Loobie - you are welcome!

4 hrs in the tube!! Do they play music? I get music here in Denver - do not expect the music at Stanford though. My grandson had an MRI at Children's Hospital here is Denver - he was able to watch Ice Age!! OH, to be a kid again :)

It is a good thing that you are not rushing back home.

Sharon

P.S. the book was fascinating - thanks for the suggestion
User avatar
Sharon
Family Elder
 
Posts: 1239
Joined: Sun Nov 07, 2004 3:00 pm
Location: Colorado

Postby LR1234 » Tue Jun 16, 2009 1:14 pm

4 Hours!!! Wow, After about half an hour I am ready to climb out of the machine!! I can manage an hour tops.
LR1234
Family Elder
 
Posts: 1505
Joined: Wed Feb 11, 2009 3:00 pm
Location: California

Next

Return to Chronic Cerebrospinal Venous Insufficiency (CCSVI)

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: No registered users


Contact us | Terms of Service