http://www.maythurnersyndrome.com/ Sun, 05 Sep 2010 06:51:19 -0500 MyBB http://www.maythurnersyndrome.com/showthread.php?tid=114 Thu, 12 Aug 2010 22:08:17 -0500 http://www.maythurnersyndrome.com/showthread.php?tid=114
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We do not allow BBcode, HTML, or links of any kind in signatures. Abusers of this policy will be banned and blacklisted.]]> http://www.maythurnersyndrome.com/showthread.php?tid=113 Mon, 28 Jun 2010 19:12:14 -0500 http://www.maythurnersyndrome.com/showthread.php?tid=113 PS I'm not sure how to use this site I see a Poll and New Attachment what is that? If someone replies to me Please know that I do not check my emails every day maybe once a week. Take care everyone its nice to know I'm not alone. I just wish that I knew someone with this who lived close to me.]]> PS I'm not sure how to use this site I see a Poll and New Attachment what is that? If someone replies to me Please know that I do not check my emails every day maybe once a week. Take care everyone its nice to know I'm not alone. I just wish that I knew someone with this who lived close to me.]]> http://www.maythurnersyndrome.com/showthread.php?tid=112 Sat, 08 May 2010 05:34:32 -0500 http://www.maythurnersyndrome.com/showthread.php?tid=112 ]]> ]]> http://www.maythurnersyndrome.com/showthread.php?tid=111 Thu, 06 May 2010 01:23:39 -0500 http://www.maythurnersyndrome.com/showthread.php?tid=111 http://www.maythurnersyndrome.com/showthread.php?tid=110 Tue, 06 Apr 2010 20:51:49 -0500 http://www.maythurnersyndrome.com/showthread.php?tid=110 ]]> ]]> http://www.maythurnersyndrome.com/showthread.php?tid=109 Mon, 29 Mar 2010 13:06:13 -0500 http://www.maythurnersyndrome.com/showthread.php?tid=109
My doctors had told me I had a blood clot but no one ever mentioned to me where exactly it was. I knew it affected my left leg but I wasn't sure of the actual location. I was informed that it was in my left iliac vein which is why my left leg was still having problems. My doctor kept prescribing me new pain pills after that in hopes that it would help. I was taking vicodin which ive been on since september and now tramadol which is a non-narcotic opiate but it works as a narcotic and i feel absolutely crazy taking it. These two drugs together gave me some relief but not enough to make me stop questioning what was actually wrong with me.

A couple weeks ago I emailed my doctor and requested a referral to go see a vascular specialist. At first she wouldn't give me the referral claiming she was taking care of the follow-up care and she didn't think anything was really wrong with me. However, I knew something was wrong and would not take no for an answer and got my referral and went to see the vascular specialist where he proceeded to show me my catscan slides and showed me where my clot was and how i have May-Thurner syndrome. At first i was mortified because first of all i didn't realize i had anything else other than the clot and secondly I couldn't believe that i would have gotten something like that after i had cleaned up my life. In June of 2009, I had quit smoking, started working out on a regular basis at the gym, started eating healthy and felt great about my positive lifestyle and then i got the blood clot and was so depressed that something like that could happen to me.

However, I went home and read the articles about it and found this website and i realized that with this condition, its something that would have happened anyways even if i wasn't on birth control and even if i was already the healthiest person alive. Knowing that has made my quality of life a lot better. I am going to get the stent put in, in mid june after school lets out and i am hoping that it helps get rid of some of my pain. I hate the fact i am going to have to go back on coumadin but if it helps relieve any of this chronic pain i have on a daily basis than i am all for it. And after reading people's stories on here, I felt much more connected to what this syndrome really means so i figured i would share my story. I actually feel better having told a community of people that understand what i am going through and wont just tell me to get over it. so thank you ]]>
My doctors had told me I had a blood clot but no one ever mentioned to me where exactly it was. I knew it affected my left leg but I wasn't sure of the actual location. I was informed that it was in my left iliac vein which is why my left leg was still having problems. My doctor kept prescribing me new pain pills after that in hopes that it would help. I was taking vicodin which ive been on since september and now tramadol which is a non-narcotic opiate but it works as a narcotic and i feel absolutely crazy taking it. These two drugs together gave me some relief but not enough to make me stop questioning what was actually wrong with me.

A couple weeks ago I emailed my doctor and requested a referral to go see a vascular specialist. At first she wouldn't give me the referral claiming she was taking care of the follow-up care and she didn't think anything was really wrong with me. However, I knew something was wrong and would not take no for an answer and got my referral and went to see the vascular specialist where he proceeded to show me my catscan slides and showed me where my clot was and how i have May-Thurner syndrome. At first i was mortified because first of all i didn't realize i had anything else other than the clot and secondly I couldn't believe that i would have gotten something like that after i had cleaned up my life. In June of 2009, I had quit smoking, started working out on a regular basis at the gym, started eating healthy and felt great about my positive lifestyle and then i got the blood clot and was so depressed that something like that could happen to me.

However, I went home and read the articles about it and found this website and i realized that with this condition, its something that would have happened anyways even if i wasn't on birth control and even if i was already the healthiest person alive. Knowing that has made my quality of life a lot better. I am going to get the stent put in, in mid june after school lets out and i am hoping that it helps get rid of some of my pain. I hate the fact i am going to have to go back on coumadin but if it helps relieve any of this chronic pain i have on a daily basis than i am all for it. And after reading people's stories on here, I felt much more connected to what this syndrome really means so i figured i would share my story. I actually feel better having told a community of people that understand what i am going through and wont just tell me to get over it. so thank you ]]> http://www.maythurnersyndrome.com/showthread.php?tid=108 Thu, 25 Mar 2010 19:57:26 -0500 http://www.maythurnersyndrome.com/showthread.php?tid=108
I went to my PCP, who put me on Coumadin and took me off the Lovenox when my INR reached 2.0. She seemed a bit inexperienced with DVTs, but I was not having any luck finding another doctor that could treat me so I just stuck with her. (2nd mistake) I was on Coumadin for 6 months. My OBGYN suggested I wear stockings and get my blood tested for clotting factors so I did go to a Hemotologist and all tests came back negative. He had no additional suggestions. A follow up US showed chronic partial blockage. Everything I was hearing was that post-thrombotic syndrome was to be expected and I could not do anything about it. (third mistake)

Now we come to about 3 weeks ago (4 years after first DVT). I started to notice more pressure in my left leg after sitting or standing just a few minutes and shooting pains in my groin. I went into a different hospital this time. They did an ultrasound and felt a new clot had developed in my femoral vein, though the clueless ER doctor could not tell me where. I was hospitalized for 5 days while being given Lovenox and Coumadin until my INR hit 2.0. While there I tried to contact the Radiology dept there to ask what kind of procedures their Interventional Radiologist could perform, but got a ditzy girl who was no help.

I contacted the Interventional Radiologist dept at UTSW in Dallas and they told me to make an appt as soon as I was released to discuss possible options. Spent 5 days in the hospital, and 2 days after being released, I met with the IR at UTSW. We scheduled a Venogram to check for May-Thurner and possible Thrombolysis for Monday (2 weeks after released from hospital).

During the venogram (through my popliteal vein behind my knee), it was found that my left common iliac vein, from just above my groin to interior vena cava was completely collapsed with no visible blood flow. There was no visible clot, except for the small chronic clot against the side of my vein in my groin. The clot that I was thought to have 2 weeks before was not present. Above that area, I had large collateral veins that went from my left common iliac to my right common iliac in my groin. The doctor did angioplasty, ballooning open my veins in a couple places, but the flow was still not sufficient. 3 stints were placed from the start of my interior vena cava down. They wanted to avoid placing a stent at my groin, where my leg bends at my hip, but after the first 3 stints and additional angioplasty below, the vein was still not opening enough. A fourth stint was placed for a total of about 8 inches of stint – 4 x 60mm with slight overlap. There are 3 SMART Control Stints in 10 and 12 mm widths and one Protégé stint where my leg bends at my hip (not sure of size). All are nitinol, which is a nickel and titanium compound.

My doctor did not diagnose May-Thurner. There was no site compression present since the vein was collapsed along the whole length, so definitive diagnosis could be given. He said the first clot could have caused the vein to collapse if it was present for a long period of time. I suspect with a C-Scan or MRI, they may be able to tell if the left common iliac vein is squeezed under the right common iliac artery, but I doubt I will pursue it because the treatment would not change.

The procedure was much more painful than I thought it would be. Two doses of Ativan and 4 doses of Fentynol during the procedure and I was still in tears. No overnight stay. My abdomen ached for two days and my lower back pain was terrible. I couldn’t breathe deep, sit or move much. I had to convince them to give me pain meds which helped helping though. Three days later and the pain is letting up though I am still pretty tender and still can't bend over.]]>
I went to my PCP, who put me on Coumadin and took me off the Lovenox when my INR reached 2.0. She seemed a bit inexperienced with DVTs, but I was not having any luck finding another doctor that could treat me so I just stuck with her. (2nd mistake) I was on Coumadin for 6 months. My OBGYN suggested I wear stockings and get my blood tested for clotting factors so I did go to a Hemotologist and all tests came back negative. He had no additional suggestions. A follow up US showed chronic partial blockage. Everything I was hearing was that post-thrombotic syndrome was to be expected and I could not do anything about it. (third mistake)

Now we come to about 3 weeks ago (4 years after first DVT). I started to notice more pressure in my left leg after sitting or standing just a few minutes and shooting pains in my groin. I went into a different hospital this time. They did an ultrasound and felt a new clot had developed in my femoral vein, though the clueless ER doctor could not tell me where. I was hospitalized for 5 days while being given Lovenox and Coumadin until my INR hit 2.0. While there I tried to contact the Radiology dept there to ask what kind of procedures their Interventional Radiologist could perform, but got a ditzy girl who was no help.

I contacted the Interventional Radiologist dept at UTSW in Dallas and they told me to make an appt as soon as I was released to discuss possible options. Spent 5 days in the hospital, and 2 days after being released, I met with the IR at UTSW. We scheduled a Venogram to check for May-Thurner and possible Thrombolysis for Monday (2 weeks after released from hospital).

During the venogram (through my popliteal vein behind my knee), it was found that my left common iliac vein, from just above my groin to interior vena cava was completely collapsed with no visible blood flow. There was no visible clot, except for the small chronic clot against the side of my vein in my groin. The clot that I was thought to have 2 weeks before was not present. Above that area, I had large collateral veins that went from my left common iliac to my right common iliac in my groin. The doctor did angioplasty, ballooning open my veins in a couple places, but the flow was still not sufficient. 3 stints were placed from the start of my interior vena cava down. They wanted to avoid placing a stent at my groin, where my leg bends at my hip, but after the first 3 stints and additional angioplasty below, the vein was still not opening enough. A fourth stint was placed for a total of about 8 inches of stint – 4 x 60mm with slight overlap. There are 3 SMART Control Stints in 10 and 12 mm widths and one Protégé stint where my leg bends at my hip (not sure of size). All are nitinol, which is a nickel and titanium compound.

My doctor did not diagnose May-Thurner. There was no site compression present since the vein was collapsed along the whole length, so definitive diagnosis could be given. He said the first clot could have caused the vein to collapse if it was present for a long period of time. I suspect with a C-Scan or MRI, they may be able to tell if the left common iliac vein is squeezed under the right common iliac artery, but I doubt I will pursue it because the treatment would not change.

The procedure was much more painful than I thought it would be. Two doses of Ativan and 4 doses of Fentynol during the procedure and I was still in tears. No overnight stay. My abdomen ached for two days and my lower back pain was terrible. I couldn’t breathe deep, sit or move much. I had to convince them to give me pain meds which helped helping though. Three days later and the pain is letting up though I am still pretty tender and still can't bend over.]]> http://www.maythurnersyndrome.com/showthread.php?tid=107 Thu, 25 Mar 2010 19:52:35 -0500 http://www.maythurnersyndrome.com/showthread.php?tid=107
Treatment is similar to others with May-Thurner, so even though I have not been diagnosed as so, I decided to join the forum. I hope to learn a little bit from others experiences and hope to be able to help others here.]]>
Treatment is similar to others with May-Thurner, so even though I have not been diagnosed as so, I decided to join the forum. I hope to learn a little bit from others experiences and hope to be able to help others here.]]> http://www.maythurnersyndrome.com/showthread.php?tid=105 Wed, 03 Mar 2010 22:44:00 -0600 http://www.maythurnersyndrome.com/showthread.php?tid=105
I have been taking Lovenox twice a day, 80mg each for now one month, with 3-5 months to go to treat my MTS-induced DVT. I used to take Coumadin, but my DVT got worse, so I was put back on just Lovenox.
Some things observations with Lovenox:

COST: With Aetna health insurance, I pay $60 for a up to a one-month supply. The pharmacist said that the one–month supply costs $2,000. Thank God for a good federal employee health plan.

BRUISING:I was given a Lovenox kit when I was discharged from the hospital – it has a booklet, video and sharps box to throw away used syringes. The booklet has a picture of the midsection a rather slim woman over-layed with numbered sections as to where to inject. Problem is that most of them are above the level of the bellybutton where there is hardly any fat. I have been alternating sides and injecting mostly near the midsection about 2-4 inches on the sides of the belly-button. If I go further out I have very little fat to pinch an inch as the video jokes. I had been getting bruises at the injection sites, some the size of dimes. I searched online and found that some patients were told by doctors or nurses to ice the area they are going to inject. I tried that and now I get no more bruises.
I put an ice cube or two in a sandwich bag. Press it on the area to inject through a T-shirt and once it cools down without the t-shirt- all for about 4-5 minutes. Then I use the alcohol wipe to disinfect the skin. Then I inject [ the fun part] and ice afterwards for 2-3 minutes without pressing too hard so as not to disturb the bubble of Lovenox. It has worked like a charm. The bruises I had take at least two weeks to go away. The theory behind the icing is two-fold- because it shirks the blood vessels, you are less likely to puncture one when injecting. And if you do hit one, the icing helps reduce the internal bleeding, which after all is what a bruise is.
I also found that if I inject more towards the love handles it is more painful when breaking the skin and after the injecting is done. I guess that when I walk the torso twists a little and the injection site gets a little pressure. On the other hand, injecting further out gave me no bruises before I discovered the icing trick.

PAIN: I find that the whole process is less painful than I had expected, been needle-phobic. The part that hurts is pushing the liquid through. I am trying o push it more slowly and that seems to help. Maybe that gives the skin more time to stretch.

AIR BUBBLE: Because the 80mg dosage I take is on the high side, some people take 40 or 60 depending on your weight in kilograms, 1mg for each kilogram is how they dose it, I like to blow out the air bubble before injecting. My PCP said it was ok to expel it, but the hospital nurse says it is ok to inject it and that it helps to “seal” the puncture. I have done it both ways, but prefer to inject less volume.

TRAVEL: Finally, when I travel, I bring the Lovenox on my carry-on. I called the manufacturer and like in the box, she warned me not to keep it under 58 degrees F for an extended period of time, and according to AA the plane’s luggage cargo area has has some heating but well below the 58F. I contacted TSA and they said they treat Lovenox like insulin – it is ok to bring onboard, but you are supposed just enough for you itinerary.
Nevertheless, I brought four boxes, told a TSA employee that I had injectable prescriptions, I put them on a tray and ran them through the X-ray. I had been told by the manufacturer that it is ok to run them through the X-ray three time – she said the scientist have not tested more times. I did not have to show proof of prescription or anything. This was at DCA. Maybe other airports give more hassle.
Anyone have other experiences with Lovenox or tips to share?]]>
I have been taking Lovenox twice a day, 80mg each for now one month, with 3-5 months to go to treat my MTS-induced DVT. I used to take Coumadin, but my DVT got worse, so I was put back on just Lovenox.
Some things observations with Lovenox:

COST: With Aetna health insurance, I pay $60 for a up to a one-month supply. The pharmacist said that the one–month supply costs $2,000. Thank God for a good federal employee health plan.

BRUISING:I was given a Lovenox kit when I was discharged from the hospital – it has a booklet, video and sharps box to throw away used syringes. The booklet has a picture of the midsection a rather slim woman over-layed with numbered sections as to where to inject. Problem is that most of them are above the level of the bellybutton where there is hardly any fat. I have been alternating sides and injecting mostly near the midsection about 2-4 inches on the sides of the belly-button. If I go further out I have very little fat to pinch an inch as the video jokes. I had been getting bruises at the injection sites, some the size of dimes. I searched online and found that some patients were told by doctors or nurses to ice the area they are going to inject. I tried that and now I get no more bruises.
I put an ice cube or two in a sandwich bag. Press it on the area to inject through a T-shirt and once it cools down without the t-shirt- all for about 4-5 minutes. Then I use the alcohol wipe to disinfect the skin. Then I inject [ the fun part] and ice afterwards for 2-3 minutes without pressing too hard so as not to disturb the bubble of Lovenox. It has worked like a charm. The bruises I had take at least two weeks to go away. The theory behind the icing is two-fold- because it shirks the blood vessels, you are less likely to puncture one when injecting. And if you do hit one, the icing helps reduce the internal bleeding, which after all is what a bruise is.
I also found that if I inject more towards the love handles it is more painful when breaking the skin and after the injecting is done. I guess that when I walk the torso twists a little and the injection site gets a little pressure. On the other hand, injecting further out gave me no bruises before I discovered the icing trick.

PAIN: I find that the whole process is less painful than I had expected, been needle-phobic. The part that hurts is pushing the liquid through. I am trying o push it more slowly and that seems to help. Maybe that gives the skin more time to stretch.

AIR BUBBLE: Because the 80mg dosage I take is on the high side, some people take 40 or 60 depending on your weight in kilograms, 1mg for each kilogram is how they dose it, I like to blow out the air bubble before injecting. My PCP said it was ok to expel it, but the hospital nurse says it is ok to inject it and that it helps to “seal” the puncture. I have done it both ways, but prefer to inject less volume.

TRAVEL: Finally, when I travel, I bring the Lovenox on my carry-on. I called the manufacturer and like in the box, she warned me not to keep it under 58 degrees F for an extended period of time, and according to AA the plane’s luggage cargo area has has some heating but well below the 58F. I contacted TSA and they said they treat Lovenox like insulin – it is ok to bring onboard, but you are supposed just enough for you itinerary.
Nevertheless, I brought four boxes, told a TSA employee that I had injectable prescriptions, I put them on a tray and ran them through the X-ray. I had been told by the manufacturer that it is ok to run them through the X-ray three time – she said the scientist have not tested more times. I did not have to show proof of prescription or anything. This was at DCA. Maybe other airports give more hassle.
Anyone have other experiences with Lovenox or tips to share?]]> http://www.maythurnersyndrome.com/showthread.php?tid=104 Mon, 22 Feb 2010 21:40:04 -0600 http://www.maythurnersyndrome.com/showthread.php?tid=104 http://www.maythurnersyndrome.com/showthread.php?tid=103 Wed, 17 Feb 2010 12:11:17 -0600 http://www.maythurnersyndrome.com/showthread.php?tid=103 My name is Jenna- Im from North Dakota and am 24 years old. I was diagnosed with MTS 3 months before delivering a healthy little boy in November of 2008. I hope this site helps me find the answers I've been looking for and look forward to learning from your experiences.]]> My name is Jenna- Im from North Dakota and am 24 years old. I was diagnosed with MTS 3 months before delivering a healthy little boy in November of 2008. I hope this site helps me find the answers I've been looking for and look forward to learning from your experiences.]]> http://www.maythurnersyndrome.com/showthread.php?tid=100 Tue, 26 Jan 2010 08:32:33 -0600 http://www.maythurnersyndrome.com/showthread.php?tid=100 [/color][/font]]]> [/color][/font]]]> http://www.maythurnersyndrome.com/showthread.php?tid=97 Mon, 25 Jan 2010 08:06:05 -0600 http://www.maythurnersyndrome.com/showthread.php?tid=97 My name is Danielle and I am 24 years old. I live in Harrisburg, Pennsylvania. I was just recently diagnosed with MTS about a month ago- Late december of '09- and I have been following and reading the posts here ever since. I recently joined because I have not been able to get any answers from my doctors so I figured I should I ask the people who know the best! This is probably the most emotionally draining thing that has ever happened to me, and finding support is really really tough. People just don't understand. I feel weird saying that, but I guess if you've been where I am you know exactly what I mean.]]> My name is Danielle and I am 24 years old. I live in Harrisburg, Pennsylvania. I was just recently diagnosed with MTS about a month ago- Late december of '09- and I have been following and reading the posts here ever since. I recently joined because I have not been able to get any answers from my doctors so I figured I should I ask the people who know the best! This is probably the most emotionally draining thing that has ever happened to me, and finding support is really really tough. People just don't understand. I feel weird saying that, but I guess if you've been where I am you know exactly what I mean.]]> http://www.maythurnersyndrome.com/showthread.php?tid=96 Sat, 23 Jan 2010 16:01:18 -0600 http://www.maythurnersyndrome.com/showthread.php?tid=96 http://www.maythurnersyndrome.com/showthread.php?tid=94 Sat, 09 Jan 2010 14:28:06 -0600 http://www.maythurnersyndrome.com/showthread.php?tid=94

Jeanne
]]>

Jeanne
]]> http://www.maythurnersyndrome.com/showthread.php?tid=99 Tue, 22 Dec 2009 08:30:47 -0600 http://www.maythurnersyndrome.com/showthread.php?tid=99 http://www.maythurnersyndrome.com/showthread.php?tid=92 Tue, 22 Dec 2009 08:33:11 -0600 http://www.maythurnersyndrome.com/showthread.php?tid=92
As a very active person, MTS has put a huge crimp in my lifestyle. Assuming that the stent works for me, can anyone tell me how soon I should expect to resume my running, hiking, and biking?]]>
As a very active person, MTS has put a huge crimp in my lifestyle. Assuming that the stent works for me, can anyone tell me how soon I should expect to resume my running, hiking, and biking?]]> http://www.maythurnersyndrome.com/showthread.php?tid=91 Tue, 22 Dec 2009 08:30:47 -0600 http://www.maythurnersyndrome.com/showthread.php?tid=91 http://www.maythurnersyndrome.com/showthread.php?tid=90 Sun, 06 Dec 2009 22:37:24 -0600 http://www.maythurnersyndrome.com/showthread.php?tid=90 Hello everyone! I had my first blood clot six years ago and was diagnosed with Factor V. Almost three months ago, the second one occurred, and since it was in the left leg, MTS was suspected. This tests were done for it, but the hematologist's office was slow to get back to me with the results. This past Thursday, December 3, they called and described MTS on my voice mail, without saying its name. The next day, my 32nd birthday, my day of teaching was one of the worst of my career. To top it off, the report from the radiologist confirmed MTS. Happy Birthday, Me! It may sound silly, but I am relieved to have an answer to why I have had pain for so long, why the clots reoccur, etc. So, I am looking forward to learning from everyone in this forum.]]> Hello everyone! I had my first blood clot six years ago and was diagnosed with Factor V. Almost three months ago, the second one occurred, and since it was in the left leg, MTS was suspected. This tests were done for it, but the hematologist's office was slow to get back to me with the results. This past Thursday, December 3, they called and described MTS on my voice mail, without saying its name. The next day, my 32nd birthday, my day of teaching was one of the worst of my career. To top it off, the report from the radiologist confirmed MTS. Happy Birthday, Me! It may sound silly, but I am relieved to have an answer to why I have had pain for so long, why the clots reoccur, etc. So, I am looking forward to learning from everyone in this forum.]]> http://www.maythurnersyndrome.com/showthread.php?tid=89 Mon, 30 Nov 2009 19:16:33 -0600 http://www.maythurnersyndrome.com/showthread.php?tid=89