Long time lurker...my journey begins Tuesday
Re: Long time lurker...my journey begins Tuesday
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
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
Re: Long time lurker...my journey begins Tuesday
http://ccsvicare.com/contact-us/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?
here he is on TIMS http://www.thisisms.com/forum/drsclafani-u7116.html
contact him directly. he is in recovery mode right now and could probably use someone to talk to. LOL
my partner was positive for CCSVI in Germany where she was treated.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?
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.
... and prayers Tilt!tiltawhirl wrote:Thoughts?
Re: Long time lurker...my journey begins Tuesday
http://www.medpagetoday.com/clinical-co ... osis/31979
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.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.
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Re: Long time lurker...my journey begins Tuesday
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
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
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
Re: Long time lurker...my journey begins Tuesday
best of luck, may the flow be with you.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
Re: Long time lurker...my journey begins Tuesday
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!
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!
Re: Long time lurker...my journey begins Tuesday
Brooklyn has no waitCece wrote:Albany used to have a long waitlist but I think it's shorter now!
Re: Long time lurker...my journey begins Tuesday
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.
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
Ever see X-Men The Last Stand, David?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.
"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
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
Re: Long time lurker...my journey begins Tuesday
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
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
Kitty says, "Take that, you stenosis!"
Got MS?.....Get Liberated!
Got MS?.....Get Liberated!
Re: Long time lurker...my journey begins Tuesday
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.
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
Anyone care to comment on these results?
tiltCCSVI
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
...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
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
Re: Long time lurker...my journey begins Tuesday
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.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.
FA
Kitty says, "Take that, you stenosis!"
Got MS?.....Get Liberated!
Got MS?.....Get Liberated!
Re: Long time lurker...my journey begins Tuesday
A jugular is suppose to collapse to 10% of its size when you sit up, as the flow travels through other preferred routes.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).
Your right jugular gets bigger when you sit up. It's evidence that something's abnormal.
I think this means they directly identified an abnormal valve.Valvular B mode abnormality noted.
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.insufficiency was evident with reflux in the internal jugular vein at 0 and 90 degrees.
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
Ty Cece. Very interesting and helpful.Cece wrote:A jugular is suppose to collapse to 10% of its size when you sit up, as the flow travels through other preferred routes.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).
Your right jugular gets bigger when you sit up. It's evidence that something's abnormal.I think this means they directly identified an abnormal valve.Valvular B mode abnormality noted.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.insufficiency was evident with reflux in the internal jugular vein at 0 and 90 degrees.
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.
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
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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