Are some of us being under-treated?

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

Are some of us being under-treated?

Postby Interrupted » Sun Nov 21, 2010 12:32 pm

I'll propose this question briefly as it's a subject I was having a long discussion with someone else from this board about, on the phone the other day...

Are some of us (especially perhaps those us opting for pre-allocated surgical packages at home or abroad) paying the price of being 'under-treated' due to the numbers some clinics are cramming in by trying to either keep up with demand or -as some might suggest- making money?
And let's not forget, thus wasting our money and further risking our health on increasing the risk of having to have multiple surgeries as a result.

One would have thought that at such an early and unproven stage, scans and surgeries that last up to 2 or 3 hours a time, as some experience, would be pretty normal. Not 10 min' to half hour allocated slots for all?

I don't really want to discuss aftercare at this point, as that's a whole other big kettle o' fish and controversy. This is more regarding time spent diagnosing and initially treating, getting the basis right. Bearing in mind pretty much every procedure failure on here is initially blamed on something being missed, please share your opinions as I really would like to know if there is a wider feeling about this topic :idea:




[Note: I am not finger pointing at any one clinic because there are several that people may feel potentially fall into this category where quantity seems to prioritise over quality. I am also not forgetting how we make the choice as to where we undergo surgery and with who.]
28/07/10, 04/10/10, 16/11/10 - Dopplers x3 Ireland, Poland, Scotland.
12/10/10 - 1st procedure, Poland. Symptoms worsened. No improvement.
Verdict: I urge caution + am taking a back seat watching research ATM.
13/02/12 - Started Wheldon ABX protocol.
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Postby L » Sun Nov 21, 2010 12:49 pm

My concern when choosing a European doctor was that the azygous vein was being undertreated, judging by patient testimonials on German and Dutch web sites.

Dr Sinan in Egypt reports that 95% of patients have a problem here, usually discovered when using the balloon as a diagnostic too.

So I'm off to Alexandria in exactly one week (these time next week I'll be sitting on board an aeroplane).
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Postby Cece » Sun Nov 21, 2010 1:22 pm

This is a big concern of mine: who is being under-treated, who is being over-treated, how do we tell the difference. With the anticoagulation, we have to find the just-right: maybe Plavix is too weak, Coumadin is perhaps too strong unless it turns out to be just-right, who knows. (Although IMO aligning ourselves with either Dr. Sclafani or Dr. Sinan's choices is smart: on the matter of anticoagulants, it's Arixtra for Dr. Sclafani, Clexane plus Plavix plus aspirin for Dr. Sinan.)

Is the use of stents over-treating, causing lifelong problems? Are 10-14 mm balloons under-treating, failing to dilate the valve enough to make lasting change?

LR1234 tells us that the common practice in the UK, if the jugular clots, is to let it be! That they only treated her because it had clotted so extensively. If the standard practice is to let it be, that sounds like under-treatment to me. CCSVI is changing things.
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Postby bluesky63 » Sun Nov 21, 2010 2:00 pm

I don't know how anyone can make any informed "choices" right now. I don't know how anyone can even sort out any reasonable comparisons. With so many possible variables, it would be incredibly challenging to make comparisons. Each person is a unique case study. Everyone who is having treatment right now outside a recognized trial is being part of a huge uncontrolled discovery process.

I don't expect this to happen, but . . . what if we learn that all the people who went to a certain center have a higher risk of certain types of cancer from being exposed to the radiation in the procedure because of the equipment they used? What if it turned out that having procedures at a certain elevation above sea level was critical to keeping veins open and that's why some locations had a better success rate? Etc.

Just thinking online. Or not. :-) Under-treating and over-treating will become more evident over time, along with other issues. We hope. :-)
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Postby EJC » Sun Nov 21, 2010 3:46 pm

Having discovered CCSVI earlier this year and reading everything I could possibly find on the subject, my wife and I made the decision that we would wait until treatment was available in the UK.

There were a number of factors that lead us to arrive at this decision which we won't go over now.

We were lucky enough to get on the EHC waiting list, were scanned in July and expect an imminent appointment for "liberation" (early next year).

Whilst it's frustrating that we're waiting, it's actually kind of encouraging that the EHC made sure everything was right before procedures started, I get he feeling they want to do this properly. If this was a money making exercise for them the production line would have been well under way by now.

Right now, any MS suffers that choose to take this route accept that they are "Ginuea Pigs" for a noew groundbreaking procedure. Unfortunately human nature being what it is someone somewhere is going to try and take advantage of this.

MS is a horrible condition, CCSVI is the light at the end of what was once a pitch black tunnel for many sufferers. What is important is being level headed and objective about where you go and what you choose in respect of treatment.

It's very easy to be blinded by hope, sometimes it can pay to be a little skeptical.
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Postby Interrupted » Sun Nov 21, 2010 3:52 pm

bluesky63 wrote:Each person is a unique case study.


Well this is quite my point, surely we can't all be diagnosed and treated properly in a set time limit with the same level of exploration as is needed in very complicated or inevident cases. This we do know.
In some cases it does seem very obvious the difference in quality of investigation and length of time spent diagnosing to be as sure as possible that everything is covered and discovered that can be before surgery ensues.

I guess i'm wondering whether we need to catch under-treating (or over) at this early stage (if this is what it is) and bring it to the forefront rather than ignore it so soon to the detriment of desperate people who could be being treated more fully.
Considering how much we have learned over the last 6 months alone, the quality of care and treatment should follow and not stay the same as it was a year ago, surely?

I do disagree a bit though and think people can make as informed a choice as possible in as much as studying what we already know and from taking the time to read talks from respected individuals in the field, testimonials from patients already treated, and applying the medical and anecdotal evidence therein to decide where they go, who treats them etc. But the onus is heavy on us to do this at the moment for our own safety.
It is undeniably a hell of a task through brain fog though for sure! :roll:
28/07/10, 04/10/10, 16/11/10 - Dopplers x3 Ireland, Poland, Scotland.
12/10/10 - 1st procedure, Poland. Symptoms worsened. No improvement.
Verdict: I urge caution + am taking a back seat watching research ATM.
13/02/12 - Started Wheldon ABX protocol.
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Postby NotFound » Sun Nov 21, 2010 10:20 pm

L wrote:My concern when choosing a European doctor was that the azygous vein was being undertreated, judging by patient testimonials on German and Dutch web sites.



This is what happened to me. I was dismissed in Poland as having a "perfect flow", however when a certain (well know here. at TIMS) doctor looked over the MRV's from Poland, he found and clearly pointed out my severely pinched azygous.
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Postby livabird » Mon Nov 22, 2010 1:37 am

I had same azygos problem with euromedic. During my dopp;er i was told i had 2. which in itself is strange. i have sinced learned it can only be seen in venogram. about 2 months after procedure i got much worse than i was before procedure. i knew my azygos had not been done we contacted to ask if i came back could azygos be done and received reply azygos was fine. hummmm i decided to go to bulgaria here it turned out i restenosed 50 percent on left. right were i was stented 50 percent around stent and 80 percent above. my azygos was 50 percent blocked. i guess you could say i was under treated. i am not getting worse now but healing will be a slow process as i am ppms for over 30 years. i am hopeful with physio i will walk again eventually. it will be so much better when all our countries are fully onboard.

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Postby MaggieMae » Mon Nov 22, 2010 7:03 am

This is a very important topic. Thanks Interrupted.
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Postby Rokkit » Mon Nov 22, 2010 7:11 am

L wrote:Dr Sinan in Egypt reports that 95% of patients have a problem here, usually discovered when using the balloon as a diagnostic too.

My problem with this is there's no way to know at this point whether he would find the same issues in normals using that technique. I've been confident that other stenosis issues won't be found in many normals because they would have been noticed over the years during other procedures. But if you have to go hunting for these using the balloon, that's a whole new deal that really does need to be studied in normals as well. So I don't think Dr Sinan's azygous findings are a good measuring stick for potential undertreatment, at this point anyway.
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Postby L » Mon Nov 22, 2010 9:22 am

Rokkit wrote:
L wrote:Dr Sinan in Egypt reports that 95% of patients have a problem here, usually discovered when using the balloon as a diagnostic too.

My problem with this is there's no way to know at this point whether he would find the same issues in normals using that technique. I've been confident that other stenosis issues won't be found in many normals because they would have been noticed over the years during other procedures. But if you have to go hunting for these using the balloon, that's a whole new deal that really does need to be studied in normals as well. So I don't think Dr Sinan's azygous findings are a good measuring stick for potential undertreatment, at this point anyway.


I'd sooner know everything is clear. As for other stenosis issues, I don't think that anyone has paid much attention to these veins before, at least that was the impression that I got from one or two speakers at the various symposiums, from Dr Sclafani in his thread.

No, for me, using the balloon as a tool to see if obstructions exist seems sensible to me. The azygous vein is quite camera shy so if abnormal valves or webs are discovered then I'll be more than happy. Like he said at the SUNY symposium, since we have gone all the way to get the procedure, and since the catheter is in the vein, why not make sure the vein is clear? He's my doctor and if he says that the azygous vein is being under treated I have to take this to heart (or seek a second opinion)

But you're right, at the moment we just don't know, however, with my CCSVI procedure, I'd rather over treatment than under treatment every time.

I'll ask him what his thoughts on the subject are and report back.
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Under diagnosis is likely

Postby MarkW » Mon Nov 22, 2010 9:51 am

I think that early adoptors could be under diagnosed rather than under treated. There is no definitive list of which veins could have stenoses in them. Where does the surgeon/IR investigate for stenoses ?
I understand the risks of being an early adoptor. I may need to pay for a second procedure because my surgeon only de-stenosed 4 veins !! Also the size, duration and pressure of balloons to use is still being developed.

I decided to get therapy sooner rather than later with a surgeon who only uses balloons never stents. Your choice is personal according to your view of risk and money issues.

MarkW
Last edited by MarkW on Sat Nov 27, 2010 7:21 am, edited 1 time in total.
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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Postby Cece » Mon Nov 22, 2010 10:32 am

The risk with over-treatment is clotting which can potentially cost us the use of the vein entirely. Also potential over-treatment with too strong of blood-thinners, which would prevent the clotting, could lead to complications. :(
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Re: Under diagnosis is likely

Postby NotFound » Mon Nov 22, 2010 11:06 am

MarkW wrote:I think that early adoptors could be under diagnosed rather than under treated.


Well, they were IN my veins. It's not like I only had Doppler, I had full protocol, including the catheter venography.

I did see that perfect flow through my jugulars on the venography CD.

However catheter venography image of azygous was very very faint, so I don't think much could be seen there by anybody.

Did they not see it? Did they choose not to see it? Was it taking too much time to get deeper? Are they not comfortable doing azygous?

I don't know. Can it be seen on MRV? Heck, I can see it.

Oh, it was not "early" either. It was May 2010.
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Re: Under diagnosis is likely

Postby Interrupted » Mon Nov 22, 2010 12:34 pm

MarkW wrote:I think that early adoptors could be under diagnosed rather than under treated.


Good point :)

I do think in my case and that of the person I was talking to, it was all about time and willingness to explore fully - further than the stat' left/right jug' check at least.
I made sure they were going to include the azygous when I went. It was claimed it was fine in the report I got and i'm assuming they had a look while the procedure was under way but I cannot say this for sure because the surgeon did not do the after procedure visits as he should have so I could grill him. And now questions on the azygous have been raised above re: claims it has been checked properly that turned out to be false, if I go back there or elsewhere i'll make sure they don't get out of discussing it properly.
28/07/10, 04/10/10, 16/11/10 - Dopplers x3 Ireland, Poland, Scotland.
12/10/10 - 1st procedure, Poland. Symptoms worsened. No improvement.
Verdict: I urge caution + am taking a back seat watching research ATM.
13/02/12 - Started Wheldon ABX protocol.
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