MRI reports?????????

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MRI reports?????????

Postby scorpion » Mon Aug 31, 2009 8:40 am

Has anyone who received this procedure had any follow up MRI's since their operation????? It sounds like Zamboni has been studying CCSVI for quite awhile and I am sure there has to be SOME info. on whether any of the people have had changes on their MRI.
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Postby cheerleader » Mon Aug 31, 2009 8:58 am

The results from the Liberation procedure folks will be presented as Part 2 of the CCSVI paper at the conference in Sept. 8 in Bologna. I'll report back. The folks at Stanford have been having follow up MRIs at the 2 month check up. My husband's had no change for the better or worse. Not sure as to others' results. I'm also asking if there is follow up in spinal fluid results and oligoclonal bands, or any other means of detecting MS healing aside from symptom relief (not that relief isn't "proof" of healing, but I understand the need for scientific verification.) I'm on it.
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby scorpion » Mon Aug 31, 2009 9:25 am

Wow Cheer you sure are efficient. If you ever move to Raleigh, NC and need a job please look me up!!! Not only would your persistance benefit the agency I work for but we could also use some of your positive energy!!
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Postby euphoniaa » Mon Aug 31, 2009 9:48 am

cheerleader wrote: I'm also asking if there is follow up in spinal fluid results and oligoclonal bands, or any other means of detecting MS healing aside from symptom relief (not that relief isn't "proof" of healing, but I understand the need for scientific verification.) I'm on it.
cheer


Hi cheerleader,

I've been intrigued by the CCSVI research and check up on the latest scoop here now and then, but right now I only have a single comment/question. I know that lesions can come and go, but it's always been my understanding that O-bands in the spinal fluid are permanent, or so I've always read. Am I mistaken?

And I do wish all of you well in this approach!
Dx'd with MS & HNPP (hereditary peripheral neuropathy) 7/03 but must have had MS for 30 yrs before that. I've never taken meds for MS except 1 yr experiment on LDN. (I found diet, exercise, sleep, humor, music help me the most.)
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Postby catfreak » Mon Aug 31, 2009 10:28 am

Scorpion,

I've spent 4 week of the last 10 months in Raleigh, NC in training for my current job. Raleigh is a nice place.

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 mrhodes40 » Mon Aug 31, 2009 11:18 am

I believe there are going to be MRI results reported for liberation because I know:

that to screen for inclusion in the liberation group all patients had an MRI.(I asked Gici what the inclusion criteria were)

wobbly and the 3 other American's who were treated were included because Jacobs has a 3 tesla MRI and they can be followed in there.

This MRI data has not been reported on yet in any of the available papers, but it is out there.

My follow up was unchanged--go figure.

My MRI has been free of inflammation and unchanged for years. SPMS--will it ever change? MY guess is no, just like some dude with a stroke always has a stroke on MRI. It doesn't get smaller or go away with time, but that does not mean the person doesn't get more functional.
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
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Postby scorpion » Mon Aug 31, 2009 5:09 pm

People who have clinically improved with Revimmune have sometimes seen old lesions shrink or disappear. It will be interesting to see if we see the same results with vascular surgery.
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Postby CureOrBust » Mon Aug 31, 2009 8:55 pm

cheerleader wrote:My husband's had no change for the better or worse. Not sure as to others' results.
Cheer, did your husband have enhancing lesions before the op? after? I would guess no, but i can not specifically remember if he was classed as RR, SP or PP?
mrhodes40 wrote:My follow up was unchanged--go figure....SPMS--will it ever change? MY guess is no
I would guess yes! just that it will take time (I have a reason to believe his, just no time to search and post it, its on my list...), and may take the release of new medication/treatment.
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Postby cheerleader » Tue Sep 01, 2009 6:27 am

Hi Cure...
We don't know what Jeff would be classified as. He only had one major relapse before stents, when he was diagnosed in 2007. However, he lost his peripheral vision as a kid (when he was 12, the docs said it was drusen, we now think it was from increased optic disc pressure) and he had long term issues with depression and fatigue.

When he was diagnosed, he had 7 enhanced lesions, but has never had any more enhancement since then. Will some of his lesions heal? Who knows. I believe it's not about lesions and MRI, but the progressive neurodegeneration and axonal damage that never stops in MS. I believe the stenting will stop that damage caused by reflux and halt MS progression. But this has yet to be documented.
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dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby mrhodes40 » Tue Sep 01, 2009 12:01 pm

Thanks Cure for the encouragement but let me be clear: I am definitely functionally seeing changes, I just do not particularly expect to see changes on my personal MRI. Maybe I will update regimens. I honestly have less time for the internet than I used to :wink: .

I have had no inflammation or enhancing lesions for years. The theories now offered about why that is in SPMS do not take the possibility of CCSVI into account and I am thinking they will have to go back to the drawing board to figure out what is going on there if this becomes an accepted model for MS causation.

I will say that MS lesions become an actual scar that can be FELT in the brain on autopsy. It is a physically hard area around the vein. I suspect that what would happen in CCSVi after time is that the area is so scarred and hard it is no longer an area that can let inflammation in because there would be no delicate brain tissue left to be hurt by the CCSVI, no fragile nerves or oligo's dying and sending out cytokine signals for immune support and cleanup, only hard scar tissue, and this would result in a permanent scar on MRI that just never enhances any more. That's my personal idea about what that might be.

who have clinically improved with Revimmune have sometimes seen old lesions shrink or disappear.


I tried to go to JH for Revimmune when it was a hot topic here spring of '08. Dr Kerr, a lovely man I will add, said it would not help me after reviewing my material. In their first study they had half the participants do poorly after treatment and those people were all the ones with no active inflammation ahead of time, like me. They had decided then to take ONLY people with active inflammation.

The thing about that is that lesions naturally come and go in people with RRMS and active inflammation see
http://en.wikipedia.org/wiki/Multiple_sclerosis

go to the section on diagnosis and see monthly serial MRI's. This patient had several lesions appear and disappear over the course of a year.

Chris, who responded to revimmune had a lesion disappear after treatment---as well as a new one that appeared. He said they offered the explanation that the immune system "popped off" one last lesion as Chris described it. But what if CCSVI is the cause of MS? might it be that his immune system was suppressed enough that the one lesion healed, but as the supposed stenosis was still there, new damage occurred and his immune system simply responded by activating and cleaning up the damage?

So to get all basic physiology on you, inflammation is caused by an active immune system and enhancing lesions are a sign that the BBB is open and immunity is actively crossing into that area. When you do a treatment like Revimmune the body's ability to respond to damage like that is hampered.

And here is the million dollar point: A large part of the damage in MS, IS caused by the immune system going in to try to clean up the injured cells EVEN IF the cells were injured by CCSVI.

there doesn't HAVE to be autoimmunity for the immune system to still be a culprit in this story.

so revimmune can impact the lesions even if MS were caused by CCSVI.

Here's why I say that:
1. In legs, where people can have stasis ulcers, they know a sizeable portion of the damage is caused by the immune system trying to repair the injury. In SOME cases, Dr Simka told me when I asked, they do use anti inflammatory measures to reduce this, such as steroids. So only part of the damage is from the venous insufficiency, a portion of it is the immune system responding.

2. In stroke, a type of damage not the same as CCSVI but still with some similar factors (like ischemic damage), they can improve out comes by giving a immune suppressant temporarily in the acute phase because the immune system trying to clean up the stroke causes new damage of its own that worsens the damage to the brain tissue.

3. In spinal cord injury it is known that the SCI can be reduced by using steroids or something of that nature to stop the immune system from overdoing it and causing damage in the acute phase after the accident.

Therefore it is not surprising that people who have MS that still is inflammatory have lesions that come and go and it is not surprising that people who have had their immune system suppressed show less immune activity. Since we know that lesions have no correlation with disability our fascination with them may be misguided...or it may be that the best treatment will include an anti inflammatory element. No one can rule that out at this point.

All that having been said, if CCSVI is the cause of MS eventually it should be clear that at the minimum no new lesions appear if treatment of the stenosis is enough to stop MS.

And as another angle to this even treatments that do show some lesion reduction do not remove all lesions, therefore some lesions are new enough to be impacted others are apparently not.

To me it seems that the SPMS person is the likely person to have no lesions that CAN go away. It'd be nice if I was wrong, so if anyone has anything to offer that they think supports the idea that lesions should go away, I would be pleased to hear that.

I'm just trying to be realistic in my expectations
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 Sharon » Tue Sep 01, 2009 1:58 pm

Cure -
I am much like Marie...my MRI's have not changed since my diagnosis in 2003. I did not have inflammation or enhancing lesions on my first MRI, and on my last one taken at Stanford for follow-up it read the same.

Marie wrote
Since we know that lesions have no correlation with disability our fascination with them may be misguided

When I was first diagnosed I thought I was really lucky--I had a couple of small lesions in the brain, and one long one in the cervical spine...I did not think my MS would progress. Well, maybe the MS disease did not progress, but the disability did.

To me it seems that the SPMS person is the likely person to have no lesions that CAN go away. It'd be nice if I was wrong, so if anyone has anything to offer that they think supports the idea that lesions should go away, I would be pleased to hear that.

Gee, Marie I think we are going to look long and hard for someone. The scientists, the docs, the researchers don't even have a clue and they have been looking at this for a long time. :cry:
I will say that according to the OCT ocular test that I have had, my lesions in the brain should not present with a black hole,(otherwise my brain would be shrinking and it hasn't) so maybe, just maybe I might have a chance they could heal.

Sharon
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Postby mrhodes40 » Tue Sep 01, 2009 2:14 pm

diagnosed I thought I was really lucky--I had a couple of small lesions in the brain, and one long one in the cervical spine
Wow Sharon me too. 8O I only have 4 lesions and the biggest is about 4cm. I too thought I was lucky--my neuro actually said my MRI looks better than some newly diagnosed people's do!!

Over the years I have become a little "deaf" when I hear about lesion data.... mentally I roll my eyes and shake it off. :roll:

BTW I do not have any atrophy noted either I asked and he said nothing here at all to worry about, I do have a black hole though. Did you know they can actually go away according to the neuro?
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 Sharon » Tue Sep 01, 2009 2:20 pm

I do have a black hole though. Did you know they can actually go away according to the neuro?
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No, I didn't --I was told the black hole is axonal damage with surrounding tissue die off. Interesting. :?

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