Friday, January 21, 2011

May Thurner's Syndrome My DVT and PE Story

   Back in August I ended up in the hospital for 7 days with an occlusive DVT (Deep Vein Thrombosis which in layman's terms is a blood clot in the deep veins) From my groin (maybe abdomen too can't remember now exactly all they said) all the way down my left leg which then caused a pulmonary embolism.
     The last week in August started I guess as normal.   A few days earlier in the middle of the night I  tripped and smashed my knee into the tiled garden tub. It was late at night and dark . I didn't think anything of it. It was sore. I noticed the next day the knee was swollen. It didn't really hurt all that much. I did a web search that said there are a lot of veins around the knee and when knees get hurt they tend to swell then veins just reroute. It was minimally sore and I could walk on it. I really didn't give it much more thought than that.The next Wednesday I was at my son's High School freshmen orientation, and as I was going up the stairs at his new school, I felt something go in my back and then felt back pain. I figured I had twisted it wrong or threw my back out again. I told my son that it was sore enough that I wasn't going up and down the stairs. He needed to find all his up stairs classes and then we would go down and find all his down stairs classes.  Friday my back was still sore and mild pain seemed to be radiating down my left leg. Again I just assumed it was related to pulling something in my back. I went to My son's marching band practice at school. It was outside on the field. It was very hot that day, I also had been doing errands earlier and hadn't eaten or drank much. After it was over, walking from the field back to the band room, I started to have trouble breathing. I felt woozy and like I was going to pass out. I again ignored the symptoms and concluded I was dehydrated and maybe a touch of heat stoke. I made it to the band room and sat down in the air conditioning. After about 20 minutes I felt better. Not a 100% better but better and I drove him home. Actually friday night my back was feeling better. Saturday morning I got up early to run to the store to get stuff to make a salad for the marching band's family picnic later in the morning. The sax section was suppose to bring salads. My leg and back were still sore, but not excruciating sore. There was no major pain. I hobbled around the grocery store, got what I needed, and then drove home. That is when the leg started really hurting. I got home and couldn't walk on the leg. I hobbled to the couch. I knew the band picnic was a no go. Leg was super swollen. My husband was worried we might not be able to get my jeans off but we did and I put on a pair of loose fitting shorts. OK finally time to see a doctor. However in the past 30 years the only Doctor I had seen was my OB/GYN for yearly check ups. I didn't have a general practitioner. Always meant to get one but procrastinated. I am 46 and I procrastinate well. So it was off to the emergency room. My biggest concern was I couldn't walk on the leg. I didn't know what a DVT was or that it could cause Pulmonary Embolisms. The expression ignorance is bliss comes to mind. Well they took one look at the leg in the ER and sent me down the hall to the ultra sound lady. The result, I had a massive DVT. Since I was breathing heavy and the fact I told them that I almost passed out Friday night, they then sent me for a Cat scan with some dye stuff. Result came back that I indeed had a pulmonary embolism and I was very lucky it was small. The ER Dr. said that the standard course of treatment was to send me upstairs and put me on heparin. However I had a complication. When they did the CT scan they noticed a retro-periteneal hematoma. Basically internal bleeding in my lower back region. Since they didn't know wether it was an active or inactive bleed they said they couldn't put me on heparin. So instead they were going to put in an IVC filter (Inferior Vena Cava Filter) which they did. Later that evening the Vascular Surgeon came in to look at my leg and the situation. Side note he had to inform me that he was paged out of a Tampa Bay Bucs pre-season game to come see me. Anyway he took one look at the leg , said the IVC filter could clog and that my leg was so severe, that bleed or no bleed, I needed to be put on heparin or I might lose the leg. He said that problem out weighed the other problem. To this day no one has said that the internal bleed was related to the DVT or what caused it. Anyway they put me on Heparin. I was sent to ICU. I got no sleep that night.
       The next morning they sent me for another CT scan to look at the bleed to see if it had grown being on the heparin. It had not grown so it was determined it was an inactive bleed. That was a good thing. However during the CT scan they noticed some abnormalities in the uterus. Now the C word came out. I won't go into that one but they brought in a gynocoligist and all that turned out negative no cancer some fribroids and non cancerous cyst.
     All the time I am waiting for the swelling in the leg to go down and wondering when I would be able to walk again. The Doctors kept asking me if I had any recent major trauma like being in a car accident, falling down stairs etc. I told them no only hitting my knee on the tub. They brushed that aside as not a big enough trauma. Asked if I was on Birth Control or any hormone therapy. Again I said no. I haven't been on any hormones except for 3 months way back in college. I was asked if I had been on a plane recently. I haven't been on a plane in over 20 years. They asked if I had been bed ridden recently. Well obviously no, but I am a computer nerd and had been spending long hours on the computer working on my recipe data base. Nope they said that wouldn't do it. They kept saying I was too young and healthy for this. Which I though was amusing because I am 46, not all that young, and a bit overweight.
          After 7 days they sent me home on lovenox injections till the coumadin kicked in. The vascular surgeon said I needed to wear a compression stocking on the left leg. They told me I needed to get a primary care physician right away to monitor the coumadin and they recommended one to me. I love, love, love my new primary care doctor by the way. I was also told that I needed follow up appointments with the Vascular Surgeon and Hematologist. My leg was still swollen and I couldn't walk on it. They told me the swelling might not go down for a month or more. Oh great I thought. How am I possibly going to get around, go grocery shopping etc.? Well actually that was not a problem, I have a great group of friends that were willing to help in that area if needed. I have had more Dr's appoinments in the last 5 months than I have had in 30 years.
  The swelling did take about a month to go down. The left leg if you measure it is still bigger than the right, but by just looking at it you can't really tell. Jump ahead 3 months and all the tests the hemotoligist ran came back negative. I have no genetic blood disorder. The Vascular surgeon had since done more ultrasounds and the leg clots were gone so the hemotologist said it was time the IVC filter (Inverior Vena Cava Filter) to be removed. He said if they leave them in too long they are harder to get out, and if they can't get them out then you have to be on coumadin for life. I was told I needed to be on coumadin a standard 6 months minimum for the DVT PE incident.  Ok the thought of being on coumadin for life was not in my plan and having non original equipment inside of me didn't thrill me either. So I was scheduled to have the IVC filter taken out in Dec. So far through all of this and up to this point no one had mentioned May Thurner's Syndrome as a possibility. I was simply an enigma and they told me they didn't know what triggered the clots. They said that when they take me off the coumadin, if it happens again then I would be on coumadin for life.
     Early this past December  I went in to the hospital for the IVC filter removal. Prior to this of course I had to be off the coumadin for 5 days and was put on fragmin injections. As I understand it fragmin is similar to lovenox but you only need one shot a day.  I am an expert now at self injection, although when they first told me I had a major anxiety attack. I went into the hospital (out patient) for the IVC filter removal. I then met the Doctor who was going to do the procedure. He is an interventional radiologist. Earlier at the hospital they did more ultrasounds to make sure the clots were gone.The Interventional Radiologist, said it was a go for the procedure but on the ultrasound, although the major clots were gone, there appeared to be some residual clot in the pelvic or groin area. I can't really remember exactly what he said . All I got out of that was there was some residual clot. He said It didn't look like much so the IVC procedure was still a go. He would go in and look at what was there, clean it out, fix any problem and proceed with the IVC filter removal. I asked him about the possibility of the IVC filter getting stuck and he said 98% of the time they can get them out with no trouble. The other 2% sometimes they have difficulty because the filter is out of position or gets stuck in the side of the vein. Still no mention of May Thurner's Syndrome or putting in a stent. He simply said that if there turned out to be a problem they would fix it. 
      So onto the surgery/ procedure. The procedure was initially suppose to take about 45 minutes of course mine turned out to take 3 1/2 hours. I almost ended up part of the 2% but I am glad the Dr. was persistent and got it out. After the procedure, in my groggy state, the Dr. proceeded to tell me that I had May Thurner's Syndrome and that they put in a stent which should fix the problem. He then explained that without it I would most likely have more DVT's. He gave only the briefest description of what MTS was. I do remember him mentioning that because the problem was fixed I could probably get off of the coumadin in 4 months. Then he gave me my follow up instructions. Good thing he wrote all that down and gave it to my husband cause it all went in one ear and out the other. After I got home I started thinking about it and although I was relieved I finally had a diagnosis, it in turn brought up a ton of other questions. Being the computer geek that I am, I immediately began looking it up on the web. 

Anyway- As of now I am totally asymptomatic- No pain, no swelling, Left leg is slightly bigger than the right but you can't tell just by looking. However the Dr's are not all in agreement about stopping the coumadin. Apparently there is only a 50/50% chance of the iliac staying open even with the stent. It could become occluded again. So who knows? Also venous stenting (unlike artery stenting) has only been around since about 1995 and there are no long term studies. 


Prince of Da South said...

Having this condition was a life changing experience, I wouldn't wish anyone to have.
Check out my DVT story at:

Hope this helps!

Jaki said...

This Is almost word for word my experience, even down to pulling my specialists and surgeons away from their family Easter celebrations (in your case a sports game). Make me feel less alone and isolated to know someone else went through the same thing.