On 3/7/13, at 11 weeks pregnant, I was diagnosed with a DVT in my left thigh. The vascular surgeon that diagnosed me initially thought I was going to lose my leg. Luckily, that didn’t happen. I was kept for two days, put on Lovenox, and told I could resume all normal activity by the start of the new week. Trouble was, I was having a heck of a time walking and had such radiating pain from my lower back and left hip all the way down my left leg. So, my OB ordered strict bed rest and referred me to the Maternal Fetal Medicine group at McLeods. There I was told about genetic testing for clotting disorders, but they didn’t do any of it. They were mainly concerned with the fact that I was over 35 and pregnant, so they ordered blood tests to check for anomalies with the baby. None were found. After that, I had an ultrasound at 20 weeks, and I was having just as much pain and trouble walking as the day I was diagnosed with my clot. The ultrasound tech informed me she had suffered with a superficial clot in her calf the year prior and that I just needed to quit being dramatic and faking and that I shouldn’t be having any issues this far out from diagnosis. The MFM agreed with her!! Needless to say I haven’t been back to them since. I was then referred by my OB to a vascular surgeon that placed an Option IVC filter in June 2013. It was to be removed within 6 weeks of delivery.
Fast forward to September of 2013. I had been switched to heparin at 36 weeks. Around day 10 of taking heparin, I awoke at 4 am to very strong cramps. I got up and went to the bathroom to discover I was bleeding. My husband rushed me to the ER, as we’re luckily just a few minutes away. I was monitored for several hours until my OB finally arrived to find me bleeding too much and passing rather large clots resulting in an emergency csection. I was put under general anesthesia for the procedure, and found out after I woke up that I had a 20% abruption to the placenta and a very healthy 6 lb 13 oz baby boy.
In mid October 2013, I had a follow up ultrasound to check how the DVT was doing. The ultrasound tech informed me that my clot was from my knee to my groin!! I had NEVER been told that!! The ultrasound showed minimal improvement, so treatment stayed the same. My vascular surgeon attempted to remove my filter, but it had tilted and was becoming embedded in my vena cava. He decided it really needed to come out as he was very concerned the filter would puncture my vein, and referred me to an Interventional Radiologist at MUSC. Another ultrasound in January 2014 showed no change to the DVT in my left leg. My hematologist decided that since there was no change, that I should come off of the lovenox and should leave the filter in. She said that when I clot again, as she was sure I would, that she would then put me back on thinners. I asked about genetic testing (she had done some, but I’m still uncertain which ones), but she blew me off. I told her I was scared to come off of Lovenox with such a large clot in my body, especially since I was still having significant pain and a lot of trouble walking and unable to sit for long. She said it’s Post Thrombotic Syndrome and I should talk to my PCP about getting meds for restless leg syndrome. I asked her about May Thurner Syndrome, because I had read that it could cause significant pain like I was experiencing. Again, she blew me off. I immediately knew she was NOT the doctor for me and that there’s something wrong. I called the interventional radiologist I had been referred to and told his nurse what was happening. She put me on hold, and in less than two minutes he was on the phone ordering me to continue the lovenox and that his nurse would be calling me back in a day or two to schedule a ct scan to check the status of the filter. He also told me he grabbed a copy of my ultrasound from October 2013 that was sent to him, and from what he saw (without me even getting to ask him yet) it looked like I could have May Thurner Syndrome, but additional testing was needed. On January 17, 2014 my filter was removed. We were told it generally takes 30-45 minutes to remove one, but it took 3 hours because it was so embedded. I was brought back March 6th for a venogram, where it was discovered I do in fact have May Thurner Syndrome. When he went in to place the stents in my left iliac vein, he discovered my left and right iliac veins were completely occluded. He decided to put me on a stronger dose of lovenox for a month to see how it would do and would decide then how to proceed. I asked him what made him think another month of lovenox would do anything, considering I’d already been on it for a year and so far there was no real progress. So, he decided to get aggressive. He brought me in the following week and did thrombolysis, a thrombectomy with the Angiojet, angioplasty and placed two stents in my left iliac.
In July 2014, I started experiencing increased pain and swelling in my groin and thigh area of my left leg. Thankfully, I had an appointment with a different hematologist who noticed my pain and increased difficulty walking. He immediately sent me for a duplex ultrasound. It was determined that I had an obstruction of blood flow in my iliac veins. I was scheduled for another venogram with my Interventional Radiologist for the following week. The venogram showed that my stents had become occluded with clot. My Interventional Radiologist proceeded to clear them out by using angioplasty and then had to place two more stents. I was then told that the 120mg daily Lovenox that I had been taking, failed. After consulting with my hematologist, it was determined that I would be put on Warfarin and Plavix for life. Warfarin is to help prevent me from developing further clots and Plavix is to help keep my stents from clotting.
I still have severe pain and have issues sitting, but I can walk a great deal better than I was able to when I still had the DVT. My left foot is no longer pink, purple and red. After the plan my first hematologist decided on in January 2014, I’ve learned that I’m very lucky to be here and that I’m very glad I listened to my inner voice instead of blindly following a “trained professional”.
Moral of my story: Take charge of your care. Be your own advocate. Research everything and ask questions. Do NOT be afraid to speak up and ask for second opinions and so on. It could save your life.
I have had post thrombotic syndrome since my Deep vein thrombosis became chronic 5 months ago, so I have pretty severe scaring in the vein behind my knee and calf. So 3 days ago I began having horrible leg pain again, so I scheduled an appointment with the vascular surgeon...Lo and behold another blood clot! I thought I was finally heeling and the scariest thing about it is I developed the new clot on blood thinners. I just can’t win and the pain isn’t tolerable so pain meds every 4 hours uhg I’m running out of hope.
I have been struggling with the my quality of life for 19 years. I feel like I don’t have much to look forward to....I don’t think any of us say oh yay I get to wake up tomorrow in the same or worse pain as I had today. I’m sure my husband and kids get tired of hearing about my pain every day. I have chronic migraines and was having them almost every day, collagenous colitis, acid reflux with hiatal hernia, gastroperisis, inflammatory arthritis, Fibromyalgia, degenerative disc disease. I was in a motorcycle crash as a passenger when I was 16 leaving me with a severe broken tib /fib and ankle and skin grafts, I have had a total disc replacement in my L5 S1 in 2011, both SI joints fused in 2013, and c3 - C7 fused 2013 and 2017, I recently had ankle surgery in October for bone spurs and cartilage damage and a possible strayers if needed to lengthen my calf muscle on the leg that I broke in the accident....what should have been a simple surgery turned into a total nightmare!!! I woke up with the ankle cleaned up and the surgeon cut my achilles in three places (which was never even discussed as a possibility) and I developed DVT (deep vein thrombosis) on top of it. I was clotted from my ankle to my abdomen. I have been on blood thinners since and in and out of the hospital. I had to have like an angioplasty type procedure to try and open the vein. The dvt to my leg has now become chronic, they call it post thrombotic syndrome. I will now be on blood thinners indefinitely 😞 thus makes things I can take for pain very limited. I am going to a pain specialist tomorrow that had given me injections in my neck and back before in hopes that he can help me. I have been gaining weight every day I swear from the inactivity. and now has contributed to me now having sleep apnea as well. The medical bills just keep pilling up and I am drowning!!! I reluctantly filed for disability in 2017 and was approved the 1st time thank goodness. I was missing so much work and my bosses were not very understanding. Sorry for rambling but I have very little support or people who can understand what I’m going through. Has anyone out there had similar things and how have you gotten through it???? I’m hanging on by a thread 😢 Thanks for reading my life story without judgement....I hope