A May Thurner Question & Euromedic (Poland)

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

A May Thurner Question & Euromedic (Poland)

Postby Interrupted » Wed Sep 22, 2010 3:47 pm

Has anyone managed to be checked/treated for MT by Simka's clinic in Katowice?

As far as I know they don't check the applicable veins or correct side?
But since i'm going in a couple of weeks i'd like to know if it's possible to check for it there? And if possible be treated?

I have no idea if I have MT but have long had vein issues in my left leg that have been fobbed off by only one reluctant doppler done here in the UK (which took years to get out of the Dr's due to being relatively young). I feel they thought I was being silly about a varicose vein when in fact i've felt my left leg was a problem since I was about 10, and have always had worryingly mottled skin since birth (which the midwife apparently commented upon to my mother).
My left left has always felt strange, I can feel one vein in specific all the time that kind of feels like it's bubbling and aching from groin right down to calf where the vein becomes an apparent VV. I know it genuinely could just be a VV but it's always concerned me that the leg numbess seems to always coincide with how strongly I can feel the vein. Does this strike anyone as familiar or bear any relation to possible MT? Information on symptoms of the syndrome seems limited on searching other than explaining the basis :roll:
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Postby Interrupted » Thu Sep 23, 2010 2:00 pm

Anyone?
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 esta » Thu Sep 23, 2010 2:33 pm

hi interrupted
i was in katowice aug 24th and had a dobbler done by dr simka, at the euromedic clinic where he checked and decided, because i had swollen ankles to go in on the left side and ck my iliac vein for a suspected case of may thurners.
because this was my 2nd time, i may have gotten more attention. i would certainly be out-spoken and see, but it was seeing my ankles that did it. if you have no visible signs, you may run into trouble...or not, he's a wonderful dr. they're in there, what the heck...
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Postby Interrupted » Thu Sep 23, 2010 3:16 pm

Thanks esta, but what are the signs? Just swelling or...?
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 esta » Fri Sep 24, 2010 6:15 am

that i don't know, sorry...he said it, not me. i didn't have a clue...
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Postby Katie41 » Fri Sep 24, 2010 5:02 pm

Interrupted, check your private mail.
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Postby Interrupted » Sat Sep 25, 2010 9:43 am

Katie41 wrote:Interrupted, check your private mail.


There's nothing from you Katie? x
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 Katie41 » Sat Sep 25, 2010 12:10 pm

Oops! Sorry. I think I didn't type anything in the subject line. Anyway, a better explanation of the "bottom line" of MT and why it should be treated regardless of symptoms or no symptoms is on the "Dr.Sclafani answers some questions" thread. The poster is Nunzio, on Sept. 25, 9:43 a.m..

With CCSVI and MT, one of the main problems is not always the amount of flow, but the direction. The reflux into other blood vessels that puts added strain on them; or the reflux into the brain that leaves one without full oxygenation, iron deposits, and inflammation, is what seems to cause some or all of the damage that is causing the MS symptoms. Sometimes, the MS symptoms are far from the location of the blood vessel involved.

Check out Nunzio's post.
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Postby Interrupted » Sat Sep 25, 2010 2:45 pm

No worries, thank you I will x
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 » Sat Sep 25, 2010 3:55 pm

Katie41 wrote:With CCSVI and MT, one of the main problems is not always the amount of flow, but the direction. The reflux into other blood vessels that puts added strain on them; or the reflux into the brain that leaves one without full oxygenation, iron deposits, and inflammation, is what seems to cause some or all of the damage that is causing the MS symptoms. Sometimes, the MS symptoms are far from the location of the blood vessel involved.

It's also that the blood vessels depend on fast flow to keep the endothelium healthy and working right. Slow flow and refluxing has specific effects on the endothelium that weaken it and allow more leakage. (Diapedesis, possibly caused by an increase in adhesion molecules in the blood vessel walls? 'Leakage' sounds so simplified, like a junk science term, I don't like to use it.)

Here's the link to Nunzio's post:
http://www.thisisms.com/ftopicp-135606.html#135606
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Postby Katie41 » Sun Sep 26, 2010 12:45 am

Thanks, Cece. Great info. I love how the pieces come together on this site. Joan created something so special when she created this.
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Postby Vhoenecke » Sun Sep 26, 2010 9:38 pm

I had angioplasty at Euromedic in April. I now wish they would have gone in the left. The reason for this is all of this new information coming out. I do think that soon in the future that will be protocal for future surgeries.
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???????

Postby Badger » Mon Oct 11, 2010 2:50 pm

I had the procedure on 24th March as you can see and you may also have read my updates as well.

If not I am now in a worse state than I was before Poland but I have not given up, from what I have been reading on May-Thurner Syndrome it does sound possible that is what I now have.

My left leg is very weak which then affects my balance and walking,I also had my Azygos vein stented. There is no swelling or pain though so I am unsure.

I have seen my MS specialist in Glasgow, who advised me to go back on Tysabri, which I was on previously, but I said I will have a think about it.

I have sent an email to Dr Simka to see what he thinks and I hope this can be sorted. :? :? :?
<em>Badger
RRMS 2004</em>
Appt Katowice 23/24th March
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Postby silverbirch » Mon Oct 11, 2010 3:16 pm

I do seem to remember watching a video clip of Dr Z saying to go in from the left side and that it was an error in the written report and that It was left out

I know in this forum others may point you in the direction of the video
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