Stanford "1 Years"

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

Stanford "1 Years"

Postby Rokkit » Fri Jul 16, 2010 8:04 am

So far I've only heard about Jeff and Mark having their one year appt at Stanford. I know Lew's is coming up. There has to be more than that by now. Does anyone have any info they can share?
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Postby cheerleader » Fri Jul 16, 2010 11:38 am

Lew's had his--coming home soon. So did Arcee. Sharon is first week of August. Marie (#2) had hers and posted in the regimens section. She and Jeff have both lost flow in their left sides, and had collaterals return, although right is doing well and taking all the venous return for both of them.

Sad that people aren't on the boards anymore....but hopefully they'll stop in for updates.
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby magoo » Fri Jul 16, 2010 11:51 am

Mine is in October!!!! I'll be meeting up with Beth and Rose :D
Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.
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Postby Rokkit » Fri Jul 16, 2010 12:26 pm

Mine's in October, too. Have you guys made appointments yet? I haven't. I didn't know how early I should.
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Postby magoo » Fri Jul 16, 2010 12:38 pm

Not yet, but we should all try to get together!!
Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.
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stanford

Postby blossom » Fri Jul 16, 2010 9:12 pm

cheerleader, do you know if the two people that lost flow had stents?
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Postby ErikaSlovakia » Sat Jul 17, 2010 2:15 am

Hi blossom!
I think I also maybe belong to this "group". I have one stent in my left jugular and my bloodflow is very low.
We still do not know why. I am in touch with Dr. Simka. I plan to have my next follow up in October/November.
My legs are quite OK but my main problem is still in my head - right now I have the feeling of swallen brain and headache - I have it always in hot weather. I still have strange pressure in my head and still problems with my vision (eye nerves). I am still dizzy...
One symptom is gone completely for sure: my neuropathic pain in my right arm.
I think I would be able to walk without cane in case these symptoms from my head go away.
Well, I must be patient, I know some doctors are working on this mystery as well.
These problems are not new. I have had it for more than 10 years.
Erika
Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse
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Re: stanford

Postby cheerleader » Sat Jul 17, 2010 8:42 am

blossom wrote:cheerleader, do you know if the two people that lost flow had stents?


Yes--both Jeff and Marie lost flow thru the stents. Dr. Dake is working on it. My husband Jeff had a congenitally malformed left jugular and very narrow left venous sinus above the jugular foramen (this is where his problem is, and it's too high for stenting.) But his stented right side is taking almost all the flow, and a small collateral is taking care of the left side. His gains from last year (loss of fatigue, loss of heat intolerance, no more spasms, no more urgent bladder) are still with him, but he had a return of headaches and tinnitus when the left side closed back up.

This is why I urge patients to stay local. This is a work in progress, and the doctors are learning from each other.
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby suzq77 » Sat Jul 17, 2010 9:06 am

Cheerleader,
My IR found that my right sigmoid sinus is almost completely occluded and that it would need to be stented. Is that the same area of Jeff's occlusion?
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Postby costumenastional » Sun Jul 18, 2010 9:34 am

I am really sorry to hear that flow can be diminished even when stents have been used. I wonder where does this leave the rest of us who only had balloon angioplasty...
This is very weird.
In Jeffs case, if narrow left venous sinus is the problem, how come there was flow after the stent was originaly inserted?
I really hope Dr Dake will be able to make things right.
Does anyone know if sinuses can be stented? From the looks of it, it doesnt seem to be a simple thing to do.
My bilateral tinnitus has not subsided post op, which kind of makes me thing that i may have problems up there also.

A big thank you to the people that keep us in the loop in here. I am constantly learning...
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Postby NotFound » Sun Jul 18, 2010 4:23 pm

suzq77 wrote:My IR found that my right sigmoid sinus is almost completely occluded

Sorry for off the topic question - by which test did your IR determined the sigmoid sinus occlusion?
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Postby suzq77 » Sun Jul 18, 2010 5:18 pm

I had an intracranial mrv.
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Postby Rose2 » Fri Jul 23, 2010 9:30 pm

Just made my yearly appt. for October. I hope to meet up with some other Yearlies. I am still taking just the baby aspirin.
I am continuing to do well. Still improving on a daily basis. Always have to look back and see what I didn't do last month.
I have 2 stents.
I did see Dr. Dake for a big hug last week when I was at Stanford for something else. He looks great and is still plugging away at all the red tape. Bless him and his committed staff.
I walked ALL OVER that campus, hospital, etc without a blink. And I can stand for A LONG LONG TIME!
Rose ;)
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Postby Loobie » Sat Jul 24, 2010 10:40 am

I had 0 problems in the work that they did. In other words, the stents are beautiful and all that. However, I've felt better in the last year and am HORRIBLY heat affected for the past few months as well as having balance, weakness and vision issues (those are tied to the heat big time). We saw 'something' that could be causing more flow issues, but the work they did is holding up really, really well. Dr. Dake is supposed to be showing my images to others before we proceed on what we saw since we just don't know if it's causing any problems. He actually said "if you hadn't told me you were having some issues, I'd have expected different since your images look so good". So we looked and found something that could possibly be causing issues. I really don't have any more than that as we just haven't drawn the perfect correlation, especially in progressive MS, that we should just fix anything in the venous system that's not 100% perfect.

So I'm waiting!
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Postby Lyon » Sat Jul 24, 2010 10:51 am

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Last edited by Lyon on Sun Nov 20, 2011 7:44 pm, edited 1 time in total.
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