Mel & Jamie's ongoing Stanford experience post!

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

Postby chrishasms » Thu Jul 09, 2009 11:07 am

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Last edited by chrishasms on Sat Dec 05, 2009 5:48 pm, edited 1 time in total.
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Postby Sharon » Thu Jul 09, 2009 11:25 am

Randi -

Because you will be flying home alone, I would like to make a couple of suggestions.

First, are you flying into San Jose or San Francisco? Jeff used a taxi service to get him from San Jose to Stanford and then back to the airport after the surgery. I believe Cheer said it cost him $50 each way. I would look into a shuttle service or taxi. There is no way that I could have taken care of getting a car back to the rental kiosk, schlep my luggage, and make it back to the airport. My daughter dropped me off at the Southwest curbsite check-in - the clerk called for the wheelchair --pretty simple. You are wheeled through the security line and taken to your gate.

Second, buy yourself one of those blow-up neck pillows that fit around your neck. If you have stents put in the jugs, this may help to alleviate some discomfort on your flight back home.

Remember that you will probably be on pain pills --

Oh, there is a shuttle bus service between most of the hotels and Stanford, and there is a shuttle on the Stanford campus so, I think you would be able to get around easily without a car. Actually, I am thinking about using a taxi from San Jose to Stanford on my return trip in August.

Sharon
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Postby Arcee » Thu Jul 09, 2009 12:01 pm

Thanks, Sharon. Friends are actually driving me to the airport, so I am set there. And I am comfortable doing a cab or the Marguerite in and around campus. The neck pillow is a great idea. I'll get one before I go just in case.
I'll be going through all your other posts about tips one more time before I head out - -much appreciated. Glad to hear you are doing well!
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Postby guitarguy » Thu Jul 09, 2009 12:10 pm

daniel wrote:
Jamie wrote:...snip...
Dr. Dake said something interesting that whilst he's not seen stenosis like this in non-ms patients he has seen congenitally malformed jugs on other people, he said one difference he's noticed is that people with MS tend to have low blood pressure. He speculated that low blood pressure combined with a congenital weakness could be causing the back flow and damage.
...snip...


It could be that people with MS tend to eat healthy and exercise more so they have lower blood pressure...?


I have very high blood pressure. I am thin and exercise all the time. I eat very well also.

My pressure started to go up after I was dx years ago. I lost my job ( because of MS), I had just got dx with MS and going through a relapse. it stayed borderline for years about 140/90 when I was stressed. After each baby it would go up about a week after I would deliver. After the last baby it jumped up to 191/110. 8O

But both my parents suffer from hypertension, as a matter of fact my mother died from a stroke and had numbers so highm they coulsnt control her presurre, my grandfather the same. My father had 4 open hear surgeries and hypertension. So in my case I think it's heriditary.

Currently my pressure is now 110/70 with medication.
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Postby Jamie » Thu Jul 09, 2009 12:17 pm

Maybe high contributes just as much as low?

Anyway, and I KNOW this is just a couple of days after but Mel woke up this morning feeling AWAKE rather than just 'up' - you know?

Not getting carried away and of course we will see what we want to see but I'll keep everyone posted.

(To me she seems very alert and chatty - she never returns peoples calls but has been on the phone a lot which she never is, usually too down/tired - again placebo maybe but its nice to see)
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Postby peekaboo » Thu Jul 09, 2009 12:48 pm

As our friend Wobbly says ITS THE REAL DEAL :D
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Postby Jamie » Thu Jul 09, 2009 1:09 pm

Arcee wrote:Ok, so here's hoping I don't break the hitting streak next week :wink: (I feel like I had to get that out here as it seems like the way to make sure it doesn't happen...)
Count me in the low blood pressure camp.
Jamie, do you mind saying a bit more about the trip home when you can? (Or pm if you would prefer.) If I have the surgery, I will be flying on my own, so the more prepared the better. (I think Sharon had mentioned the wheel chair service so it's on my list, but any other tips would be great.) My flight would be 3 days after surgery so that may help.
Will look forward to the blow-by-blow...
Thanks. And thanks so much for all your posting. Hope Mel is feeling better!
- Randi


I think three days after you should be okay, we flew sooner and she was very tender and couldn't move her neck much at all.

She's a bit more mobile today. She did have stents very high up which seem to be more painful when being installed but a quicker recovery than those lower down, so I guess it just depends.

I think just leave plenty of time to navigate the airport, we were late, get the chair service and try and get a window seat so you aren't 'bumped' by people, sudden jolts hurt.

Hope that helps!
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Postby peekaboo » Thu Jul 09, 2009 1:29 pm

jamie wrote:
I think just leave plenty of time to navigate the airport, we were late, get the chair service and try and get a window seat so you aren't 'bumped' by people, sudden jolts hurt.


Not only a wheel chair for navigating in the airport but also there is an isle chair that they can escort you thru the plane if walking is too difficult.
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Postby bestadmom » Thu Jul 09, 2009 1:51 pm

Back to the BP - mine is very low, too and I mentioned to my husband when I found this site and these threads that I bet it is related.
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Postby guitarguy » Thu Jul 09, 2009 3:41 pm

It could be or may not be. I know a lot of people with MS who also have hypertension. hypotension and hypertension can both be bad, depending how low your pressure actually is. Anything below 80/60 is way too low, otherwise you have normal BP, not low.
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Postby peekaboo » Thu Jul 09, 2009 4:27 pm

Jamie wrote -
Maybe high contributes just as much as low


For most of my life I have had low BP until a couple of years ago and now I have high and taking meds for it. I asked Dr D if my occlusions might have contributed to the High BP and at the time he did not think it effected BP at all. but he also said never say never.
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Postby Loobie » Fri Jul 10, 2009 3:58 am

I'm kind of glad I scheduled a whole week to be out there now. I was thinking I was going to get uber bored, but that sounds like it might be just what I need.
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Postby Arcee » Fri Jul 10, 2009 4:39 am

Thanks all for the suggestions.
Lew, here's to hoping that you and I both end up bored while recovering next week...
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Postby gibbledygook » Fri Jul 10, 2009 7:04 am

Loobie, I would have gladly slumped in a resting position for over a week and found the flight back to the UK pretty gruelling although I managed to sleep without spasms - yay! Good luck with everything guys and gals.
3 years antibiotics, 06/09 bilateral jug stents at C1, 05/11 ballooning of both jug valves, 07/12 stenting of renal vein, azygos & jug valve ballooning,
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Postby peekaboo » Fri Jul 10, 2009 7:10 am

Loobie and Arcee laying low? I see trouble coming :P
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