Jassmin Robinson’s Story

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My name is Jassmin Robinson and I am a 14 year old young lady from Ohio.  I was correctly diagnosed with May Thurner syndrome on January 1, 2008.   Another name for this syndrome is iliac vein compression syndrome, because the left iliac vein in the groin is compressed by the right iliac artery. This increases the likelihood of a DVT in the left leg.

I first noticed swelling in my left leg when I was 8 years old, and my mother took me to the ER when she realized that the swelling in my ankle was not going down.  The doctors in the ER wrapped my leg in a soft cast and sent me on my way.  The swelling continued up my left leg, so my mom next took me to Childrens Hospital.  Even though I was seen by many different doctors and a specialist, none of them could figure out what was causing the swelling.

The doctors there referred me to Ohio State University Medical Center where we met with a doctor who diagnosed me with lymphedema, and said there was nothing I could do about it except wear compression stockings.  I was told that I would just have to live with it and follow up with this doctor every 3 months.  My mom was frustrated and tired of not getting any answers about why I had primary lymphedema, especially since no one else in my family had it, nor did I have a big fall that could explain the onset of my lymphedema.

Therefore, my mom went to see my primary care physician who referred us to a doctor at Grant Medical Center.  He decided to do an MRV (magnetic resonance venography) and a venogram and he told us that I had May Thurner Syndrome.  He said he could perform an angioplasty, a procedure that is beneficial to treat it.

My first angioplasty was done in December 2006 and a second angioplasty was done in June 2007.  Finally my mom and I got the answers we were looking for.  I have a follow up appointment with my vascular surgeon at Grant every three months, at which point I have a venogram and he looks at my leg to make sure everything is going okay.

During a follow-up appointment on November 20, 2008, the doctor found a blood clot in my left internal iliac vein.  I was admitted to Childrens Hospital right away, and started on heparin, lovenox, and coumadin.  I was in the hospital for four days, and now see a hematologist at Childrens Hospital who oversees my coumadin regimen, and does my routine blood work to check my INR.

Originally, I was supposed to be on coumadin for only 6 months after my first clot last November, but my vascular surgeon decided that he wanted me to stay on coumadin until late August 2009.  At that point, he plans to place a permanent stent in my leg, because I have a stenosis, or a blockage from the clot.  If he doesn’t put a stent in soon to treat the problem and to prevent it from getting worse, I will more than likely need clot-busting drugs.

This disease has changed me in a number of ways.  I pay attention and listen more to what my body is telling me.  I appreciate my life and the people around me so much.  This disease and my experience have contributed to who I am today.  Despite some of the uncertainty and delayed diagnoses, I believe it has made me a better person.

my contact information:

e-mail- dazzy94@yahoo.com

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