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Hello - New to this board so please go lightly on me.

I am 36 now and I was diagnosed with MS in 2008, although at the time the neuro (for whatever reason) seemed to think my case was "not typical." While he thought it to be PPMS, RRMS was suspected and I am now on Copaxone. Symptoms started with vision problems (ophthalmologist referred me to neuroogist.) I also have bladder urgency/frequency, loss of sensation below the waist, some difficulty walking, unable to run, heat intolerance, some fatigue.

A couple of months ago I decided to make an appointment about a different issue. I have varicose veins in my left leg, along with swelling, bruising, and discoloration of the leg. It gets gray/purple from the knee down. I met with the dr. last week after he reviewed my ultrasound. He told me that he suspects May-Thurner syndrome. I had never heard of this before. I am going in tomorrow for a CT scan on the pelvic area.

I know little about CCSVI, but I am now finding all of these things could possibly be related. If I do have May-Thurner and went through with the procedure to put in the stent, what is the likelihood my MS symptoms would improve? Could this actually help? Has anyone heard of improvements to vision after treatment for May-Thurner? How about with sexual and bladder dysfunctions? Can damage caused by May-Thurner be reversed?

Thank you in advance for any thoughts/information.

welcome to TiMS

There are some people who have been treated for CCSVI (chronic cerebrospinal venous insufficiency) in other veins such as the jugulars and also had their May Thurner treated at the same time. Some of them have big improvements and some have mild and some have no improvements. But I don't know anyone who was treated only for May Thurner, as you're suggesting. Typically there are intraluminal abnormalities also found in the jugular veins, the azygous vein, or compression of the left renal vein. Jugular and azygous stenoses are typically treated by ballooning; May thurner and left renal vein nutcracker syndrome are typically treated by stenting, since these are compression syndromes, and a stent is able to withstand the compression coming from the nearby artery.

If you are seeing an IR for the May Thurner syndrome, then you could ask that IR about checking/treating the jugulars and azygous as well. Or you could go to one of the specialized CCSVI IRs who could treat everything including the May Thurner at the same time.

I had pretty big improvements for some of the symptoms you list after I had my bilateral jugular stenoses treated. Improvements in vision acuity, eye pain, ability to see brightness of colors. Also improvements in bladder frequency which I have had since I was 16! That didn't happen right away after the procedure but once it started improving it has lasted and I would call myself normal in that area which I have not been able to say for twenty years. My heat intolerance is improved but still present if it gets hot/humid enough. Balance is better, numbness is improved but still present in some ways.

As for how May thurner is associated with CCSVI, the idea with CCSVI is that the venous drainage from the brain and spine is slowed by blockages in the major veins (jugular, azygous). The iliac vein is not one of those major veins but a blockage in the iliac vein means that the flow that would be going through the iliac vein needs to be rerouted, and it may be rerouted into the cerebrospinal drainage veins. If there is also a blockage in the cerebrospinal veins, this additional inflow from the iliac vein will add to the flow that is slowed or refluxing because of the cerebrospinal veins blockage.

I've already written a lot but want to emphasize that CCSVI is in the discovery phase and there is some controversy as to whether partial blockages in the jugulars and azygous are harmful or harmless. My own jugulars were nearly completely blocked (99% blockage on one side, 77% blockage on the other) and personally I think that was harmful, especially considering some immediate and some gradual relief of symptoms after it was treated. CCSVI can be tested for by doppler ultrasound or by a more expensive MRI of the veins. Some insurance companies will pay for treatment. There is a lot of research indicating a strong association between MS and CCSVI although there is also research that failed to find that association.

Thank you for the reply - lots of good information. I really had no plans to be checked for CCSVI, and this is all happening in a sort of roundabout way. Once the results come in from the scan for May-Thurner, I will likely discuss it with the doctor.

there was an abstract on May Thurner in MS patients, let me look
http://www.jvir.org/article/S1051-0443(11%2900039-X/fulltext

May thurner was found in 17% of MS patients which is approximately the rate (6%-24%) that it is found in the healthy population meaning no elevated incidence of May Thurner in MS patients.

here's some past threads on may thurner
http://www.thisisms.com/forum/chronic-c ... 19979.html
http://www.thisisms.com/forum/chronic-c ... 13911.html
http://www.thisisms.com/forum/chronic-c ... 12808.html

Well, I had the CT scan a couple of weeks ago. As a side note, I figured it would be about the same as an MRI, which I've had no problems with, including the dye injection. The CT looked like a breeze. They said I might feel a "warm sensation" spreading through my body after the contrast went in. WOW. I literally felt like I was being burned alive from the inside out - the heat was INTENSE and quite unnerving. I started to sneeze a bit after, but didn't really seem to quite have an allergic reaction. They told me if I ever need another one done, to let them know about my past experience.

Anyway, I had the follow up with the doctor today - he is a vascular surgeon. He did not think that at this point I have May-Thurner, but it could be something that may still develop. There was slight compression on the vein, but not enough to warrant M-T. The vein that goes down my inner thigh is quite enlarged, and this seems to be the main cause of the swelling and discoloration right now. He recommends the Venus procedure and so I will be considering having that done in the near future so that I can get some relief of the dicomfort and heaviness in my leg.

So, after he went over everything, I had to ask a few questions. I asked if he was aware that I have MS, which of course he was from my charts and whatnot. Then I mentioned the interest of MS patients in CCSVI and he was also quite aware of that and while he's never done the procedures for MS patients, he is very interested in the information that's been coming out over the past couple of years. I found this very refreshing - a total 180 from the reaction I had when I brought this up to my neuro a few years ago. He even went so far as to encourage me to keep up on what comes out (especially longer-term results) and that if I really felt this was something that I wanted to pursue, he would be willing to take it on. However, he did state that he thinks that with the stage the research is at now, he'd tend to "prefer" to consider it a last resort - for people with the most debilitating cases of MS that have no where left to turn. Of course, that made me think - but who wants to wait until they are at that point??

So, now I feel like I'm a bit lost again. I never went to him with CCSVI on my mind - only to get some relief for my leg. But things seem to have a strange way of working themselves out sometimes. At this point I am going to give thought to the Venus procedure and make a decision about that. As for what will come after that - not sure for now.

I like hearing about the reactions from vascular doctors who aren't already performing CCSVI procedures. It gives a sense of what the attitude is, and his sounds good. I do not fit in his category of people who have it as a last resort! My MS is considered benign. But my cogfog and fatigue were especially severe and interfering with my life.

Thanks for sharing the follow-up. It's odd that no one else posted! There are people here who have been treated for May Thurner. We heard more about it back in 2010 than we do now though.

Yikes on the burning sensation with the contrast dye. Contrast is used during CCSVI venoplasty too.

If you did eventually choose to go forward with a CCSVI procedure, there are pros and cons to going with this doctor. If he hasn't done any CCSVI procedures, that is a rather large negative. There is a learning curve to finding and treating the stenoses without complications. But a rather large positive is to have your doctor be local. You would have the opportunity for follow-ups, which allows your doctor to catch restenosis or clotting.

Good luck with the procedure for your leg, I hope it brings relief.

Thanks for that additional info.
Just a side note, I realized the vein closure for the leg is actually the VNUS procedure, not Venus.