Long time lurker...my journey begins Tuesday

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

Long time lurker...my journey begins Tuesday

Postby tiltawhirl » Sat Mar 31, 2012 11:31 am

Hello all,

As a long time lurker here I feel like I already know many of you from your posts. After sifting through ALL of the information, both the good and bad, the miraculous and horror stories I have decided to move forward with the procedure. I am scheduled up in Barrie Ontario at Barrie Vascular as a starting point. Being in Canada the choices are limited for a first step using the 'gold standard' for diagnoses. Dr Sandy McDonald is familliar with the Zamboni protocols and hopefully we have a positive result. If I do get a positive result(hell even if I get a false neg) I plan on going to Albany for the treatment. This is all out of pocket so the costs are something to consider. Given the 1 in 3 immediate results I have to give this a shot. I was on Avonex which just made me ill and I stopped taking the Neuro's drugs. Dx SPMS in 2010, but suffering for close to a decade. Severe depression from a guy that is the epitomy of optimist, I walk with a cane as my left leg is uncooperative. Previous bowel and bladder issues, severe fatigue. New lesions on my latest MRI.


Time to give this a go. I shall post my progress for those interested. I have culled a list of questions to ask from the wealth of info both here and on the web. Is there anything else I should possibly consider that may be overlooked? My appoinment is Tuesday.

Good luck to all those fighting this bastard. I'll post when I get out of the ring. ;)

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 Cece » Sat Mar 31, 2012 12:23 pm

Good luck to you, tiltawhirl! I think you're making a good choice to get treated but then I made the same choice too.

If I may ask, if you are planning to go to Albany regardless of the doppler result, then why get the doppler? It is only the 'gold standard' of noninvasive diagnostic methods. The true gold standard is the ivus+venogram combination but that can only happen after your femoral vein has been punched and a catheter inserted. (Worse part of the procedure, right there! It is done before any pain medication is delivered.)
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Re: Long time lurker...my journey begins Tuesday

Postby PointsNorth » Sat Mar 31, 2012 1:21 pm

Best of Luck, tilt. Let us know how it goes!

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

Postby tiltawhirl » Sat Mar 31, 2012 3:20 pm

Cece wrote:Good luck to you, tiltawhirl! I think you're making a good choice to get treated but then I made the same choice too.

If I may ask, if you are planning to go to Albany regardless of the doppler result, then why get the doppler? It is only the 'gold standard' of noninvasive diagnostic methods. The true gold standard is the ivus+venogram combination but that can only happen after your femoral vein has been punched and a catheter inserted. (Worse part of the procedure, right there! It is done before any pain medication is delivered.)


Ty Cece. :)

It's a bit like putting your foot in the water to test it. I will get the test in Barrie for a very low cost, and very little travel time. If there is evidence for CCSVI then I will head to Albany with far more confidence that I am doing the right thing. I know that sounds like a lot of malarky, but that's what feels like the right thing to do.

So if positive in Barrie, I will head to Albany to confirm the positive and have the angio. If it's neg in Barrie, I will think some more then probably go to Albany to confirm the negative and or do the angio if they find anything different than Barrie.

It all looks logical in my mind anyways. lol.

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 Cece » Sat Mar 31, 2012 5:48 pm

Albany doesn't do doppler ultrasounds anymore, they'll go straight to the procedure when you go there.

I understand about getting tested first! I had a doppler ultrasound done in November of 2010, then an MRV, then finally got treated in February 2011.

I remember with the MRV, how amazing it was to see those stenoses in each jugular, and not just have the theory and the reassurement that everyone who has MS has CCSVI but to be able to see for myself that yes, I had it too, and yes I could get it treated! Good times.
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Re: Long time lurker...my journey begins Tuesday

Postby blossom » Sun Apr 01, 2012 9:38 am

the best to you!
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Re: Long time lurker...my journey begins Tuesday

Postby hargarah » Mon Apr 02, 2012 2:51 pm

Please remember that the ultrasound is just a starting point, and as I learned at Synergy - there are a lot of False Positives. Our veins are 'like a box of chocolates'...you never know what you are going to find..until you actually go inside and look.

Best of Luck!!
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Re: Long time lurker...my journey begins Tuesday

Postby DIR » Mon Apr 02, 2012 5:11 pm

Wish you the best of luck!!
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I suggest...................

Postby MarkW » Tue Apr 03, 2012 5:30 am

Hello Tiltawhirl,
Best wishes for the procedure. I suggest you ask Albany to use IVUS and venography; enter via the saphanous vein; investgate veins in your trunk as well as head/neck; do not tear the vein annulus when treating.
Let us know what they find and do.
MarkW
Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 11 years of study around MS.
Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html
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Re: Long time lurker...my journey begins Tuesday

Postby Cece » Tue Apr 03, 2012 6:51 am

I remember saying back in 2010 that when you choose your provider, you choose your treatment. I would suggest that he have no expectations that the doctors at Albany would change their techniques based on patient request! You have to trust your doctor once you get that far, which is why the option to choose is early on, when choosing a doctor.

At Albany, they do not use ivus, they do not enter through the saphenous vein, they do not investigate the trunk veins other than the azygous, and they do not tear the vein annulus when treating.
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Re: Long time lurker...my journey begins Tuesday

Postby MarkW » Tue Apr 03, 2012 12:22 pm

Hello Cece,
Thanks for the posting on Albany. I have tried to guide pwMS to the clinics who use the gold standard diagnosis. I did not realise that Albany was so far behind leading practice. Do people like you and me need to highlight leading practice more than we have done ??? I cannot advise anyone to pay for a diagnosis and miss out the renal and iliac veins.
MarkW
Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 11 years of study around MS.
Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html
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Re: Long time lurker...my journey begins Tuesday

Postby tiltawhirl » Tue Apr 03, 2012 2:33 pm

Cece wrote:I remember saying back in 2010 that when you choose your provider, you choose your treatment. I would suggest that he have no expectations that the doctors at Albany would change their techniques based on patient request! You have to trust your doctor once you get that far, which is why the option to choose is early on, when choosing a doctor.

At Albany, they do not use ivus, they do not enter through the saphenous vein, they do not investigate the trunk veins other than the azygous, and they do not tear the vein annulus when treating.


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?

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?


Thoughts?

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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Brooklyn cost 10,000 usd in 2011

Postby MarkW » Wed Apr 04, 2012 2:35 am

Hello Tilt,
I travelled from Oxford England to Brooklyn for my second procedure and it cost 10,000 usd in June 2011, so I am biased. The issue I see it that flying afterwards (I stayed on the ground in USA for 20 days) and getting follow up is best done with a local clinic. On the plus side going to Brooklyn means you get treated by the leading global practitioner (expert plumber he says) as soon as he is well and operating again.
I do not know where you live but check out the 'gold standard diagnosis' thread for the closest clinic to you.
Personally I did not get a Doppler scan prior to my first catheter venography but that was back in June 2010.
Cece also went to Brooklyn for her second procedure.
Trust you find the local phone numbers for American Access Care, Brooklyn on the web.
Kind regards,
MarkW
Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 11 years of study around MS.
Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html
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Re: Long time lurker...my journey begins Tuesday

Postby Cece » Wed Apr 04, 2012 7:42 am

I went with Dr. Sclafani for my first and second procedure, Mark. I chose him for the same reasons that I recommend him to others: use of IVUS means a more thorough & safer procedure, extraordinary accessibility to his patients before and after the procedure through email and his thread here at TiMS, and his techniques are well thought out.

Albany has a great deal of experience. Dr. Siskin has said he is waiting for research to be published by the doctors who are saying that the renal stenosis is important in CCSVI. This is not unreasonable. He is doing the procedure as Dr. Zamboni's team did it according to Dr. Zamboni's published research. Other doctors are going further, looking at the ascending lumbars, looking at the effect of renal stenosis on the flow through the azygous (which was also seen clinically by Dr. Arata when he found a patient whose renal vein flow was blocked and all the flow was diverted into the cerebrospinal drainage, which is not good), looking at the dural sinuses. Dr. Sclafani posted the other day about treating the vertebral vein in a patient whose jugular had occluded. A doctor is on the forefront if he is treating CCSVI at all, and Dr. Sclafani is on the forefront of the forefront, if that makes sense.

I can see why the tech would say CCSVI is like pregnancy, you either have it or you don't. I'd assume she was referring to the doppler testing. If you have two criteria met, you have CCSVI. If you have one criteria, you do not. This is based on Dr. Zamboni's finding that among healthy controls, there would sometimes be one of the criteria, but never two. It would be good to have more research backing this up. I would disagree with the statement that CCSVI is either something you have or something you don't, because like many things it would seem to be on a continuum, with some people having no outflow blockages and some people having a small degree of outflow blockages and some people having higher-grade blockages and some people having near-total blockages in the jugulars. We don't know where on the continuum CCSVI causes trouble for people, or if there is a susceptibility among some of us that would cause us to be more affected by our CCSVI, or all the hemodynamics that are involved.

Let us know what you find out! I was 3 criteria out of 5 for CCSVI, and venogram plus ivus showed 99% blockage in one jugular and 80% in the other. What sticks with me is that, if I hadn't been rooting around on the internet and learned about CCSVI, I would have had no reason to suspect that my jugulars were blocked.
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Re: Long time lurker...my journey begins Tuesday

Postby tiltawhirl » Wed Apr 04, 2012 8:57 am

MarkW wrote:Hello Tilt,
I travelled from Oxford England to Brooklyn for my second procedure and it cost 10,000 usd in June 2011, so I am biased. The issue I see it that flying afterwards (I stayed on the ground in USA for 20 days) and getting follow up is best done with a local clinic. On the plus side going to Brooklyn means you get treated by the leading global practitioner (expert plumber he says) as soon as he is well and operating again.
I do not know where you live but check out the 'gold standard diagnosis' thread for the closest clinic to you.
Personally I did not get a Doppler scan prior to my first catheter venography but that was back in June 2010.
Cece also went to Brooklyn for her second procedure.
Trust you find the local phone numbers for American Access Care, Brooklyn on the web.
Kind regards,
MarkW


Cece wrote:I went with Dr. Sclafani for my first and second procedure, Mark. I chose him for the same reasons that I recommend him to others: use of IVUS means a more thorough & safer procedure, extraordinary accessibility to his patients before and after the procedure through email and his thread here at TiMS, and his techniques are well thought out.

Albany has a great deal of experience. Dr. Siskin has said he is waiting for research to be published by the doctors who are saying that the renal stenosis is important in CCSVI. This is not unreasonable. He is doing the procedure as Dr. Zamboni's team did it according to Dr. Zamboni's published research. Other doctors are going further, looking at the ascending lumbars, looking at the effect of renal stenosis on the flow through the azygous (which was also seen clinically by Dr. Arata when he found a patient whose renal vein flow was blocked and all the flow was diverted into the cerebrospinal drainage, which is not good), looking at the dural sinuses. Dr. Sclafani posted the other day about treating the vertebral vein in a patient whose jugular had occluded. A doctor is on the forefront if he is treating CCSVI at all, and Dr. Sclafani is on the forefront of the forefront, if that makes sense.

I can see why the tech would say CCSVI is like pregnancy, you either have it or you don't. I'd assume she was referring to the doppler testing. If you have two criteria met, you have CCSVI. If you have one criteria, you do not. This is based on Dr. Zamboni's finding that among healthy controls, there would sometimes be one of the criteria, but never two. It would be good to have more research backing this up. I would disagree with the statement that CCSVI is either something you have or something you don't, because like many things it would seem to be on a continuum, with some people having no outflow blockages and some people having a small degree of outflow blockages and some people having higher-grade blockages and some people having near-total blockages in the jugulars. We don't know where on the continuum CCSVI causes trouble for people, or if there is a susceptibility among some of us that would cause us to be more affected by our CCSVI, or all the hemodynamics that are involved.

Let us know what you find out! I was 3 criteria out of 5 for CCSVI, and venogram plus ivus showed 99% blockage in one jugular and 80% in the other. What sticks with me is that, if I hadn't been rooting around on the internet and learned about CCSVI, I would have had no reason to suspect that my jugulars were blocked.


Ty very much the both of you for the valuable information. I shall let you know, hopefully tomorrow, the results.
Is it weird to actually be rooting for a CCSVI confirmation? lol.

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
tiltawhirl
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