May-Thurner and MS/check it out

Katie41 · Post by **Katie41** » Sat Jul 17, 2010 8:01 am

Thanks to Cheer for this forum, and CCSVIhusband and Val for their info on May-Thurner, I have now been treated for a 90% occulusion in my left iliac vein with a long, wide stent. Although it is not a common condition, it seems from some of the posts on this forum that it may be a little more common in people with MS than previously known.

The great news, if you have it or think you have it, is that it is a recognized, treatable condition in the U.S. (and I imagine anywhere in the world). Insurance covers it and Interventional Radiologists and Vascular Surgeons treat it. They use the same technique as for CCSVI, but enter in the left groin area rather that the right. Even better, while they are in there, they can check for CCSVI! I had the two jugulars ballooned as they had restenosed a fair amount. AND....I had it done in Southern California!

My symptoms in my legs and feet were not bilateral. My left foot and leg were always more swollen than my right. I would get blood clots in the left and it was always much more discolored than the right. I frequently got stress fractures or sprains in that leg or foot. The right foot and leg did swell some and were somewhat discolored, but not nearly as much as the left. After Poland, everything was much better, but the symptoms that returned were in the left leg and foot. The swelling in my left foot and leg is now gone. The discoloration is less (my body is now trying to figure out what to do with all this new blood flow LOL).

I had 21 other MS symptoms that were greatly helped by the angioplasty done on Jugulars and Azygos when I went to Poland.

There are several references to it on this forum when you go to "search", check those out. And, I put lots of info on my "Katie Goes to Poland" thread. I thought that having a seperate thread for May-Thurner would be helpful so more people would have easy access to the info and more could be posted by others who have info on it.

Another piece to the puzzle for some.

CCSVIhusband · Post by **CCSVIhusband** » Sat Jul 17, 2010 8:29 am

Katie, glad you got it fixed. My wife's May-Thurner Syndrome stent is going in in a few weeks.

He's also going to check for CCSVI again ... although we're confident that everything else is still good (because my wife had a "web" in her azygous. - we asked the doctor to define "web" and he said it was a band of tissue surrounding the outside of the azygous and basically squeezing it shut like a tight rubber band). When he ballooned the azygous it broke the tissue and flow through the azygous is good (she feels good everywhere except the left leg - May-Thurner).

Again, glad some info I provided helped (and is medical fact - in spite of what some in another thread would say).

Can you tell us what size/length/brand of stent was used?

All the best ... hope your healing continues.

Also, there have been studies that persons with "MS" (I mean CCSVI) in addition to other vascular problems (ahem May-Thurner) are at higher risk to progress faster than those with MS without other vascular issues.

GEEEEEE, no kidding. Don't you think an occluded Azygous Vein AND May-Thurner - leaving nowhere for the blood to go (BUT A LOT OF BLOOD STILL COMING IN) - WOULD mean faster progress? COMMON SENSE.

And yet these "geniuses" want to continue questioning if CCSVI is real. Who cares if it relates to MS ... CCSVI alone is real. If it relieves "MS" symptoms - great!

But what if "MS" symptoms are the same as "CCSVI" symptoms (as they seem to be)? No ... let's WAIT years and years for research (and further progression) for something that can benefit some percent of people now, you've all convinced me now ... you win

Katie41 · Post by **Katie41** » Sat Jul 17, 2010 9:26 am

Too funny! Required logic courses for all elementary, jr. high, high school, and college students might go a long way to opening minds and clear thinking (MS fog notwithstanding LOL). The first classes should begin with med students and continuing education classes for drs.

I was sedated when the dr. told me the stent size. I'm not great with numbers anyway (although I'm much better since the procedure in Poland), so I'm not really sure. They won't have my records in the office for about a week. I'll let you know as soon as I know. It was definitely larger in length and width than most of the CCSVI stents I've seen posted.

Katie

IHateMS · Post by **IHateMS** » Sat Jul 17, 2010 9:38 am

does MT always result in clots?

Rokkit · Post by **Rokkit** » Sat Jul 17, 2010 10:55 am

IHateMS wrote:does MT always result in clots?

From my limited understanding the answer is no. Most people with MT are asymptomatic. Which makes it kind of insidious if it is indeed a risk factor for worse MS.

CCSVIhusband · Post by **CCSVIhusband** » Sat Jul 17, 2010 11:14 am

Rokkit wrote:
IHateMS wrote:does MT always result in clots?
From my limited understanding the answer is no. Most people with MT are asymptomatic. Which makes it kind of insidious if it is indeed a risk factor for worse MS.

Your explanation is spot on Rokkit. For facts about May-Thurner and some commentary see below:

Most people are asymptomatic with May-Thurner Syndrome. Therefore it is usually undiagnosed, and (if you don't have a blockage in the azygous system) typically not a problem because the blood will just flow through a different outlet to the heart.

The more serious cases do result in Deep Vein Thrombosis or clots in the leg veins, which result in swelling, coloring of the leg and pain/weakness.

Most cases of May-Thurner Syndrome do go undiagnosed, and therefore, though reported to be between a 2% - 5% issue (usually in young women in their 20s - 40s), studies have found it to be much more prevalent.

May-Thurner alone results in poor circulation through the leg veins system (if you believe output = input) and thus causes weakness, numbness, and pain. And blood refluxes from the blockage in the Iliac Vein thus slowing down the entire system. (Again here's that common sense/following simple logic thing that some people on this board and who dismiss CCSVI as junk science don't seem to have).

As Rokkit said, since blockage of the Iliac Vein (associated with May-Thurner) forces blood through other systems to get back to the heart, if the azygous is blocked (as common in MS) you are at a SIGNIFICANTLY greater risk for problems. Thus studies have shown patients with MS AND other vascular problems are at a significantly higher risk to quickly progress as it relates to MS.

What I don't get is why they can't put two and two together ('they' being people who cant separate CCSVI and MS) and say gee I wonder WHY people with a vascular problem are more likely to have "worse" MS (could it be MS has something to do with the vascular system - like I said "geniuses"), and who cares if they have MS if they have a vascular problem. Treat that - treat the vascular part.

I don't think May-Thurner is going to be a lot of the answer for MANY people, but it was for Barb Farrell, my wife, and now Katie41. I'm glad we caught it after less than 6 months of my wife's diagnosis - but don't let me sway you ... you should probably listen to the 4 people on this board who don't want you to get treated for a vascular condition SEPARATE from its impact on MS.

NotFound · Post by **NotFound** » Sat Jul 17, 2010 4:26 pm

Thank you Katie.

I don't seem to find how MT is diagnosed - does it have to be venous catheter?

I am still not giving up on finding my MS to venous blockage issue (so far - no CCSVI as per Poland, with good flow through my both jugulars)

Katie41 · Post by **Katie41** » Sat Jul 17, 2010 4:33 pm

NotFound: MT is diagnosed with MRI or veinogram. It may be diagnosed other ways too. I'll ask the dr. when I go for two week checkup.

NotFound · Post by **NotFound** » Sat Jul 17, 2010 7:54 pm

Katie41 wrote:NotFound: MT is diagnosed with MRI or veinogram. It may be diagnosed other ways too. I'll ask the dr. when I go for two week checkup.

Thank you again Katie. So it would be an MRI of lower body, right?

SickButHappy · Post by **SickButHappy** » Sun Jul 18, 2010 3:08 am

sorry if this was already discussed, but how can we suspect if we have May-Thurner??

Katie41 · Post by **Katie41** » Sun Jul 18, 2010 8:40 am

CCSVIhusband has good info on this. Check out his posts, too. It is often asymptomatic, but can have more swelling in left leg and foot than right, more discoloration in left than right foot and or leg, occassionally may have blood clots in left leg or foot.

IHateMS · Post by **IHateMS** » Sun Jul 18, 2010 8:58 am

this is amazingly logical..... and I am not a science person....

Katie41 · Post by **Katie41** » Sun Jul 18, 2010 10:31 am

The bottom line for diagnosis is if you are having the CCSVI procedure done, ask them to enter on the left rather than on the right, and have them look for the left iliac vein being impinged upon by the right or any other difficulty with the left iliac vein they come upon.

If you have not been able to find someone to do the CCSVI procedure, check with an interventional radiologist, particularly if you have difficulty with weakness in your legs or feet or left leg or foot, or poor circulation in them. Tell them you suspect May-Thurner Syndrome and get them to do a veinography. Do your homework and find out everything you can on the Internet search engines so you know what you are talking about. Look for multiple sources and check here for updates from others who may have found out more info. It will be interesting and helpful to see how many people actually end up having this syndrome.

While they are in there checking for May-Thurner, ask them to check your azygos and jugulars, also. Since their business is to open blocked veins, if they come upon them, they should angioplasty them.

sofia · Post by **sofia** » Sun Jul 18, 2010 11:27 am

I've had years of a discolored spot on my left leg. I have also once not long after I was diagonsed with MS had swelling of my leg. It was a couple of cm bigger then the other one, I was hospitalized cause of it, as I had reduced feeling due to MS, and doc could not be sure it wasn't a deep veine thrombosis. It didn't last long, and doc at hospital did not find a cloth. Maybe it is all conected. It was just put down to a one off, nothing to worry about thing. It is all very interesting, had almost forgotten about it all.

nicko · Post by **nicko** » Sun Jul 18, 2010 12:47 pm

I've always had pain in my left leg as well as being slightly purple. Recently when wearing socks I can notice it being swollen compared to the right. When I take off my socks at night I see I deep ridge where the elastic part of the sock was digging in.

I guess I should push my GP a little bit to get this checked