Mel & Jamie's ongoing Stanford experience post!

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

Postby peekaboo » Tue Jul 07, 2009 9:57 am

jamie - you prankster...I gave out a gasp thinking no way.....I am gullable at times :oops:

H
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Postby cheerleader » Tue Jul 07, 2009 10:02 am

Jamie wrote:Just met with Dr. Dake!

Mel has no blockage.









Just kidding.

Very occluded right jugular at C2. Undersized left jug not sure if congenital or a blockage.

Heading to pre-op now.

Proper update later.


Thanks for the spit take of coffee, Jamie...all over my shorts. Jeff sends his regards...gee, wonder why your poor sweetie was so tired!!! 8O
Functioning jugular return should help with that. hang in there, Jamie....it may be a long time. Dr. Dake is meticulous, and will take his time with your precious girl.
prayers and light sent from socal....
Joan
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby Jamie » Tue Jul 07, 2009 10:27 am

Thanks guys!!

No joking about the surgery, promise!

So Mel's in pre-op. I am so hopeful that she will get relief from the fatigue and heat intolerance.

I get to see her once more before the surgery I think.

This is a really, really positive thing to happen in her course of MS.

I hope it's a game changer.
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Postby mrhodes40 » Tue Jul 07, 2009 11:30 am

Oh my Jamie, me too!! Good luck to you both!
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
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Postby Jamie » Tue Jul 07, 2009 4:52 pm

I've been in the waiting room for ages! She was taken to pre op at 09:30 it's now nearly 5pm and she's still having the procedure.

I don't know if it's because they've had the MJ funeral on loop (!!) or what but I am really sad and anxious.

In my head I keep thinking okay we've tried hicy and now surgery, if this doesn't work wtf will??

I SHOULD be looking at the bright side and be happy but can't !

I'm sure this will pass when I see her finally.

This is real surgery though folks and should be considered in your decision.
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Postby mrhodes40 » Tue Jul 07, 2009 4:57 pm

Oh Jamie, it is hard waiting and the MJ on loop can't help! She'll be out soon I was in recovery until after 5 too...Bill was anxious! Soon you'll hear what was the thing they needed to do...
Love and prayers to you both!
marie
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
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Postby Jamie » Tue Jul 07, 2009 5:09 pm

Thanks Marie!

The screen is is still showing that she is in surgery still and not recovery.

Can't wait to see Dr Dake and hear of the success!
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Postby peekaboo » Tue Jul 07, 2009 5:17 pm

I didn't get to recovery until 6pm or later...the wait was waiting to get into the operating room...over booked? Once op was over with I went straight to recovery...then i didn't get an overnight bed until around 10-11pm. It is a long day...have faith in Dr D Your Mel is ok...Holly
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Postby mrhodes40 » Tue Jul 07, 2009 5:20 pm

I just talked to Island Girl she said Dr D just got out of surgery with todays lady----THAT'D BE MEL--- and she is going to get to see him and get her results.........

MAN are we a community or what??
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
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Postby Jamie » Tue Jul 07, 2009 5:28 pm

HahahAa

I'm sat here in the hospital and someone on TIMS knows before me that she's done!!!!!

Hope that IS Mel alhough it pretty much has to be!!

Thanks ladies!!
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Postby Jamie » Tue Jul 07, 2009 6:51 pm

Just seen dr dake!!!!!!

Surgery went 'very well' and he fitted one 12mm stent in right jug and one 7mm stent in left. No azygous occlusion. The stents were on the jawline.

He said that Mel was very like Jeff and should see similar quick improvements!

Her left jug is congenitally 'weird', twisted with poor flow and a very small sinus.

He fixed one stenosis there and would have liked to open up the sinus with a stent but considered it too risky.

Her right jug is Very dominant and normal flow has been restored with a large stent and all the collatoral veins have disappeared.

He hopes she wakes up with a headache as he considers that a sign that the changes are making a difference.

So, the op was successful and we now wait and see!!

One thing of note Mel was so anxious that the sedative did not work. Try and keep yourself calm beforehand. Mel needed lots of sedative and was in a lot of discomfort as a result, adrenaline banishes the drug.
Last edited by Jamie on Tue Jul 07, 2009 7:20 pm, edited 1 time in total.
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Postby cheerleader » Tue Jul 07, 2009 7:02 pm

Good job, Jamie and Mel! Better days ahead. Yup, that's sounds like Jeff's stenosis- and they both shared similar disabilities. Maybe they're related? German/English ancestors? Mel will have a headache and maybe nausea. But the clear headed feeling was the first thing positive Jeff noticed. As he quipped, "Now I'm awake enough to feel my head exploding!" But that pain won't last. Sorry she had the anxiety...that was no fun, I'm sure.

When she wakes, tell Mel we've been thinking about her, and glad she's thru the worst. Let her sleep, and you get some sleep tonight, too, Jamie! You must be exhausted.
best,
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby mrhodes40 » Tue Jul 07, 2009 7:09 pm

Oh Jamie great news! She is out and OK. AND they found something of real note! Wow! I am glad you had it fixed, that can't be good for "MS"...whatever THAT really is! :lol:

seriously it is real surgery. People need to think like that but this is a talented crew and they are fixing real problems for people. Way to go!
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
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Postby Jamie » Tue Jul 07, 2009 7:40 pm

Joan - maybe so!

Mel's Jewish of German/Russian extraction!
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Postby skydog » Tue Jul 07, 2009 8:03 pm

Great news !!! Three cheers for the D team getting the flow going. funny everyone wants the headache that I had for several years. Glad to have it pass. I guess that I am still the odd duck. Sleep tight Mel, Mark
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