High Hopes on Pacific Coast

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

Postby questor » Sat Sep 05, 2009 9:15 am

catfreak wrote:I tried to open this and it says;

tinyproxy 1.6.0

The page you requested was unavailable.


Hi, Cat, Sorry the above link failed for you, don't know why. Here are the two paragraphs you missed reading (minus the hyperlinks in the original):

MSNews Post About CCSVI wrote:One of the newer, more interesting hypotheses about the pathology of MS is that the damage seen in MS stems from blockages (narrowing or twisting) in veins draining blood from the central nervous system. These blockages result in poor drainage and even reversal of blood flow direction, which could lead to inflammation, increased iron deposition, and eventually blood-brain barrier damage and lesions. A proponent of this hypothesis, Dr. Paolo Zamboni, has previously published results using Doppler sonogram technology showing that this reflux is prevalent in people with MS and specific to MS. Since then, he has taken the next step of performing surgical procedures in 75 people with RRMS, SPMS, or PPMS. These procedures included either balloon angioplasty (inflating up a tiny balloon inside the vein to open it back up) or stenting (inserting a tiny tube inside the vein to hold it open). In the year following the procedure, relapse rates and clinical test scores in the group overall were improved compared with those from before the procedure. Those subjects who had relapses following the procedure were also found to have had renarrowing of their treated veins. No follow-up MRIs were performed to evaluate whether this procedure reduced the formation of new or enlarging lesions, however.

These are preliminary results only so it's too soon to say exactly how CCVSI (chronic cerebrospinal venous insufficiency) is involved in MS and how/whether these types of treatments should be used in MS. An international meeting will be held in Italy next week to discuss this topic further, including a presentation by a doctor at Stanford (Michael Dake) who has recently treated some MS patients using these procedures. It is interesting to think that opening narrowed veins could lead to significant improvements for people with MS. It also raises the question of why cerebral veins are narrowed in people with MS in the first place and whether that could also be addressed.



BTW, I've been anxiously watching for and reading your posts about your Stanford experience. May your travels home be smooth and restful for you.

--Tracy
CCSVI Procedure 9/16/2009 at Stanford
Stent in left and right IJVs
SPMS
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Postby catfreak » Sat Sep 05, 2009 9:37 am

Thank you Tracy! We just missed the Caltrain to San Jose. Waitin on the next one. This may be too much for a small town girl!!
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 catfreak » Sat Sep 05, 2009 9:57 am

Tracy,

maybe you and Lew will get to meet when you come to Stanford. Ia looking forward to hearing from you then.

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 questor » Mon Sep 14, 2009 2:13 pm

Getting ready to head over to Palo Alto later tonight for tomorrow's tests. Testing begins Tuesday at 7am.

I've been busy the last few weeks trying to get everything in order (including advanced medical directive paperwork, etc).

I stopped taking low dose naltrexone on 8/31/2009 in preparation for the possible surgical procedure. I've used LDN since September of last year and it has been an eye-opener for me to experience life again without it. I'm one of the lucky ones who experience a boost in stamina, a reduction in physical fatigue, and a reduction in lower body weakness from LDN. But, as with all subjective measurements, it's nearly impossible to quantify this benefit, but there is definitely a benefit for me.

I've got a batch of gluten-free soda crackers to take over with me to have on hand in case the procedure is called for, to eat during recovery (I'm a firm believer in Embry's Best Bet Diet). I hope I'm not one of the first people with MS to be tested for CCSVI to be found not to have it.

My gut feel is that CCSVI will turn out to be a very important piece of the MS puzzle, but not necessarily the only piece. May my experience help add to the growing body of evidence.

Thanks again to all those involved in breaking ground earlier in this work, especially to Cheerleader for her remarkable contribution and energy for setting this in motion.

I'll update this thread later with test info, etc.

--Tracy
Last edited by questor on Mon Sep 14, 2009 5:35 pm, edited 1 time in total.
CCSVI Procedure 9/16/2009 at Stanford
Stent in left and right IJVs
SPMS
Copaxone and Ampyra user
Botox Bladder Injections
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Postby Jamie » Mon Sep 14, 2009 5:35 pm

Best wishes and happy trails!

Keep thinking when the going gets rough that its worth it!!
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Postby catfreak » Mon Sep 14, 2009 5:49 pm

Tracy,

Can't wait to hear what you find out for the test tomorrow.

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 Needled » Mon Sep 14, 2009 7:30 pm

Tracy, Best wishes for tomorrow's tests. I'll be thinking of you.
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Postby CRHInv » Tue Sep 15, 2009 8:26 am

I'm thinking about you. I can't wait to hear what they find.
Take care, Beth
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Postby questor » Tue Sep 15, 2009 2:40 pm

Looks like my MRV results fit the usual pattern seen at Stanford so far. Left and right IJVs both essentially fade away to nothing at about mid-ear. He did not see any problems with the azygous vein. There were some unexpected technical problems with the MRI, so Dr. Dake did not have a full set of images to look at, but what he had justifies the surgical procedure tomorrow. I'm set for 7am.

Onward...

--Tracy
CCSVI Procedure 9/16/2009 at Stanford
Stent in left and right IJVs
SPMS
Copaxone and Ampyra user
Botox Bladder Injections
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Postby CRHInv » Tue Sep 15, 2009 2:56 pm

Thank goodness. I am not glad you have a problem, but I am glad you have something that hopefully you can get some relief. I will be thinking of you and waiting to hear how it all goes. Hang in there and be well.
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Postby radeck » Tue Sep 15, 2009 3:21 pm

questor wrote:Looks like my MRV results fit the usual pattern seen at Stanford so far. Left and right IJVs both essentially fade away to nothing at about mid-ear.
--Tracy


In a way that must be a relief to know (i.e. one step forward at a time). Is the usual pattern that the IJVs are stenosed in a ~1 inch long stretch about mid-ear (i.e. C2-C3), and are fine above as well as below that?

I wonder what makes this area so unique...

Re-occurring swollen lymph nodes (therefore the association with Mono?) could be one possible culprit, but I don't know how likely it is for inflammation to "jump" over to the jugulars? This is all so interesting!

In any event, all the best for your procedure tomorrow, and hopefully some symptomatic relief!
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Postby Needled » Tue Sep 15, 2009 3:29 pm

Tracy, I'm glad Doc found something and he can fix it. Good luck with your procedure tomorrow, and I hope you have a speedy recovery.
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Postby CNClear » Tue Sep 15, 2009 3:55 pm

Everything is gonna turn out great...I just know it! We'll be thinking of you and keeping you in our prayers...

Lisa
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Postby cheerleader » Tue Sep 15, 2009 3:55 pm

Tracy-
Well, you have some answers. Hope the images you saw showed the blockage and the collateral veins that form around the jugulars. Lying down, the jugulars should be flowing rivers, opened tubes, and seeing how crimped they were answered many questions for Jeff. Rest well tonight, know that you are in good hands, and Dr. Dake knows so much more today than four months ago when he started this journey. The congenital component is beginning to look more compelling.
thoughts and prayers go with you-
cheer
Last edited by cheerleader on Tue Sep 15, 2009 4:15 pm, edited 1 time in total.
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby catfreak » Tue Sep 15, 2009 4:14 pm

Tracy,

Glad Dr D found something he could fix. Isn't he amazing. Just wait for tomorrow.

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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