Long time lurker...my journey begins Tuesday

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

Re: Long time lurker...my journey begins Tuesday

Postby CureIous » Wed Apr 04, 2012 10:42 am

Look forward to your report. Here and across the internet, it is a macabre custom to congratulate on vein disease diagnosis... Beats looking at another MRI and hearing pro forma talk from a neuro any day of the week. Much success on your journey.....

Mark
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Re: Long time lurker...my journey begins Tuesday

Postby DougL » Wed Apr 04, 2012 10:44 am

tiltawhirl wrote:This hit me like a ton of bricks. Perhaps I should look at the pricing in Brooklynn....Any way to find that info online or do you need to call?


http://ccsvicare.com/contact-us/

here he is on TIMS drsclafani-u7116.html

contact him directly. he is in recovery mode right now and could probably use someone to talk to. LOL


tiltawhirl wrote:Had the dopplerUS today, but of course she wouldn't give me the results. 2 days and follow up with my family Doc.

One thing she said that struck me odd: "CCSVI is like pregnancy, you either have it or don't"

I was thinking but what if the detection process isn't a 100% test?


my partner was positive for CCSVI in Germany where she was treated.

tested negative in Toronto 6 months later (she had only one out of five to have CCSVI)

tested negative again in Brooklyn but Dr S said one out of five but one or two others which were maybe's

man oh man, did he ever find CCSVI when he went in and used IVUS.

$10,000 is a lot of money. it will take us years to pay it off. i would do it again in a heartbeat.

we made a vacation out of it. we spent the day with the Lady of Liberty, saw ground zero, and since my partner is a fashion guru, we shopped on 5th Avenue. $40 to park my stupid car.

sorry Albany, but you don't have a chance vs. NYC.

for the record, i have no finacial interest in Dr S or anyone. in fact, Dr S is contacting me and trying to figure out who my partner is so he can update his patient records.

i say this because i truely believe Dr S has given my partner the best chance of stopping MS progression.

tiltawhirl wrote:Thoughts?


... and prayers Tilt!
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Re: Long time lurker...my journey begins Tuesday

Postby Cece » Sat Apr 07, 2012 2:17 pm

http://www.medpagetoday.com/clinical-co ... osis/31979
The term coined, CCSVI, is a categorical term, black or white. CCSVI, yes or no. Now, nothing is black and white in life, and so it's not with the CCSVI. Because people who do not meet the criteria, Doppler criteria, two criteria or more for having CCSVI, they might be found as negative, not having CCSVI. Nevertheless, these people still can have significant venous anomalies in their veins and they are not completely normal. That's why I think the categorical approach is going with time to be abandoned. And a more quantitative approach is measuring the flow on Doppler, measuring the flow in velocity on MRV, trying to number -- trying to count the number of anomalies, trying to count the number of stenoses, trying to get the same information from MRV, and Doppler. [This approach] will be the one to provide us a good screening practice for determining if somebody should go on to more invasive diagnostic approaches.

This is from Dr. Zivadinov, and he's talking about categorical nature of MS. Like pregnant/not pregnant, it's CCSVI/not CCSVI. He thinks this categorical approach will in time be abandoned for a quantitative approach. Really interesting.
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Re: Long time lurker...my journey begins Tuesday

Postby tiltawhirl » Thu Apr 12, 2012 7:41 am

I am happy to report that I got my results back and they meet 3/5 criteria for CCSVI. I am calling Albany to schedule an appointment......NOW!

tilt
...and I for one, welcome our new Neurologist overlords!

My before and after CCSVI treatment video http://www.youtube.com/watch?v=RhosV4_DvWw
Visit my Lego Amusement Rides website http://www.brickshelf.com/cgi-bin/gallery.cgi?m=Bolliger
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Re: Long time lurker...my journey begins Tuesday

Postby DougL » Thu Apr 12, 2012 10:19 am

tiltawhirl wrote:I am happy to report that I got my results back and they meet 3/5 criteria for CCSVI. I am calling Albany to schedule an appointment......NOW!

tilt


best of luck, may the flow be with you.
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Re: Long time lurker...my journey begins Tuesday

Postby Cece » Thu Apr 12, 2012 11:07 am

Congrats on those results, tilt!
I remember being nervous getting tested, even though I knew by then that essentially everyone with MS meets the criteria for CCSVI. Sure enough, I did too. :)

Albany used to have a long waitlist but I think it's shorter now!
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Re: Long time lurker...my journey begins Tuesday

Postby DougL » Thu Apr 12, 2012 11:42 am

Cece wrote:Albany used to have a long waitlist but I think it's shorter now!

Brooklyn has no wait
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Re: Long time lurker...my journey begins Tuesday

Postby David1949 » Thu Apr 12, 2012 12:29 pm

The wait for Dr. Arslan in Chicago was not long either, about 1 month if I remember right. Not long ago the waiting list was 6 months at some places. So what's up with that?
Did everyone get treated? No way.
Did everyone who has insurance or could afford it get treated? Not likley either.
Did everyone who knows about CCSVI get treated?
Did people give up on it?
There seems to be an absence of pre and post ccsvi videos too.
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Re: Long time lurker...my journey begins Tuesday

Postby tiltawhirl » Thu Apr 12, 2012 1:49 pm

David1949 wrote:The wait for Dr. Arslan in Chicago was not long either, about 1 month if I remember right. Not long ago the waiting list was 6 months at some places. So what's up with that?
Did everyone get treated? No way.
Did everyone who has insurance or could afford it get treated? Not likley either.
Did everyone who knows about CCSVI get treated?
Did people give up on it?
There seems to be an absence of pre and post ccsvi videos too.


Ever see X-Men The Last Stand, David?
"In chess the pawns go first"
;)

I think the drop off is due to a few factors:
1. The initial group of sufferers to have the treatment and have the means to afford it have stepped up to the plate over the past few years
2. The wait and see folks are still on the edge of decision making regarding effacy vs potential drawbacks
3. Multiple studies that are now underway may be affecting peoples decision to go forward until the results are in

tilt
...and I for one, welcome our new Neurologist overlords!

My before and after CCSVI treatment video http://www.youtube.com/watch?v=RhosV4_DvWw
Visit my Lego Amusement Rides website http://www.brickshelf.com/cgi-bin/gallery.cgi?m=Bolliger
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Re: Long time lurker...my journey begins Tuesday

Postby Donnchadh » Thu Apr 12, 2012 2:10 pm

Medicare has determined that CCSVI venoplasty is "experimental" and will not pay for the procedure. This also effects many private medical insurance policies because they often often Medicare's lead on what's covered.

If this spreads throughout the medical insurance industry, then treatments will revert to being strictly cash only.
I doubt that many can afford that kind of expense.

Donnchadh
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Re: Long time lurker...my journey begins Tuesday

Postby Cece » Thu Apr 12, 2012 4:08 pm

I thought it was fairly basic demand and supply... At first there was pent-up demand and no openly available clinic doing the procedures.
Then one clinic became openly available (Dr. Siskin) followed by another (Dr. Hubbard's) and then many more (Synergy, VAC, American Access Care, HCMC, etc, etc.) With so many clinics doing the procedure, they've met the demand and are more-or-less in competition for patients.
It's a reason to be cautious of marketing claims.

Donnchadh, what you said makes me nervous: what if I need a third procedure at the wrong time? Up to now, my insurance company has covered 2 procedures and has not published anything like the BCBS statement declaring CCSVI experimental and not covered.
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Re: Long time lurker...my journey begins Tuesday

Postby tiltawhirl » Thu Apr 12, 2012 5:01 pm

Anyone care to comment on these results?

CCSVI
Indication CCSVI assessment.
History MS diagnosis: June 2010 Classification: SPMS
Findings RIGHT:
The cerebral venous outflow appears patent with no evidence of venous thrombosis. Venous
insufficiency was evident with reflux in the internal jugular vein at 0 and 90 degrees. The cross sectional area of the internal jugular vein at 90 degrees is larger than the cross sectonal area at 0 degrees resultng in a negative delta (positive result). Valvular B mode abnormality noted.
LEFT:
The cerebral venous outflow appears patent with no evidence of venous thrombosis. The cross sectonal area of the internal jugular vein at 90 degrees is larger than the cross sectional area at 0 degrees resultng in a negative delta (positive result). Valvular B mode abnormality noted.

Conclusion Venous insufficiency is noted in the right internal jugular vein at 0 and 90 degrees.
Positive values for cross sectonal area of the internal jugular veins.
Valvular B- mode abnormality noted.
Criteria met for CCSVI: 3/5 (Qualifying factor for CCSVI: 2/5)
The findings on this study support the diagnosis of CCSVI based on Dr. Zamboni's published literature.
Sandy McDonald RVT, RPVI, MD, FRCS(C), FACS A Lagace RVT,CRVS,BA,MA


tilt
...and I for one, welcome our new Neurologist overlords!

My before and after CCSVI treatment video http://www.youtube.com/watch?v=RhosV4_DvWw
Visit my Lego Amusement Rides website http://www.brickshelf.com/cgi-bin/gallery.cgi?m=Bolliger
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Re: Long time lurker...my journey begins Tuesday

Postby Donnchadh » Thu Apr 12, 2012 5:02 pm

Cece wrote:I thought it was fairly basic demand and supply... At first there was pent-up demand and no openly available clinic doing the procedures.
Then one clinic became openly available (Dr. Siskin) followed by another (Dr. Hubbard's) and then many more (Synergy, VAC, American Access Care, HCMC, etc, etc.) With so many clinics doing the procedure, they've met the demand and are more-or-less in competition for patients.
It's a reason to be cautious of marketing claims.

Donnchadh, what you said makes me nervous: what if I need a third procedure at the wrong time? Up to now, my insurance company has covered 2 procedures and has not published anything like the BCBS statement declaring CCSVI experimental and not covered.


My last procedure was done by Dr. Makris, who is part of American Access Care. Cathy, at their home office, has told me about Medicare's decision not to cover CCSVI. Further, Medicare has requested that the money previously paid for my procedure be refunded to them.

FA
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Re: Long time lurker...my journey begins Tuesday

Postby Cece » Thu Apr 12, 2012 5:10 pm

The cross sectional area of the internal jugular vein at 90 degrees is larger than the cross sectonal area at 0 degrees resultng in a negative delta (positive result).

A jugular is suppose to collapse to 10% of its size when you sit up, as the flow travels through other preferred routes.
Your right jugular gets bigger when you sit up. It's evidence that something's abnormal.
Valvular B mode abnormality noted.

I think this means they directly identified an abnormal valve.
insufficiency was evident with reflux in the internal jugular vein at 0 and 90 degrees.
There was reflux when you were lying down and there was reflux when you were sitting up. Reflux meaning the blood goes back up in order to get out another way.

Same on the left (valvular abnormality and CSA cross sectional area of jugular is bigger when sitting up than when lying down) except that no reflux is seen. So it's possible that your right jugular is worse than your left jugular but it's hard to say, because a doppler is not a perfect reflection of what's seen when a catheter venogram is done. Dr. Cumming has said the doppler corresponds to what he sees on venogram about 80% of the time.
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Re: Long time lurker...my journey begins Tuesday

Postby tiltawhirl » Thu Apr 12, 2012 5:57 pm

Cece wrote:
The cross sectional area of the internal jugular vein at 90 degrees is larger than the cross sectonal area at 0 degrees resultng in a negative delta (positive result).

A jugular is suppose to collapse to 10% of its size when you sit up, as the flow travels through other preferred routes.
Your right jugular gets bigger when you sit up. It's evidence that something's abnormal.
Valvular B mode abnormality noted.

I think this means they directly identified an abnormal valve.
insufficiency was evident with reflux in the internal jugular vein at 0 and 90 degrees.
There was reflux when you were lying down and there was reflux when you were sitting up. Reflux meaning the blood goes back up in order to get out another way.

Same on the left (valvular abnormality and CSA cross sectional area of jugular is bigger when sitting up than when lying down) except that no reflux is seen. So it's possible that your right jugular is worse than your left jugular but it's hard to say, because a doppler is not a perfect reflection of what's seen when a catheter venogram is done. Dr. Cumming has said the doppler corresponds to what he sees on venogram about 80% of the time.


Ty Cece. Very interesting and helpful.

tilt
...and I for one, welcome our new Neurologist overlords!

My before and after CCSVI treatment video http://www.youtube.com/watch?v=RhosV4_DvWw
Visit my Lego Amusement Rides website http://www.brickshelf.com/cgi-bin/gallery.cgi?m=Bolliger
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