Does anyone else have May-Thurner Syndrome?

[Glitterwitch]

Whilse I was in St Tomas' it was suggested that I might have May Thurner Syndrome as well as APS which would go some way to explaining my blood clots. Anyone else heard of this?

[MaryF Administrator]

Hello there, not one I have. But I have found these for you to look at:

my.clevelandclinic.org/diso...

and also this one: ncbi.nlm.nih.gov/pubmed/188...

It will be useful to see on our forum if anybody else has this. Best wishes. Mary F x

[Glitterwitch in reply to MaryF]

MaryF, thanks for that - I have just been looking at those sites myself. I must say they seem to describe my case and my treatment almost exactly. Will be interesting to see if anyone else has this diagnosis.

[MaryF Administrator in reply to Glitterwitch]

I shall await to see what happens.. do you need any more papers: This one popped up, sorry forgot to load it: ncbi.nlm.nih.gov/pmc/articl...

and: youtube.com/watch?v=EXCRkb4...(Not working as expected?)

Mary F x

[Glitterwitch in reply to MaryF]

Thanks - that seems to be it in a nutshell. It does help to know that there is a reason for the first blood clot. I guess this coupled with APS is not a good combination - I always thought I was special !!

[CanaryDiamond10]

Is that guy human? I think he is Cyborg. He only blinked once during that dissertation. Actually, the Cleveland Clinic is one of the state of the art hospitals in our country. They have the main MD for my odd disease of CNS vasculitis (quiessent/quiet) for right now. They won't say they killed it or got rid of it. Just that it is sleeping now and the APS is responsible for current headaches and other symptoms. He is comparable to the famous Prof. Hughes except much fewer people have CNS vasculitis than APS. Glitterwitch, did you already get a stent to open that vein or is that what they are planning for your future? You are special, of course, by the way.

Warm wishes,

Canary

[Glitterwitch in reply to CanaryDiamond10]

Canary,

I had one stent put in but it "squashed" within a week and a clot built up behind it. Clot was cleared with the "clot busting" drug and a stronger stent put inside the first one and then inflated. So far so good! It really is amazing what they can do..

[Hidden]

wow interesting!! I need to read more about this!

[CanaryDiamond10]

Sorry, now I remember! They cought you just in time. It IS amazing what they can do. You must have had an angel on your shoulder to catch it just in time. Nice clot-busting drug, gone in a day! You are a lucky one! I hope all stays stable for you. If you get any more lucky they'll be naming a disease after you, Glitterwitch. I had a case of Glitterwitch. They gave me medicine for my Glitterwitch. My Glitterwitch is acting up. Oh sorry, a very silly day for me. I better stay off the computer.

stay well and warm wishes

Canary

[Glitterwitch in reply to CanaryDiamond10]

Fame at last !!!!!

[Cheezhead]

They are thinking I have MTS (May Thurner Syndrome) - I have tested negative for all other clotting possibilities with my blood (Factor 5, Lupus, Factor 2, etc) I am 38 years old. After a bunionectomy and the removal of an accessory bone in my foot I developed a DVT in my entire left vein up through my pelvis to the inferior vena cava 2 days before I was to get my cast removed.

They took off the cast and put me in the hospital 5 days on Lovanox injections and Coumadin. 2 weeks later and my leg still looked like an elephant leg so I saw a vascular surgeon who wanted me back in the hospital immediately for clot busting treatment (TPA i think it's called) - CRAZY PAINFUL - at least it was for me! I was in the ICU for 2 days and a regular room 1 extra day then home. They found a huge clot in the iliac vein and a few veins were stenosed so they did angioplasty but opted against the stents for some reason.

I get rescanned in 2 months and if I'm clot-free then they will go into my neck again and pull out the abdominal filter. I'm going to ask them during the scan to definitely tell me if I have MTS or not. They still are not sure if I'm on Coumadin for life but I'm having trouble staying at a therapeutic level (yesterday I was at 7.3!)

[Lure2]

Hallo, I know nothing of that syndrome but you must try to get them have your INR in range! Read what I wrote just 1 minute ago on this site. That could be for you also. I selftest but I am not a doctor but I know a lot of how to keep an INR in range .BUT we are all different also.

My best wishes and I hope you have a real good APS-doctor!

Kerstin in Stockholm