Chronic Cerebrospinal Venous Insufficiency (CCSVI)-

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

Postby mrhodes40 » Thu Apr 30, 2009 7:45 pm

Hi Napay, thanks for the tips on the links.. :D ..all the links in the other thread found here are good http://www.thisisms.com/ftopicp-55803.html#55803

I fixed them at your urging here(it was pasted from 37) the pub med does not give those e pub ahead of print a number til they are out so the links went to pubmed and not the actual paper. We are way ahead of the curve you see :wink:

Schelling is a great paper but technical and a little outdated in some ways. He does however answer some questions like how does demyelination work then if this is the cause of MS? As I said essentially he explains with references that oligodendrocytes and myelin are fragile and mechanicl damage from reflux would hurt them preferentially.

Then of course the open BBB, which is open because of the reflux, allows the t cells and the macrophages in to the area and they eat up and target the damaged myelin---because it is damaged, not because they were programmed to do that.

This neatly explains why Prineas and Barnett saw apoptotic oligos with the microglia still ramified..................

In other words Prineas --who is a dystel prize winning MS researcher not some outlier--and Barnett saw that the oligodendrocytes were DEAD and the immune system was NOT there. The immune system had not done it.

To this day John Prineas, the main researcher from whose pathology lab we know most of what we know about MS regarding autoimmunity, believes ms is NOT autoimmune any more. His partner Barnett continues to write against the autoimmune model. The Zamboni model may explain why they saw what they saw.

Please see this and read it about Dr Prineas
http://www.msif.org/en/research/msif_re ... arcot.html

This is still not proven, but it is looking really good for the vein crowd.

I look forward to my testing on the 18th.......
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Postby chrishasms » Thu Apr 30, 2009 8:38 pm

Sharon-

Corboy humph. They left me in an exam room for 2 hours without anyone coming by. Then I went up to the nurses and asked when I would be seen and they said, "Who are you here for?" Everyone had left. I'll go to Dr. Kerr from now on.

I got no where with UH here either. They had me talk to Dr. Breeze which was worthless too.

I'm getting very frustrated by the whole thing.

So it's going to be covered by insurance that is good news. I too have some points and I love Southwest and have points with them too because I go to MD so often. They are a cheap ticket to San Fran.

So if he does the tests and you have it too, which of course you do, will he do the liberation immediately? How long is the total trip going to take?
I would guess a week tops eh?
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Postby Loobie » Fri May 01, 2009 5:24 am

cheerleader wrote:Wanted to give a breakdown of how Jeff's stenosis corresponds w/Zamboni's findings.

Jeff has "Pattern C" CCSVI. He has bilateral, atresia stenosis. This means both of his internal jugular veins are crimped closed. This pattern shows up mostly in RRMS patients, and is not common, because there is no involvement of the azygos vein. 86% of the MS patients Dr. Zamboni tested had some involvement of the azygos vein. Jeff doesn't.

I believe this is why Jeff's symptoms first appeared as brain issues: depression and fatigue, and why it took so long for him to be diagnosed. He does not have as many motor issues. He also does not have any spinal lesions, with the exception of one on the cervical spine. This one was enhanced at his diagnosis, and caused his numbness and tingling. That's what got him in the MRI tube and the MS diagnosis...but the brain issues were a problem for at least 15 years.

It will be interesting to see how the location of blockage in the veins relates to lesion location and disability.

AC


This will be interesting to compare me and Jeff. We sound like polar opposites in terms of initial presentation. All my lesions for the first five years were spinal to the point where they had me dx'd as Devic's for that whole time. Typical NMO though, bladder, bowels and eyes were my only symptoms for a long time. I eventually involved my head and that's when I started losing function in the areas of mentation and my gait and also the *&%#$#@@ dizziness (can you tell that's my fave?). So even though we have a whopping sample size of 1, I guess I'll be looking for azygous dysfunction probably more prominently than jugular. I suppose we'll wait and see.

LOOBIE DISCLAIMER: Since I have decided to use my Mom as my patient advocate since this is so tough to follow up on when working full time and trying to exercise and stuff, she has since joined TIMS and is loobiesmom. Some of her posts may come across as the equivalent of showing naked pictures of you in the tub when you were little to your new girlfriend :lol: . So even though I'm freshly 43, I know I'm still her boy, so give her a break and don't tell her all the nasty stuff I've said about her on here over the years (just kidding mom :wink: )

I'm fired up about this, and with Cheer's and my mothers help we are trying to get someone at Ohio State up for all of this, so if that doesn't work out, don't you guys go taking all the damn beds at Stanford! lol

Plus full on thanks to Cheer for sending me a cover letter for my initial email to send to the OSU docs. All I have to do is fill in a blank and send it off. She even found the department head there and his email. You're unbelievable in a fantastic sort of way!
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Postby Needled » Fri May 01, 2009 6:17 am

Cheer said:
We'll need to establish a vascular doctor resource, once we get enough interested. Look to your local universities, find out who are the vascular doctors who research venous insufficiency, cerebral thrombosis, jugular vein stenosis, and which schools have magnetic resonance venography technology.

Hi Cheer, East Coast checking in here. I want to try to this. We’re about an hour from Yale University in New Haven, Connecticut. I checked their website, and their Department of Diagnostic Radiology has a Magnetic Resonance Research Center. I checked their faculty list, and 5 names popped as doctors who seem to work in this field. That’s about as far as I want to go on my own without some help. I don’t want to mess up anything, and I don’t want to take up a lot of space here, so would it be OK if I sent you a PM with the doctors’ info and maybe you could help weed down the list and give me some direction on how to approach them? I also have to check the insurance angle, and I don’t want to blow that, either. But I’m ready, willing and able. I just need a bit of help from the master! :lol:
N
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Postby cheerleader » Fri May 01, 2009 7:37 am

Needled...
Believe it or not, my mother is currently working on getting Yale University on board with this. I'm a New Haven area gal (born and raised) and she has some connections there. Let me e-mail her and see how the good fight is going.

No need to PM...let me check in with her and see who her specific doc is, and what the status is with he/she reading the research.

As far as insurance....this MRV test is to rule out venous insufficiency as indicated by headache and edema. No MS mentioned.

best,
AC
Last edited by cheerleader on Fri May 01, 2009 7:41 am, 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 peekaboo » Fri May 01, 2009 7:37 am

chris wrote:

So if he does the tests and you have it too, which of course you do, will he do the liberation immediately? How long is the total trip going to take? I would guess a week tops eh?


With my appt. i will get 2 tests the first day ...the MRV and a colorized doppler...a consult w/ dr dake then if i have ccsvi, i will have out patient surgery the nextday and be ready to go
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Postby cheerleader » Fri May 01, 2009 8:07 am

Loobie wrote:LOOBIE DISCLAIMER: Since I have decided to use my Mom as my patient advocate since this is so tough to follow up on when working full time and trying to exercise and stuff, she has since joined TIMS and is loobiesmom. Some of her posts may come across as the equivalent of showing naked pictures of you in the tub when you were little to your new girlfriend :lol: . So even though I'm freshly 43, I know I'm still her boy, so give her a break and don't tell her all the nasty stuff I've said about her on here over the years (just kidding mom :wink: )
!


Welcome, Loobie's Mom! You should be proud of your son...but please, don't go searching his posts! Just some advice for your own good.
No, truly...Lew's been a great help and encourager. We all love him to pieces. Hope we can get some interest at OSU-
best,
AC
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby chrishasms » Fri May 01, 2009 8:17 am

So lets say Monday you have the tests, Tues the procedure, Wed you can go home?
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Postby peekaboo » Fri May 01, 2009 8:37 am

chris -

you betcha :D
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Postby chrishasms » Fri May 01, 2009 8:39 am

Wow, this like Revimmune seems to good to be true lol.
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Postby chrishasms » Fri May 01, 2009 9:03 am

Well I just left my message on an answering machine for an appointment. It was the number off of the website. We'll see if I get called back.
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Postby peekaboo » Fri May 01, 2009 10:06 am

Chris - did you use the clinic tele# or his personal # which is listed too. I by mistake called the clinic # go the machine so I hung up and looked at the website again to use he correct # and angela azure answered the phone. H.
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Postby chrishasms » Fri May 01, 2009 12:54 pm

Its the number right on his Stanford page. PM me the number if you would?
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Postby Sharon » Fri May 01, 2009 2:12 pm

Chris - call Angela at 650-724-0831. She is taking all the calls, setting the appointments, etc.

Like peekabo, I have tests on Monday, procedure on Tuesday - doc said I could go home Tuesday evening -

Sharon
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italy

Postby wobbly » Fri May 01, 2009 5:59 pm

i was having cocktails abt 2 hrs after ---he11 i m only going once/ STAY STRONG ALL :?: :?:
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