Are some of us being under-treated?

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

Re: Under diagnosis is likely

Postby L » Mon Nov 22, 2010 1:06 pm

Interrupted wrote:the surgeon did not do the after procedure visits as he should have so I could grill him.


Send him a letter, you really should. Or perhaps a telephone call is better.
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Postby sunlounger » Mon Nov 22, 2010 2:23 pm

Hi,

My azygous vein was missed by Euromedic in Jan and again in May,

I managed to get a Mark Haacke's MR protocol done here in the U.K,

And sent the images to Haacke and he did a report showing my azygous is narrowed and the problem in my left jugular is really high up and not where Euromedic have put the 2 stents :(

I might wait for E.H.C appointment or go to bulgaria early next year,

There is no way I could recommend Euromedic to anyone they are and have been clearly under treating people,
You might find that you’re not lost
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Postby esta » Mon Nov 22, 2010 4:08 pm

i too, was treated at euromedic clinic, poland in may and august. b oth times azygos was considered fine. i now have a stent in my rjv and am doing ok. i have stated before, i don't think i'm done yet, but am willing to wait and decide where to go in NA.
i believe -for myself - under treated...i understand its all very new,, and i'm just grateful for being able to use the word 'hope', in a confident way.
i do question, as i believe we were all in a studys over there, why they aren't opening the balloons larger, and studying that, knowing bulgaria is- with hardly any restenosis.
PPMS. Liberated Katowice, Poland
06/05/10 angioplasty RJV-re-stenodsed
26/08/10 stent RJV
28/12/10 follow-up ultrasound intimal hyperplasia
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Postby L » Mon Nov 22, 2010 5:26 pm

I really think that I've made the right choice here with Dr Sinan. Like I said before, if I feel no benefits (and after all it seems like there's a 33% chance that I won't) at least I won't worry about being undertreated and seek further intervention. I know that I'm repeating myself..
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Postby Interrupted » Tue Nov 23, 2010 4:52 am

sunlounger wrote:My azygous vein was missed by Euromedic in Jan and again in May...


Hi sunlounger, thanks for sharing your story. When you say it was missed, do you mean it wasn't checked at all or you got a false all clear on it?
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 Cece » Tue Nov 23, 2010 10:42 am

L wrote:I really think that I've made the right choice here with Dr Sinan. Like I said before, if I feel no benefits (and after all it seems like there's a 33% chance that I won't) at least I won't worry about being undertreated and seek further intervention. I know that I'm repeating myself..

I'll repeat too, I agree that he is a very good choice for all the reasons you state. :)
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Postby sunlounger » Tue Nov 23, 2010 1:15 pm

Hi Interrupted,

I was checked first by Dr Hartel's MRV and during the venogram in Jan,

Because I have SP and spinal lesions when I returned in May I asked them to kindly check my azygous again,

But was told it was fine from when first looked in Jan and they would not be checking again,

At the CCSVI Glasgow conference Dr Simka said in only 5% the azygous is effected :?
You might find that you’re not lost
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Postby CCSVIhusband » Tue Nov 23, 2010 1:22 pm

Which is funny because Dr. Zamboni found it in 86% according to his documentation ...

is it they don't know what they are looking for, or aren't skilled enough to find it? Dr. Sinan is finding it in as many as Dr. Zamboni ...

I'd trust it's WAY higher than 5% ... and more likely in the 80s - 90s.
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Postby Interrupted » Tue Nov 23, 2010 3:43 pm

If Sinan and Zamboni are both finding it at that rate... enough said really on what to lean towards at this point.
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 1eye » Tue Nov 23, 2010 4:49 pm

This procedure and its testing methods are in their infancy. One guy I know went, by himself, with wheelchair, halfway around the world, and was told they could find nothing. We are between a rock and a hard place. Some patients are under-treated, and we might say some who died were over-treated. The other big problem is that many doctors are still saying they don't believe there is anything to treat.

This disease has been badly dealt with for many years, and those who have a comfortable belief in one way of thinking about it are unlikely to spontaneously change. If any doctors, for or against, have a vested interest, they are even less likely to change.

We as patients need internationally recognized standards. These can be very long in development, as in three layers of clinical trials, or they can be quick to develop, as when a new surgery or tool is being used. Because 'MS' is at least a very complex set of symptoms which often results in disability and death, more study is needed.

For those have good reason to be confident in their doctors, treatment is possible, and in many cases very well executed. It is often not rocket science, but can be, although under-treatment makes it an easy way to make a fast buck. A measure of a good doctor is that he/she knows when to quit. This Liberation of the blood is, and should be, supported by ever-larger numbers of physicians. It can save lives.
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
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Postby sunlounger » Wed Nov 24, 2010 10:44 am

CCSVIhusband wrote:I'd trust it's WAY higher than 5% ... and more likely in the 80s - 90s.


here it is Dr Simka's presentation :wink:

http://tinyurl.com/2w8t9pq
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Postby CCSVIhusband » Wed Nov 24, 2010 11:32 am

sunlounger wrote:
CCSVIhusband wrote:I'd trust it's WAY higher than 5% ... and more likely in the 80s - 90s.


here it is Dr Simka's presentation :wink:

http://tinyurl.com/2w8t9pq


Yes ... look, if you want to go to Poland (know the risks) and think that's your best bet, by all means ... I'm not stopping you. I'd tell you to go local before you do, but again, I can't force anyone to do anything.

If you think there's only a 5% chance your azygous is an issue, OK ... good for you.

I'd trust Dr. Zamboni and his 86% figure, or Dr. Sinan and (I believe it was 91%) ...

All I'm saying is I'd BET it's a lot higher than 5% ... and much closer to 85% or 90%.
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Postby Cece » Wed Nov 24, 2010 11:34 am

1eye wrote:We are between a rock and a hard place.

Yet our spirits are not crushed.

Although if I were the guy who went half way around the world and was told they couldn't find anything, ok, that is pretty crushing.
A measure of a good doctor is that he/she knows when to quit.

I liked this, great point.
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Postby sunlounger » Wed Nov 24, 2010 12:32 pm

Hi CCSVI husband,

I think we have got are wires crossed somewhere,

Although I have been to Poland twice I would not go back,

Just thought you might like to see his report :)

I know it should be 85-90% and not 5%,
You might find that you’re not lost
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Postby esta » Wed Nov 24, 2010 5:53 pm

i agree with sunlouner, and i believe we even met in poland, i will not return there, and hope theywill find enoug out in NA soon. i hesitated going in august, but only a few knew as much then.

dr. simka did say, doing work on the azygos, at this poinr (then) was dangerous and complicated.
PPMS. Liberated Katowice, Poland
06/05/10 angioplasty RJV-re-stenodsed
26/08/10 stent RJV
28/12/10 follow-up ultrasound intimal hyperplasia
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