There is really no way to say this and make it pretty, so I will just say it. Exactly two weeks ago today I was diagnosed with a blood clot in my brain. Cerebral Venous Sinus Thrombosis to be exact. This form of a blood clot is extremely rare and effects 5 people out of every 1 million. In 2012, Hillary Clinton was diagnosed with one and fully recovered.
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| This is a picture of the venous system in the back of the brain. The area that is not white is the clot. *Not my brain; just a picture |
What Happened?
Mother's day was wonderful. Actually Tomasz had a great weekend planned and I got to spoil myself a little. Mother's day weekend always happens to fall around our anniversary as we got married on Mothers day.I had a great weekend, but Monday at work I started to feel ill. I had a headache and thought maybe I had too much wine the day before. Later in the day I had some random tingling in my arm. I ignored it, and went to bed that night. Tomasz was traveling for work.The next morning I had tingling in my arm and leg. I went to the doctor and was told to go to the Neurologist with instructions that if I could not find one go to the ER. I called many Neurologists and finally found one that said I could come and wait in the office. If she had a break she would see me. I came in and she looked at me, and saw me right away. I was sent for an MRI of my brain. I had a series of three MRI's scheduled which take 30-35 minutes each. That means no moving for 90 min. In the middle of the second one, my whole body went numb and I had to stop. The technician said don't worry the last one is the least common place where clots would form; come back tomorrow. I woke up Wednesday and headed to work. I was in a meeting and all of a sudden I had no feeling on my whole left side. I got scared and immediately went to the Emergency Room. By the time I arrived I could barely walk. I had some blood-work and another MRI. My Magnisum was low. While laying in the bed, I googled signs of low Magniusm; numbness was a sign. I got an IV and expected to be sent home shortly.Problem Solved. I had been in hospital for 7 hours already and assumed no news was good news about the MRI. And then my heart sunk. The hospital actually paged my neurologist and she came to the hospital to inform me that I had a small 3mm clot in the left side of the veins in my brain. (These are the veins that remove blood from the brain along the side of your neck). I was told I would be sent home(what???) with blood thinner injections and in a few weeks I would have a follow up MRI. I begged to stay in the hospital. They assured me that I was healthy, and that with thinners my trusty body would re-absorb my clot. The risks of contracting a disease were higher than something happening at home.I opted for the injections vs. a pill as they were safe for breastfeeding. It is extremely important to me to breastfeed, and all my doctors agreed if it made me happy I should continue. I practiced giving an orange injections and then gave myself the first dose of Lovenox in my belly. Its good I have a little extra postpartum cushion left over!
What was the cause?
Right now we don't know the cause. CVST is common in postpartum women, although I am a little far postpartum. They have not ruled it out. Another risk factor is birth control. I had a Mirena inserted after having Julia. I've never felt right on it since day one.I actually had an appointment the following Monday to have it removed unknowing of the clot.Finally, I went to the hematologist today for extensive blood testing. This will rule out or determine if I have an underlying clotting disorder.
My Emotions
Over the past two weeks, I have had so many emotions. First was "why me"? Why did I get this, and why such a rare disease at that. Then the "why me"? Why did I have symptoms and catch it early instead of having a stroke? I go back and forth. As bad as this is, I am lucky that it is SMALL and I caught it early. Did I do something to cause this? My girls; this has been the hardest part. I came home and would cry looking at them. I could not think about not raising them. The first two nights at home, Tomasz was my rock. In my head I thought if I went to sleep something would happen. After much anxiety and tears, Tomasz talked to me until I crashed from exhaustion. God(and Julia) must have known how bad I needed the sleep because both girls slept through the night.
So after all this how did being "Type A" possibly save my life?
I googled " Best Hematologist in NYC" the day after I found out. I found a doctor that had many articles published, positive reviews, and was basically amazing. It took two weeks to be seen. It would have been longer if I had not explained my situation(and begged). So flash forward to today and I am sitting in his office. He comes in and looks at me and asks if I am in the wrong place. He goes on to say I am one of the youngest patients he has seen in a while. By the looks of the waiting room, he was not kidding. I tell him my story and he states that I am the first patient he has seen with CVST. He then asks how I found him. I told him my Google story. He goes on to say, you probably Google diagnosed yourself prior to even going to the hospital right? I look down embarrassed; doctors probably hate patients like me. Yes, err... I mean kind of. He asked why I turned to Google. I explained I had to know what was wrong and the causes and basically I am very Type A. He laughed and said being Type A probably saved your life. I am very glad I am in touch with my body as well as knowing when its reached its threshold. I also have learned in the past to trust my "Mom Gut". I also had been chalking up random symptoms like headaches and neck pain to being postpartum and tired.
Whats next?
Next week I get the blood-work results back. In mid June, I have a repeat MRI to see if the clot dissolved. By Saturday of this week the numbness had faded for the most part. Sunday was the first day I felt normal. No headaches, no numbness. Just a sore belly from the injections. I will take that any day. Breastfeeding is going great and I snuggle my girls and hubby a little extra each day. I pray to God to keep me healthy and thank him for keeping me alive.
