This space came to be back in 2008 during a difficult year, filled with health challenges including the pulmonary emboli that almost killed me and led to the diagnosis of a blood clotting disorder and later, a diagnosis of systemic lupus that vacated a previous diagnosis of multiple sclerosis. I’ve long been a medical mystery and 2016 proved to reinforce that fact. I wanted to chronicle all that has happened here on the blog so that subsequent posts that refer to this years health journey are provided a frame of reference.
2011 was another difficult year health wise with lupus attacking my liver and causing autoimmune hepatitis, a fall that blew out my right knee and required surgical repair of my ACL and medial/lateral meniscus and having my gallbladder removed.
Things have been fairly stable since then (save occasional bouts of interstitial cystitis) until October of this year. On October 14th, my head started hurting. It wasn’t a migraine (I’ve experienced those before), it wasn’t a tension headache (also experienced those before) and it wasn’t a sinus headache (lots of experience with those). This pain was localized on the lower left side of my head and unrelenting. I took some tylenol and tried to function. That Sunday we attended church and the vibrations of the worship music left me in excruciating pain. My husband drove me straight from church to the emergency room.
The doctor in the ER did not do any labs or scans. She felt certain that the pain was radiating from my neck to my head and prescribed a muscle relaxer and sent me home with orders to alternate heat and ice and follow up with doctor if not better by Tuesday. I was NO better on Tuesday so I went to see my primary care provider (a nurse practitioner that I love). I begged her to do something to figure out where the pain was coming from and to alleviate it. She had never seen me in such distress and sent me to the hospital across the street to be admitted for more tests.
The hospital gave me a cocktail of benadryl and Reglan that did nothing to alleviate the pain but did make me very tired. The hospital did a CT scan and MRI that revealed nothing out of the ordinary. The following morning (Wednesday) I fell backwards walking to the bathroom from my hospital bed. Despite that new symptom and not consulting with a neurologist, the attending doctor diagnosed me with an intractable migraine and discharged me home with orders to see a neurologist if my symptoms worsened. I called that day and made the next available neurology appointment for the next Monday.
While I waited for that appointment, I went to a chiropractor on Friday to see if he could help. The pain was a 10/10 and had been for a week. I was desperate for relief. My chiropractor had retired so I went to one referred by a friend. After describing my symptoms and him seeing how much pain I was in, he told me to go back to the ER and demand they find the source of the problem.
My husband took me to a different ER this time since I hadn’t had any luck at the other one. This ER doctor took me seriously and did additional MRI’s of my neck and spine, searching for the cause of my pain. While the MRI’s revealed some disc issues I wasn’t aware of, they didn’t explain the pain in the back of my head. She also started me on IV steroids which, for the first time in a week, did offer some relief and my pain went down to a 7/10. She sent me home with oral steroids and a referral to see a neurologist.
Monday morning, a full 10 days after the start of the headache, I went into the neurologist office. I was desperate. I was in pain. I was tired of doctors not being able to figure out the issue. I had fallen six times by this appointment because it felt like there was a magnet in the back of my head, pulling me down and backwards. The neurologist was kind, smart and thorough.
She said, “I need you to go back to the hospital so I can run some specific, specialized tests”. I was very hesitant. I hadn’t had a good experience with the attending doctor during my stay the week before so I resisted her suggestion. She kindly took my hand, looked me in the eye and said “There are two, possible three things that could be causing this pain. None of them are compatible with life if left untreated. I need you to let me run the specialized tests right now”.
My son, who had driven me to the appointment, looked up at me and said “Ma, you’re going to the hospital”. The neurologist reassured me that she would be in charge of my care and she would request a different hospitalist team follow me than I had the previous time. I reluctantly agreed.
Within hours of arriving at the hospital, they had run a series of tests and found a medicine that brought my headache to a 4/10 for the first time in ten days. I was able to fall asleep while waiting for the results.
The next morning, a neurosurgeon came into my room with a copy of my brain scan. The neurologist had ordered an MRV, which looked at the venous system in my brain. That test had revealed a massive blood clot in the left side of my brain that was occluding blood flow to that side of my brain. The pressure from the back up of blood was causing the excruciating pain. The location of clot was causing my weakness and dizziness, resulting in the falls. The neurosurgeon said this type of clot, a cerebral venous sinus thrombosis (CVST) is extremely rare with just 1500 documented cases per year. He said neurosurgical intervention was very risky and if necessary, he would not attempt it himself but would send me to the University of Florida in Gainesville. He explained that he didn’t know how I had survived for 11 days with this clot in my head and he said I was blessed to have visited that particular neurologist the day before because not everyone would have recognized the symptoms and ordered the correct test. He said he would be consulting with the hematology team to decide the best course of action to attempt to dissolve the clot and avoid surgical intervention.
Because I have an underlying blood clotting disorder (called lupus anticoagulant), I already have a hematologist that was following my PT/INR (a blood test that checks that the levels of Coumadin, the blood thinner I had been on since 2008, were at therapeutic levels to prevent clotting). A doctor from her practice saw me in the hospital and started me on a Heparin IV. Heparin is an extremely strong and risky drug used to thin blood and hopefully dissolve the clot. I had to have labs taken every 2-6 hours to make sure the Heparin level was ok. The plan was for me to remain hospitalized on that IV for seven days. I made it four days before the Heparin made me sick. Because vomiting increased my risk for internal bleeding, they made the decision to discontinue to Heparin and switch to Lovenox injections in my stomach twice a day. They repeated the scan over that weekend to determine if I was safe for discharge. On Monday, October 31st the scan revealed that the clot was dissolved enough for blood flow to s-l-o-w-l-y begin returning and I was allowed to go home. The twice daily blood thinner injections were ordered and my hubby was trained on how to give them to me. I was sent home with orders for a home health nurse to monitor my vital signs (blood pressure had been an issue in the hospital and could antagonize the clot) and orders to begin physical and occupational therapy for the weakness and dizziness that had not yet resolved.
It is December 31st now. Two and a half months since the start of this CVST nightmare. I finished home health PT on December 15th and began outpatient therapy. To be honest, it is kicking my butt and we will be adjusting our approach to a less aggressive one next week. Neurological recovery can’t be forced. The brain takes a long time to heal, so I’m told, so my usual over-achieving personality is not my best friend right now. I’m learning to be patient with myself.
I am following up with a clotting specialist at the University of Miami at the end of January. The mystery remains how I developed a massive blood clot while on therapeutic doses of blood thinners. In order to prevent future clots, doctors are frantic to identify how this clot manifested. I will remain on the blood thinner injections for at least six months and the clotting specialist will determine if that will be indefinite or if it will be safe for me to switch to an oral medication.
I currently still have a headache of 4-6/10 on a daily basis. I take Fioricet every 12 hours to keep it from worsening. My liver enzymes are elevated again which makes me nervous that autoimmune hepatitis could be coming out of remission so the medication may have to be changed to lessen the impact on my liver. I have (what can best be described as) vertigo that is debilitating. My home health PT worked with me to develop tolerance for the dizziness and that has improved. I have only fallen once since returning home from the hospital. I use a walker for mobility and need a wheelchair for long distances because I fatigue easily.
I can’t work right now, can’t drive and had to take a leave of absence from graduate school. I haven’t written because the glare of the computer screen makes me dizzy. Just to type all this out has required several breaks and took my headache to a 7/10. I am frustrated with my limitations on a daily basis.
I have a repeat MRV on January 6th that will give us insight as to whether the clot is shrinking. In twenty percent of CVST cases, the clot never dissolves and the symptoms become chronic. I am fervently praying that I am the other 80%. I’m not sure how this health journey will end but this is where I’m at now. I am thankful to have survived and hold on to that gratitude to get me through the long, grueling, boring days of recovery.