Nicole De Jong

My Experience with Cerebral Venous Thrombosis

By Nicole De Jong

On March 24, 2007 I gave birth to a health baby girl, Natalie. It was a difficult delivery, but I recovered just fine. Three days later we were released from the hospital and I was able to take Natalie home for the first time.  

One week after coming home, I began to feel pain above my left eye. I thought the headaches were due to postpartum hormones, or possibly from the epidural. I called my OB/GYN and he gave me a prescription for Imitrex (used to treat migraines), which did nothing for the headache.

Another week went by and the headaches increased. The pain was unbearable, I was experiencing nausea, vomiting, vertigo, extreme lethargy, and blurred vision. I couldn't sleep or leave my bed for several days because the pain was so severe. In just 2 weeks, I lost all 40 pounds of my pregnancy weight.  

I called my primary care doctor for an appointment. I was told they were booked, so I called my health insurance's 24-hour nurse line, where I was advised to go to the Emergency Room. My mom drove me to an Emergency Department near my home. The physician on call was curt and did not take my headache seriously. The physician ordered a CT Scan which came back normal. I was diagnosed as having a sinus infection and prescribed Vicodin for the pain and Amoxicillin for the infection. My mom and I asked if it could be an epidural headache, but were told it was not possible 2 weeks after delivery. We went home, filled the prescriptions, and I began taking them that night.

On April 14, the day after my visit to the ER, I lost all hearing in my left ear and continued to have an excruciating, unbearable headache. I returned to the ER with my father where a different physician diagnosed the headache as a postpartum anxiety headache. I was prescribed Lorazepam for anxiety and advised to discontinue the sinus infection prescriptions that the previous ER doctor had diagnosed.

Two days later, I was still suffering from the intolerable headache, unable to get out of bed or eat. My symptoms were increasing in severity and I had reached my breaking point. In desperation, my mother called a friend of the family who is a doctor. He advised us to call my primary care Doctor and demand an immediate appointment and request he order an MRI.

That afternoon I saw my primary care doctor who hesitantly ordered an MRI. Two days later, I had the MRI. We were contacted by the MRI technician and told that there was an abnormality and that I needed to go to my hospital's Emergency Department, where my primary care doctor would meet us to explain.

When I arrived at the Emergency Department, my mother and I were ushered into an office where my doctor and the Head of the Emergency Department explained that the MRI revealed a life-threatening blood clot in my brain. The exact diagnosis being a Left Dural (Cerebral) Venous Thrombosis. I was advised that I had to be admitted immediately to the hospital for an uncertain duration of time - the length of my stay would depend on how I responded to treatment.

I spent the next 4 days in the hospital and was placed on direct observation unit (DOU). I was given intravenous heparin (blood thinning) treatment. Because the MRI had also shown Sinusitis with Mastoiditis, I was given Unasyn 3 grams every 6 hours. My PT/INR (blood thinning test) was monitored every 5-6 hours. Physically I was wasted. Emotionally, I was devastated and severely depressed. It broke my heart to be away from my newborn daughter. Not knowing how long I would be in the hospital made my sorrow that much worse. Because my daughter Natalie was so young, she could not be brought into the hospital for me to visit with her. With the help of some wonderful nurses who wheeled me out in front of the hospital - IV's and all - I was able to hold her. The visits were bitter-sweet, I knew our visits were temporary, that she would return home soon with my parents and I would go back to my hospital bed without her.  

On April 21, my fourth day in hospital, my headache had subsided to a tolerable level, manageable with Tylenol pain reliever. The hearing in my left ear was returning, as was my vision, and I was tolerating food well. My INR was within therapeutic range, so the decision was made that I could be discharged from the hospital. I was placed on Keppra 750 mg twice daily to prevent seizures, Coumadin 6 mg once daily, and Augmentin 500 mg. After discharge, I began having my PT/INR monitored every Monday at the hospital's out-patient lab and followed-up every Thursday with my primary care doctor to discuss dosing and the results of my weekly lab work.

In June I had my first appointment with a specialist, a Neurologist from the University of Southern California (USC). She informed me that the clot was permanent and that I would have to continue to be monitored for the rest of my life. Her recommendation is for me to stay on Coumadin for another 6 months depending on my improvement, followed by aspirin therapy indefinitely, and to remain on the Keppra to prevent seizures for another 3-4 months. She said having any more children would be extremely risky and that if in a few years, once on aspirin therapy, I chose to try for more children I would have to be monitored very closely and it would be an extremely high risk pregnancy. She explained that I absolutely had to avoid any type of injury that could cause heavy bleeding or a head injury as it would be deadly due to the Coumadin treatment, and stressed that I keep in good physical health to avoid complications. This August, I have a follow-up appointment with my Neurologist to get the results of the blood work she ran checking for Factor V Leiden (genetic predisposition for blood clots), Lupus, and any other diseases that may have caused my high tendency to clot.

I still suffer from headaches, some days worse than others, but they are now usually manageable with Tylenol. The Keppra medication to prevent seizures reduces my appetite and causes me to be drowsy, so I still have some days that it's hard to get the energy to get out of bed. Due to the Coumadin treatment, I have to avoid alcohol and Vitamin K in my diet since it would affect the medication. I am also very careful to avoid cuts and bruises.

I am grateful to have such a strong network of support. In anticipation of the birth of my daughter, my mom had taken time off work to help me adjust to taking care of my child. It ended up being an extra blessing because she was able to care for my daughter while I was in the hospital, and was still home to help me recover when I was released after the thrombosis. My parents Dennis and Janice, my boyfriend, and his parents, also help in caring for my daughter while I go to my weekly appointments.

Emotionally, I have run the gauntlet. Through the amazing support of my family and loved ones and the life-saving treatment from my doctors, I am proud to say I am a survivor and that every day I live to see my daughter grow up is a miracle! I work hard to stick to my treatment regimen and at maintaining my emotional and physical health. I did nothing on my own, I have support every step of the way, and for me it was those people, and my daughter especially, that made all the difference.

"You gain strength, courage, and confidence by every experience by which you really stop to look fear in the face. You are able to say to yourself, 'I lived through this horror. I can take the next thing that comes along'." - Eleanor Roosevelt

Nicole can be reached at jeremydejong81@yahoo.com.

One Year UPDATE

April 15, 2008: It was a year ago this month that I was diagnosed with a cerebral venous thrombosis. So after my USC Neurologist ran every genetic test possible this month, and everything showed up completely normal, I felt such a huge relief since I had a new daughter. My Neurologist said that most likely my cerebral venous thrombosis (CVT) was due to the infection of Sinusitis with Mastoiditis that my MRI had shown with my thrombosis.

My clot is permanent and will never diminish in size, however, my doctors believe it was a one-time occurrence, and God-willing will not get any bigger. In October 2007, the anti-seizure medication (Keppra) that I was taking, caused me to have no appetite. Being on Warfarin blood-thinners still, my blood became extremely thin. I had to immediately discontinue Warfarin and was slowly weaned off the Keppra. My Neurologist advised me that since my thrombosis was most likely a one-time occurrence I would only have be on life-long permanent Aspirin therapy (325mg) daily.

Otherwise I could live a completely normal life, no more weekly blood draws to check Warfarin levels, since Aspirin therapy does not register on blood draws. I was told by my Neurologist and OB/GYN that having more children one day was absolutely possible and I would only need to continue my Aspirin therapy during my pregnancy. I wouldn’t even need the Heparin therapy normally used in women with thrombosis, since mine wasn’t due to a predisposition for blood-clotting.

After everything, the birth of my daughter, and my thrombosis experience starting only weeks later; I could never put into words how blessed I feel that it was not genetic, for my daughter’s sake, that I can return to normal living with out a worry of predisposition, and that as horrible an experience as it was I am truly all the better of a person for it. I look at everyday of my life with my daughter as a miracle, because a year ago April 18th, they told me I wouldn’t see her first birthday. It has taught me how absolutely precious life is and I cherish every moment I have.        

During my hospital stay in April 2007 due to thrombosis, my daughter's biological father, mentioned in my original story, couldn’t handle having the responsibility of a new daughter and a sick girlfriend and chose to leave our lives. But I was again blessed with a miracle; a friend, Jeremy De Jong, that I have known for 4 years, due to our parents being good friends, became my biggest support, best friend, father to my daughter, and now future husband. We are planning our wedding for September 2008.

In April 2008, as I was thinking about my one year survival anniversary, I was taken back to another aspect of my life that was at the forefront of my mind during my thrombosis experience. I am an adoptee. I was adopted at birth, and had never known any medical or personal family history in regards to my biological parents. This April I made the choice to contact the California Department of Public Social Services, and request any medical and personal information about my biological parents. I was most concerned with having that information available to my daughter, in hopes that she would be better prepared if any serious medical condition ever arose in her life.

 In May I received a package from the Department of Social Services, which included medical histories from both my biological father and mother. It also included my biological mother's personal contact information. Because I had consented to the release of my identifying information, at the same time I got my state package, my biological mother, Stacey, received one as well. She was informed that I had consented for contact, and a week later, I got my first letter from my biological mother.

 I immediately sent a letter back to her, telling her about my thrombosis experience and the need to know my medical information for myself as well as my daughter. She had included her phone number in her letter, and I chose to take that step a few nights later and call her. It was an extremely emotional phone call for the both of us, and she learned that she was a grandmother. We agreed to meet two nights later for dinner.

I cannot put into words the anticipation, fear, and years of emotional build up that was involved in that meeting. In the many questions and answers we both had for each other; I learned that my biological great-grandmother and great aunt had both died of heart disease at very young ages, and that my great uncle, Lyle, and my grandmother, Patricia, had both undergone triple bypass heart surgeries. A year after my grandmother's triple bypass she already again had 100% heart blockage in those arteries. My grandmother takes both aspirin (81 mg) and Plavix daily for the prevention of more clotting. And although they had never been diagnosed with any genetic predisposition for thrombosis, all their doctor's had warned the family that they had extremely "sticky blood". I so far was the youngest to experience the effects of it.

 Since that first meeting we have continued building a relationship, and are now a normal part of each other's everyday lives. I have meet all my maternal biological family and in turn they learned they had three new family members; myself, my daughter, and my fiancé. My adoptive family was a constant support through the whole process; they understood that after my thrombosis experience it was a part of myself that I needed to connect with. We all had become such a part of each other's lives, that at my wedding in September I was blessed enough to truly have my whole family present! It was the best gift I could have ever dreamed of!

 Now with my two year survival anniversary coming up in April 2009, I look back on my original thrombosis experience as my true second chance at life!

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