cheer : low number of CCSVI diagnoses..... !!??

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

Postby weegie1 » Thu Jan 28, 2010 12:40 pm

I am a newbie so i apologise if this topic has been raised elsewhere.
My father who did not have ms died of a stroke, i had an aunt who did have ms who also died of a stroke.
They were brother and sister.
Since hearing about ccsvi i have wondered about the possible connection between conditions such as stroke and ms.
ccsvi has introduced the vascular link.
It seems that both stroke and ms are in my family history.
Does anyone else have such a connection in their background.
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Postby Zeureka » Thu Jan 28, 2010 12:41 pm

lionheart wrote:One thing is clear, there is a lot more to go!
I wish luck to all who have and will go for it!
I guess, I could visit the doctor in my country who's up to this matter and put all questions I have to him...I'll let you know about the answers and results.

Lionheart, you live in Bulgaria, just see this now.. Where a clinic just opened the procedure I've heard!
Go for it and see this clinic! You can always check the place out first, only get your diagnosis before doing an intervention + try to talk to the doctors. You have a lot to potentially win and little to loose on doing so...

Now that have diagnosis, I would personally go for it immediately (once I checked out a place and found the specialists) if would know that can get local medical follow-up in my country. I don't feel safe otherwise in case of potential problems. Unfortunately I'm still busy on sorting this one out in Italy...
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stroke and ms

Postby mtb213 » Thu Jan 28, 2010 1:30 pm

weegie1 wrote:I am a newbie so i apologise if this topic has been raised elsewhere.
My father who did not have ms died of a stroke, i had an aunt who did have ms who also died of a stroke.
They were brother and sister.
Since hearing about ccsvi i have wondered about the possible connection between conditions such as stroke and ms.
ccsvi has introduced the vascular link.
It seems that both stroke and ms are in my family history.
Does anyone else have such a connection in their background.


Father, Grandfather, Aunt, Uncle (father's side)--strokes
myself, brother, sister--ms

who knows?
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ccsvi and strokes

Postby weegie1 » Thu Jan 28, 2010 1:55 pm

thank you mtb213 for your reply
the reason i raised this is because today i read about ccsvi being a congential condition
it started me thinking
vascular disease are generally considered congenetial and there is also a genetic pre-disposition associated with ms
i wondered about a link between ms and general vascular conditions
thanks
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Postby Zeureka » Thu Jan 28, 2010 2:37 pm

Hi Weegie1! Welcome :)
Idea is not bad. Most commonly for cardio-vascular issues there is however a problem of the arteries. The standard colour-doppler-hospital protocols therefore mainly concentrate on checking arteries around the heart on chest/neck, and not the veins. This is our dilemma :oops:.
Dopplerexams and interventions on the leg veins by phlebologists are on the other hand more commonly performed.

So are artery and vein issues related? Both circulatory - so certainly there could be somehow a hereditary link for circulatory problem predispositions. However, in MS-related CCSVI never heard of artery problems, only vein problems. So maybe the genetic link is not so direct.

However, the same diet for cardiovascular diseases is said to be helpful for MS. But that diet is actually healthy for everyone! So we can't exclude anything...
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here's what False Creek offers, any comments or suggestions?

Postby Brightspot » Thu Jan 28, 2010 2:50 pm

I sent an email to False Creek asking what equipement and protocol they use, and what training their technicians have. This it the response I recieved. Have been reading all I can on this site. Should I be able to tell from this how the False Creek tests vary or conform with the Haake and Zamboni protocols??
Any suggestions on what I should ask them?
All input appreciated, thanks.
Note: I copied and pasted their reply, then edidted out some of the spaces, so as not to take up too much room. I left in their contact info. in case any other readers are interested.

If you decide to go ahead with the procedures, simply fax your requisition to 604-484-8141.
The protocols being used are:
2D Time of Flight]
MRA for Head and Neck
TRICKS (Flow Quantification) Head/Neck
SWAN (Susceptibility Weighted for Iron deposits in the brain)
Please don’t hesitate to contact me should you have any further questions.
Regards,
Tara Muncey
Advanced Diagnostics
@ False Creek Surgical Centre
6th Floor - 555 W. 8th Avenue
Vancouver, BC V5Z 1C6
Last edited by Brightspot on Thu Jan 28, 2010 2:55 pm, edited 1 time in total.
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Postby newfie-girl » Thu Jan 28, 2010 2:54 pm

Hi everyone, I am so happy to have found this site, it really has been informataive in everyway. I was diagnosed with rrms in 1998, and have progressed to spms, I had an appointment Monday past with my Neur and he informed me of more lesions on my spine, so how does the CCSVI theory apply to those msers who only have spine lesions, just a thought, can anyone enlighten me on t his?
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Re: here's what False Creek offers, any comments or suggesti

Postby cheerleader » Thu Jan 28, 2010 5:48 pm

Brightspot wrote:I sent an email to False Creek asking what equipement and protocol they use, and what training their technicians have. This it the response I recieved. Have been reading all I can on this site. Should I be able to tell from this how the False Creek tests vary or conform with the Haake and Zamboni protocols??
Any suggestions on what I should ask them?
All input appreciated, thanks.
Note: I copied and pasted their reply, then edidted out some of the spaces, so as not to take up too much room. I left in their contact info. in case any other readers are interested.

If you decide to go ahead with the procedures, simply fax your requisition to 604-484-8141.
The protocols being used are:
2D Time of Flight]
MRA for Head and Neck
TRICKS (Flow Quantification) Head/Neck
SWAN (Susceptibility Weighted for Iron deposits in the brain)
Please don’t hesitate to contact me should you have any further questions.
Regards,
Tara Muncey
Advanced Diagnostics
@ False Creek Surgical Centre
6th Floor - 555 W. 8th Avenue
Vancouver, BC V5Z 1C6


Thanks for printing this procedure- it explains alot. First of all, an MRA is a magnetic resonance angiogram of the ARTERIES. Dr. Haacke's protocol specifies MRV- magnetic resonance venography to follow the specific flow of blood in the VEINS from the brain back to the heart. MRA is not the same thing.

The SWAN test is not necessary to diagnose CCSVI. Yes, it's good to know how much iron is in the brain, but this has no bearing on a CCSVI diagnosis.

(TRICKS) Time resolved imaging of contrast kinetics is a MRI technique, which increases the temporal resolution of dynamic contrast enhanced magnetic resonance angiography (CE-MRA) sequences. Again, this involves MRA technology, which is blood going in, not out.

This is not even close to what is needed to diagnose CCSVI.
Please, bring the protocols to these facilities. If they do not understand what they are looking for, it is not worth the time, money or effort.
http://www.ms-mri.com/potential.php

Have them call Dr. Haacke, he can help them. Honestly, this is wrong, wrong, wrong....please, someone clear this up!!
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby ozarkcanoer » Thu Jan 28, 2010 6:00 pm

This was posted earlier on another thread :

"Out of 45 patients scanned to date:
6 patients have significant narrowing of the Internal Jugulars on MRV.
15 patients have other venous abnormalities that may or may not be pathologically significant.
So we are finding abnormalities.

Dr Mark Godley
Medical Director
urgentcarecentre.com"

If this guy is really the medical director then HE says that False Creek is doing MRVs not MRAs. Is the left hand not knowing what the right hand is doing ?????!!!

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Re: stroke and ms

Postby ElMarino » Thu Jan 28, 2010 8:58 pm

mtb213 wrote:
Father, Grandfather, Aunt, Uncle (father's side)--strokes
myself, brother, sister--ms

who knows?


We have to be really careful, knowing that strokes are relatively common and lots of people visit this board.. But I'm sure that you know that.
Apologies for my terrible username. I never thought I'd use the forum much when I registered..
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Postby Mechanicallyinclined » Thu Jan 28, 2010 9:19 pm

Ya know, It's good that False creek is doing some testing. I give them credit for that. They must surely have heard of the proper protocol by now and should warn people that their testing isn't up to par! Anyone that is interested in doing the proper testing with any sense would surely look into this properly, you would think.
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Re: here's what False Creek offers, any comments or suggesti

Postby Zeureka » Fri Jan 29, 2010 12:39 am

cheerleader wrote:Please, bring the protocols to these facilities. If they do not understand what they are looking for, it is not worth the time, money or effort.
http://www.ms-mri.com/potential.php

Cheer, thanks so much for the protocols link!
Some over here simply do not understand that it's just not as simple as going to a standard private lab + pay...

Steffi
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Postby CureIous » Fri Jan 29, 2010 1:03 am

ozarkcanoer wrote:berries,

No toes are hurt here !!!! Cheer is doing an excellent job. I just got a little stressed out when I saw several posts from people with negative CCSVI tests. I have to keep telling myself over and over again :Buffalo, Buffalo, Buffalo, LOLOLOL. And I guess we also need to comfort those who do report negative tests... it must be shattering after having so much hope.

ozarkcanoer


It's the elephant in the room we've all been ignoring for quite some time now, but with every passing negative, getting to the point that it needs to finally be addressed, having protocols and papers is not going to automatically guarantee that it is done correctly, going to an interventional radiologist is not going to guarantee that it is done correctly, or someone that has 125,000 scans under the belt, or a magic wand at their disposal. It takes a variety of factors coming together, proper equipment, proper training, loads of experience, not just walking into an office with someone else's protocol and saying, "have at it".

Just because some have had success following this route, doesn't mean everyone else will. There doesn't seem to be any wiggle room now, if the scans are negative, well it's the training, the wrong protocols, bad attitude or whatever, but the fact remains, there WERE people who walked away from Stanford and other places, with all the proper testing and 100% negative for CCSVI. I guarantee you Buffalo is not going to be putting out "100% positive numbers". That's a fairy tale land of make believe that does our fellow MSers a serious disservice.

So if someone has the time, the money or insurance coverage, and wants to have a stab at it, heck go for it if the curiousity is killing you or your wait time is being measured in incrementally smaller lots. Some are being forced by their circumstances to go for it.

It's not that some don't understand the "fine print", it's just that it's easy to miss amidst all the hoopla.

All that being said, the flip side is that yes, there are absolutely guaranteed to be some false negatives, and as long as people understand that IMPLICITY going in, and more specifically WHY those tests might come up negative, then there's less of a let down. Somehow the bad part never gets as much airtime as the good news. Maybe it should get it's own sticky. Then we'll see it's not just a false creek thing though they make a convenient deflection, it's worldwide.

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 nicko » Fri Jan 29, 2010 1:55 am

CureIous wrote:
Just because some have had success following this route, doesn't mean everyone else will. There doesn't seem to be any wiggle room now, if the scans are negative, well it's the training, the wrong protocols, bad attitude or whatever, but the fact remains, there WERE people who walked away from Stanford and other places, with all the proper testing and 100% negative for CCSVI. I guarantee you Buffalo is not going to be putting out "100% positive numbers". That's a fairy tale land of make believe that does our fellow MSers a serious disservice.



Its going to be interesting to see what the percent will be in our general MS population. Stanford was around 95% correct? so did that other 5% really have MS? there are people walking around with probable MS. Maybe a Neuro did a bad diagnosis? Alot of other conditions that can mimic MS early on. Do we know if Stanford was only accepting people with a proven MS diagnosis? Alot of factors to come into play here. But its going to be exciting to see what the real numbers are on a larger scale.
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Can MS be "proven"?

Postby fiddler » Fri Jan 29, 2010 4:43 am

Is there such a thing as "proven" MS? It seems to me that diagnoses of MS are usually made on the preponderance of evidence, not on the basis of any unequivocal test. Given what I have heard before and seen here from many postings, there may be a fair % of people diagnosed with MS who may, in fact, have another de-myelinizing disease, and perhaps other times when de-myelization is not the first or major way that what is defined as "MS" presents itself.
...Ted
Dx SPMS in 2004.  Liberated 29/04/2010.
My blog: www.my-darn-ms.blogspot.com
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