May Thurner. Just what are the symptoms?

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

May Thurner. Just what are the symptoms?

Postby Interrupted » Fri Sep 24, 2010 8:50 am

The other thread failed a bit so i'll just ask the question straight out here.

Are there any signs/symptoms indicating May Thurner Syndrome?

Aside from already having had several DVT's and/or swelling, is there anything else that might give a clue, since i'd imagine a lot of MT sufferers probably hadn't had the above when it was discovered?
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 AlmostClever » Fri Sep 24, 2010 1:04 pm

Interrupted:

I have a variant of M-T where there right iliac is either compressed or too small with a collateral formation. It's impossible to tell from the 2-d venogram.

Because I do not present with the classical symptoms - swollen leg and pain - I am having a difficult time getting someone to write/justify the order for a MRV or CT scan to get a 3-d picture.

I have less strength and control in my right leg (and numbness) but these symptoms are not enough to determine that someone is affected by this condition.

Doctors seem not to want to treat this unless you present with the classical symptoms (pain, swelling of affected leg - usually left leg).

It's like treating a cut only after it becomes infected. Insane!!!

A/C
If you can't explain it simply, you don't understand it well enough. - Al Einstein
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Postby Interrupted » Fri Sep 24, 2010 3:34 pm

AlmostClever wrote:Interrupted:

I have a variant of M-T where there right iliac is either compressed or too small with a collateral formation. It's impossible to tell from the 2-d venogram.

Because I do not present with the classical symptoms - swollen leg and pain - I am having a difficult time getting someone to write/justify the order for a MRV or CT scan to get a 3-d picture.


How have you found out you have it then, AlmostClever? This is what confuses me.

I know I have venous problems with my left leg but have never been able to find out quite what it is. If MT has little to no symptoms, how does anyone ever know whether to even suspect it? Baffling :(
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 » Fri Sep 24, 2010 4:19 pm

Interrupted wrote: If MT has little to no symptoms, how does anyone ever know whether to even suspect it? Baffling :(

I think for most people, because of the few symptoms, they would be fine living with undiagnosed May Thurner. For anyone with CCSVI narrowing in the azygous, where the blood gets rerouted, it's a very different story!

Most or many docs are now checking the lumbar veins and the iliac when doing CCSVI treatment, so that's how most people here are finding out about MT if they have it. Interrupted, I can't remember, have you been treated for CCSVI yet or do you have a doctor lined up?
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Postby AlmostClever » Fri Sep 24, 2010 5:16 pm

Interrupted wrote:
AlmostClever wrote:Interrupted:

I have a variant of M-T where there right iliac is either compressed or too small with a collateral formation. It's impossible to tell from the 2-d venogram.

Because I do not present with the classical symptoms - swollen leg and pain - I am having a difficult time getting someone to write/justify the order for a MRV or CT scan to get a 3-d picture.


How have you found out you have it then, AlmostClever? This is what confuses me.

I know I have venous problems with my left leg but have never been able to find out quite what it is. If MT has little to no symptoms, how does anyone ever know whether to even suspect it? Baffling :(


Ah, see, that's the problem! Docs don't know (or suspect) you have it until you have pain and a swollen leg! Doctors won't look for it (or order expen$ive scans/tests) until your leg looks like a grapefruit!

I only found out I had it because the doctor who did my Liberation has made it part of his routine to check the left iliac vein also. He also said it looked to him as though a collateral vein had formed and was taking up the slack so no problem. (I think it could be a compressed iliac that looks like a vein and a collateral but you can't tell from 2-d) They say this is an "incidental" finding, but why the hell is he looking in the first place? If there is no pain and swelling, there's no reason to look. Right?

If he was looking because he suspected this somehow affects drainage from the spinal cord, he should have fixed it! Right?

What if fatigue, numbness and weakness in the leg(s) are caused by decreased blood flow and oxygen/nutrient supply? Will we ever know?

What happens when your leg falls asleep? It gets numb and hard to move - maybe even feels dead! Why? No blood flow and oxygen! Uncramp your leg and it wakes up as blood flow and oxygen supply resume.

So if there is only a slight decrease in flow of blood, wouldn't it follow that your leg might only become numb and weak? Enough still drains so that your leg doesn't swell but it is slowed enough to deny enough oxygen. Sound plausible?

Because my blood flow from my legs is not shut off (nearly) completely, I don't have the "classical" symptoms of May-Thurner and so doctors won't treat. I posted some pics somewhere - I'll look for the link...

Why are they going in to check the jugulars on a "hunch" and when they see something significant in your iliac veins they do nothing? I thought the whole point here was to correct blood flow.

If you can think of a way to get a doc to order a 3-d MRV or CT scan for someone who doesn't show classic symptoms, please let me know! I've been pondering this for a month now!

A/C
If you can't explain it simply, you don't understand it well enough. - Al Einstein
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Postby Interrupted » Fri Sep 24, 2010 5:22 pm

Cece wrote:I think for most people, because of the few symptoms, they would be fine living with undiagnosed May Thurner.
Most or many docs are now checking the lumbar veins and the iliac when doing CCSVI treatment, so that's how most people here are finding out about MT if they have it.


Ahhh I see! Thank you for clearing that up for me Cece :D I couldn't find a clear answer to whether it was a case of making sure the specific veins were checked in ALL cases of CCSVI or they would only do it if there were signs/symptoms of MT.


Cece wrote:Interrupted, I can't remember, have you been treated for CCSVI yet or do you have a doctor lined up?


No, but will be at Euromedic in a couple of weeks, this is why I wanted to get my head around the case with this. To know what I can/can't expect the surgeons to be likely to agree to check 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 Interrupted » Fri Sep 24, 2010 5:28 pm

AlmostClever, brilliantly concise (and most clever) thank you for explaining so well!

Certainly then i'll ask them to check the applicable veins and see what's found. If there's a problem and I have to try and get my vascular surgeon on the case of it back here in the UK, i'll update as to what I can get her to do. Thanks again 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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Posts: 200
Joined: Sun Jan 14, 2007 4:00 pm
Location: UK

Postby AlmostClever » Fri Sep 24, 2010 5:50 pm

Image

Here's the 2d pic I mentioned - arrows show direction of blood flow.

Right iliac is messed up but how and why?

No symptoms other than right leg weaker than left, both legs numb. Is it the MS or the May-Thurner?
If you can't explain it simply, you don't understand it well enough. - Al Einstein
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Postby Interrupted » Sat Sep 25, 2010 9:42 am

At the risk of being a proper pain in the arse, what should it look like AC?
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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Interrupted
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Posts: 200
Joined: Sun Jan 14, 2007 4:00 pm
Location: UK

Postby AlmostClever » Sat Sep 25, 2010 10:30 am

Here's a diagram showing the common iliac veins behind the common iliac arteries.

May-Thurner occurs more commonly when the right CIA compresses the left CIV.

Hope the pic helps!Image
If you can't explain it simply, you don't understand it well enough. - Al Einstein
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Postby Cece » Sat Sep 25, 2010 11:31 am

That is a helpful pic!

Dr. Raju in Louisiana is an expert on May Thurner syndrome, I believe.
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Postby Nunzio » Sun Sep 26, 2010 4:49 am

AlmostClever wrote:Image

Here's the 2d pic I mentioned - arrows show direction of blood flow.

Right iliac is messed up but how and why?

No symptoms other than right leg weaker than left, both legs numb. Is it the MS or the May-Thurner?

Nunzio wrote:
AlmostClever wrote:HIya Doc. S! I was tossing this about in another thread but I am really left in the dark on this one! This is a picture from my venogram showing the blood flow in my iliac veins/IVC (for those playing along at home!). Can you give me your impression of what is going on here? I have argued that without a 3-d MRV or CT scan it would be difficult to interpret exactly. My doctor argues that without pain and swelling, he can't order the scan! My symptoms are numbness in both legs and the right is much weaker than the left. Have you ever seen and/or treated something like this? What can be done? Do you think this might need to be treated? Thanks in advance!
Since we are playing at home I will give you my assessment: Your left iliac vein is dilated respect to the right. This is a classical sign of May-Thurner syndrome. Your body has compensated using the iliac-lumbar vein as a collateral bypass. This vein eventually drain into the Azygous vein causing overload and impairing its ability to drain blood from your spinal cord. In addition it seems blood from the left Iliac vein is draining into the right Iliac vein. This would imply a blockage in the IVC, but I do not know where the tip of the catheter is. I am including a link to Dr. Galeotti CCSVI procedure. He is the only IR in the world with several years of experience on this procedure. He checks the left iliac vein and he fixes any problem found on venography irrespective of patient leg conditions. I would advice any IR doctor starting on this procedure to follow his protocol until they have enough experience. The following link is in Italian but, at least, you can look at the pictures. http://www.ospfe.it/attach/smcferrara/docs/galeotti%20.pdf

I posted this on Dr. Sclafani tread but it is relevant here too.
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Postby Nunzio » Sun Sep 26, 2010 5:10 am

AlmostClever wrote:Interrupted:

I have a variant of M-T where there right iliac is either compressed or too small with a collateral formation. It's impossible to tell from the 2-d venogram.


I found a paper describing your condition.
It has a nice diagram showing how it happens; in short the right iliac artery crosses the left Iliac vein almost at 90 degrees and blocks partially its flow( Classical May-Thurner) but also can interfere with the circulation in the right Iliac vein by running alongside of it and compressing it.
http://www.phlebolymphology.org/2009/07 ... s-disease/
Hope this helps.
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Postby Nunzio » Sun Mar 06, 2011 7:42 am

AlmostClever wrote:Image

Here's the 2d pic I mentioned - arrows show direction of blood flow.

Right iliac is messed up but how and why?

No symptoms other than right leg weaker than left, both legs numb. Is it the MS or the May-Thurner?

Now I got it and I know exactly what is happening to you.
As you know May-Thurner syndrome is caused by the right Iliac artery crossing and compressing the left Iliac vein(insert in picture below).
There is a variant affecting the right Iiac vein where the artery run on top of the right iliac vein and compresses it (large picture below). This split the right Iliac vein lengthwise and also block the flow in the left by crossing over it.
In your picture you can see the two vein on the left of the picture representing the Right Iliac vein split in two. Because the left Iliac vein is blocked too the flow uses the inferior split of the right Iliac vein to bypass it and then crosses over inferiorly on the other side of the right Iliac vein to resume its flow toward your heart.
Image
I know this is a bit complicated buy I am confident that this is what is happening to you. Did they treated you for this?
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Postby AlmostClever » Sun Mar 06, 2011 8:50 am

Nunzio,

Actually the scenario you presented made the most sense to me looking at the image because what appears to be a collateral is so close to the IVC bifurcation.

A stent was placed in 11/2010. Here is an image after placement. I believe it was probably a collateral vein that formed.

Symptom relief? Significantly less pain in both feet! Maybe related or not? We may never know!

One thing - there seems to be some back pressure as evidenced by the flow back down the right IVC so I will be getting an echocardiogram done to look at my heart valve.

Image
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