Rokkit goes to Stanford

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

Rokkit goes to Stanford

Postby Rokkit » Thu Sep 17, 2009 4:59 pm

I've had the appt for a while, but I just bought plane tickets today, so I figured it was time to come out of the closet. Oct 5 is my date.

My case is a little unique in that I haven't been diagnosed with MS. I don't have MS lesions on my MRI. I do have oligoclonal bands in my CSF. I have a symptom history (including neurogenic bladder) consistent with PPMS. Dr Dake agreed to evaluate me just to see what's there.

I figure why wait years for a definite opinion on whether or not I have MS? I either have CCSVI or I don't, which can be determined now. If it turns out I have it, then I have a BIG decision to make. Do I go forward with a treatment that hasn't been proven to be effective in a disease I might not even have? It's a weird conundrum.

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Re: Rokkit goes to Stanford

Postby Loobie » Thu Sep 17, 2009 5:36 pm

Rokkit wrote:I either have CCSVI or I don't, which can be determined now. If it turns out I have it, then I have a BIG decision to make. Do I go forward with a treatment that hasn't been proven to be effective in a disease I might not even have? It's a weird conundrum.

Rokkit


You got it. It is a weird conundrum. But if you do have MS, the same conundrum presents itself because the efficacy of what you can take as a prescription, to me, hasn't proven anything with any greater efficacy than this model, so if you have stenosis, just get 'er fixed!
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Postby IHateMS » Thu Sep 17, 2009 5:39 pm

best wishes in a resolution....... :)
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Postby CRHInv » Thu Sep 17, 2009 7:00 pm

Seems that if the blood isn't moving correctly it surely should be fixed.
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Postby Rokkit » Tue Oct 06, 2009 9:09 am

Both my jugs are flattened at ear level. Lots of collaterals. Getting stents in about an hour.
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Postby CureIous » Tue Oct 06, 2009 9:17 am

Rokkit wrote:Both my jugs are flattened at ear level. Lots of collaterals. Getting stents in about an hour.


Imagine that!!!
Wow that was fast. Keep us posted!


Mark.
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Postby cheerleader » Tue Oct 06, 2009 9:20 am

Rokkit wrote:Both my jugs are flattened at ear level. Lots of collaterals. Getting stents in about an hour.


Praying for you rokkit....
Keep us posted and here's to f-l-o-w
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby radeck » Tue Oct 06, 2009 9:34 am

Did Dr. Dake understand what caused/causes the problems in both your jugulars?

I hope everything will go well and am looking forward to your update.
Last edited by radeck on Sun Jan 24, 2010 3:16 pm, edited 1 time in total.
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Postby catfreak » Tue Oct 06, 2009 10:23 am

Wow Rokkit!!!

We are all praying for you! Please update when you can!

Cat
Holly - Shine On You Crazy Diamond - Pink Floyd

9/3/09 Stanford - Dr Dake - Stent in R-J to unblock Arachnoid Cyst in Sigmoid Sinus. Stent in narrowed L-J. Balloon in narrowing where R & L Jugulars meet.
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Postby Arcee » Tue Oct 06, 2009 10:37 am

Rokkit, as many of us discovered, the worst of it is over for you. Now you know, and it is clear, and something is being done. It's really an amazing thing. You are in good hands, and you are well prepared. Here's hoping it all goes smoothly for you, and looking forward to hearing from you.
diagnosed RR in spring '04
1 stent placed in left jugular vein 7/15/09
on and off Copaxone
allergric to interferons and Tysabri
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Postby javaneen » Tue Oct 06, 2009 12:29 pm

Sending my prayers Rokkit. Good luck with everything!
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Postby Shannon » Tue Oct 06, 2009 12:52 pm

Best wishes Rokkit!! This is amazing and exciting for you. I can't wait to get an update. Glad you made your decision and are doing what is right for you.
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Postby mrhodes40 » Tue Oct 06, 2009 5:28 pm

Wow, what an incredible thing! Did you have an MRI and do you have any lesions at this time?

Wouldn't it be cool if your OCB went away? Will you be retested??

very interesting
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 bestadmom » Tue Oct 06, 2009 6:29 pm

Here's to a simple procedure, a quick recovery and the elimination of your symptoms. My fingers are crossed for you.

Michelle
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Postby Jamie » Tue Oct 06, 2009 7:02 pm

Good luck Rokkit!

It's not going to be pleasant but hopefully you'll get some good relief.
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