DVT deep vein thrombosis forum |
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DVT & May-Thurner Syndrome
Started by Donna |
Posted: January 15, 2007 at 21:38 | |
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Has anyone who has experienced a DVT been diagnosed with May-Thurner Syndrome? If so, did you have a stent or stents put in your Iliac vein? 984
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Re: DVT & May-Thurner Syndrome
Reply #1 by becy_roberts |
Posted: January 18, 2007 at 11:33 | |
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Hi, my dad has had his 2nd dvt in his left leg, but unlike last time he is having many problems with it and experiencing all sorts of strange things. Could you explain a little bit about what this syndrome is? 992
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Re: DVT & May-Thurner Syndrome
Reply #2 by Angela |
Posted: January 29, 2007 at 04:21 | |
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I have May-Thurner Syndrome (also know as Cocketts syndrome). Its described as a compression of your left illiac vein by your right illiac vein-in other words, where your largest veins(illiacs) cross together towards the top of your left leg, the left one is being leaned on by the rights one, slowing down or nearly cutting off blood flow.Your veins can also be abnormally smaller than other peoples.Its a congenital birth defect (you were born that way) and its really, really rare. I've been searching like wild on the internet for someone else(who speaks English) who has this. I have two stents in my left leg and had my veins pumped or ballooned or some such really forward, new treatment, have also had Redavais (a strong blood thinner, stronger than Heparin) drip, drip, dripped slowly into my leg to try and thin my blood (but consider, I also have antiphospholipid syndrome-I won't get into it too much-just to say that its the opposite of a free bleeder, my blood clots abonormally). Anywho, NONE OF THIS HAS HELPED! I take blood thinner daily, and haven't yet had another clot, but am in pain, and stay swollen all the time.It aggravates your entire circulation because your blood isn't moving through your veins like it needs to, so it seems to try to get through other ways, which, needless to say, is uncomfortable and problematic. What are your experiences? I'm eager to share and listen. Thanks. 1055
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Re: DVT & May-Thurner Syndrome
Reply #3 by Me Again |
Posted: January 29, 2007 at 04:24 | |
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Oh yeah, its usually something that happens in just women from what I understand, so your father may not have to worry about this problem. Angela 1056
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Re: DVT & May-Thurner Syndrome
Reply #4 by Donna |
Posted: February 3, 2007 at 02:19 | |
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Angela, I just found out recently that I have May-Thurner Syndrome. I was never really aware of it until I had a DVT in September 2006 and had a very rare complication called Phlegmasia Cerulea Dolens, which translated means "painful, blue leg". I came very close to having my leg amputated which was hard to process because the whole thing happened so suddenly. I now have two stents in my left iliac vein and had to have a blood thinner called TPA while I was in the hospital, followed by Heparin. I then had to do the Lovenox shots at home and am on the six month standard Coumadin therapy. I am heading back to the doctor's in March and will find out if I have to continue taking Coumadin. I have seen my PCP, a hematologist and a vascular surgeon who told me that I am very, very lucky. I had to be taken to the hospital by ambulance and was told that that saved my leg and my life. I have learned so much and am continuing to learn more about all this. I sure have a great appreciation for what everyone else is going through. I thank God every day that I am alive and am very appreciate of how wonderful my family and friends have been. 1070
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Re: DVT & May-Thurner Syndrome
Reply #5 by Donna |
Posted: February 18, 2007 at 01:16 | |
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Just wondering if there is anyone else out there with May-Thurner Syndrome or has had Phlegmasis Cerulea Dolens. I would love to hear about your experiences with these things. 1123
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May-Thurner Syndrome
Reply #6 by Emily |
Posted: February 27, 2007 at 23:54 | |
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Hi, my mum has May -thurner syndrome and has had a stent in her left iliac vein. we can't find out anywhere how long she has to have this stent in her leg. Does it stay in permanently or does it have to be changed? Is there any litirature out there also on this syndrome? Any experiences and comments would be most welcome. Thank you 1153
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Re: DVT & May-Thurner Syndrome
Reply #7 by Donna |
Posted: February 28, 2007 at 13:30 | |
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Hi Emily, I have two stents in my iliac vein. How did your Mum find out that she had May-Thurner? Did she have a DVT or a complication of Phlegmasia Cerulea Dolens? I am searching for someone who had Phlegmasia as a complication of DVT. Most people do not know they have May-Thurner until something happens. I'd like to hear your Mum's story of how she found out. I was told that the stents will last a lifetime. I hope that is true. If you type in May-Thurner Syndrome, you should be able to find some good websites with additional information. Is your Mum presently on Coumadin? 1155
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DVT & May-Thurner Syndrome
Reply #8 by Emily |
Posted: March 1, 2007 at 23:32 | |
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Hi Donna Thank you so much for your reply. My mum found out she has May-thurner because after she had an operation for a pro-lapsed disc in her back, she suffered bad swelling in her left leg for over a month, so then they diagnosed her with May-thurner. She didn't have DVT. That is great to hear the stents last a lifetime and thank you for your advice about the searching for websites. I am not sure what medication she's on so will find out and let you know. Sorry to hear about your story Donna. I hope it all works ou for you. Will be in touch on here over the next couple of days with info on her medication. Takecare for now 1160
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Re: DVT & May-Thurner Syndrome
Reply #9 by Emily |
Posted: March 1, 2007 at 23:51 | |
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Hi again, Just been able to find out her medication and its Plavix (Clopidogrel) She has come off it though due to some bad side effects which may be the wrong thing to do but she's waiting to see the doctor about it. Will keep you posted. 1162
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DVT & May-Thurner Syndrome
Reply #10 by E |
Posted: March 4, 2007 at 21:19 | |
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Hi Donna Sorry to bother you again but I wondered if I could ask you a few questions about your case as this is really helping my mum. I just wondered, why was it that you had to have 2 stents fitted and where abouts did you have them fitted? My mum's is in the pelvic region near the aorta. Also which hospital treated you and by which doctor? We are in North West London on the NHS. How do you feel now? Do you feel all this has helped? Thank you again Donna for your help. I really appreciate it. 1165
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Re: DVT & May-Thurner Syndrome
Reply #11 by Bobbie |
Posted: August 24, 2007 at 01:15 | |
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My brother has been diagnosed with May Thurner Syndrome and DVT, he just got out of the hospital today, had seven stents put in and angioplasty. His blood clot was from the thigh to his ankle. He is currently on coumadin and Lovenox. Can anyone tell me why surgery can not fix this problem? Is it hereditary? He had the stents put in about 7 months ago and all of them collapsed. We are trying somehow to find possibly a surgeon to correct the problem if possible. We are new to this disease but it is taking a toll on our family. Also, is this a possible reason as to why he has never been able to have children? 2191
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Re: DVT & May-Thurner Syndrome
Reply #12 by Lisa |
Posted: August 24, 2007 at 01:31 | |
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At 19 I had a DVT from May-thurner's syndrome! I too have a stent in my illiac vein. It's a pretty big stent too, about 14cm long and 6cm wide. I was just wondering if you experience any pain, not necessarily a lot of pain but just the annoying aching pain in your hip or lower abdomen, near the hip? I continually have achy pain in my hip especially if I have been sitting for awhile. Just wanted to know if you experience any pain? 2192
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Re: DVT & May-Thurner Syndrome
Reply #13 by Bobbie |
Posted: November 16, 2007 | |
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My Brother has pain all the time, he tries to hide it but you can see it in his face when he hurts. 2673
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Re: DVT & May-Thurner Syndrome
Reply #14 by Diane |
Posted: November 16, 2007 at 05:01 | |
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Bobbie and Lisa, I have May-Thurner and I also had one Wallstent stent placed in my iliac vein. I would really like to find out if most people with these stents suffer from residual pain forever. It has been 3 years this month since I got mine and although I am very well now and my leg no longer swells I suffer pain every single day. If I take and Advil or Aleve the pain goes away, but I don't want to take pain meds every day...not safe to use every day. I wish we could keep this particular post alive until we attract more people with May-Thurner to share their story. I would be willing to start a May-Thurner group on Google Groups if we got enough people interested. 2677
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Re: DVT & May-Thurner Syndrome
Reply #15 by Beth |
Posted: November 21, 2007 at 03:21 | |
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I have May-Thurner Syndrome, I had a DVT in my left leg and had three stents put in. I now have Post Thrombotic Syndrome and ulcers on lower left leg and heel. This all happened five years ago, I use a walker at home and a motorized wheel chair at work (trying very hard to stay working) the pain is unbelievable and I also have Neuropathy in both legs and hands this all happened at the same time. 2702
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Re: DVT & May-Thurner Syndrome
Reply #16 by Diane |
Posted: November 21, 2007 at 04:09 | |
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Hi Beth, I am so sorry to hear that you have so much to contend with. Where do you live (U.S. or Great Britain or ?). Do you feel they reacted too slowly at the ER when you presented with your DVT? How soon were you diagnosed with May-Thurner Syndrome? If you are like the rest of us, you had never heard of May-Thurner before your DVT. I had never heard of it and my first clue was my DVT at age 57. Please post more details if you feel up to it, as I am sure there are others out there who would like to connect with us. 2704
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Re: DVT & May-Thurner Syndrome
Reply #17 by Donna |
Posted: November 22, 2007 at 04:55 | |
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Hi Beth, I am sorry to hear about your problems. It seems that May-Thurner can affect you in so many ways and you do not know that you have it until you suffer the complications. Do you remain under doctor's care on a regular basis? You mention Neuropathy--do you suffer from Diabetes? 2707
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Re: DVT & May-Thurner Syndrome
Reply #18 by Beth |
Posted: November 27, 2007 at 04:34 | |
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Hi Diane & Donna, I live in the U.S. New Orleans, I went to the ER my legs & feet were killing me and my left leg was swollen the doctor that saw me chalked it up to my age 40 at the time and put me on fluid pills, I only weighed 110 lbs.they made me sick!!! I saw several Doctors including a Hemotologist who refered me to a Neurologist (3 month wait for appointment) an she put me in the hospital and thats when the clots were found. The clots had already turned to scar tissue and destroyed the valve in my calf, so now I'm 45 and feel like 85. 2773
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Re: DVT & May-Thurner Syndrome
Reply #19 by Bobbie |
Posted: November 29, 2007 at 02:33 | |
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Well my brother is not doing any better, now his right leg is swelling. Does anyone know of any assistance he could get as far as helping to pay for the meds?? I just hate seeing him in so much pain :( 2792
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