In the late fall of 2008, after the sudden and terrifying onset of extreme double vision while driving my car in heavy traffic, I had the sinking feeling that something terrible was happening inside my brain.

Based on the ophthalmologist’s guess that the blood pressure medication had caused the double vision, I stopped the Lisinopril and anxiously waited for my vision to return to normal. Every morning I awoke with fresh hope that the double vision had disappeared. But as my eyes opened, I saw the same distorted and disorienting scene in my bedroom day after day. Nothing had changed.

Then something did indeed change—but not for the better.

In the middle of the night—it was a week before Thanksgiving—the explosive sound of a gunshot woke me from a deep sleep—it would be the last deep sleep I ever experienced. The loud noise jolted me upright in my bed. Could someone be in trouble in the riverbed behind my house? Should I call the police?

Without turning on the lights, I put on my bathrobe and slippers and crept outside, trying to see or hear anything suspicious. I saw nothing but darkness and heard nothing but silence. I waited for a few minutes and then went back to bed and fell asleep.

It seemed like just a few minutes had passed when I heard more sounds of gunshots. I sat up in bed and waited. Then I heard a series of popping and hissing sounds.

I realized with horror that the explosions were coming from inside my head. I lay my head back down on the pillow. Within a few minutes I heard yet another new and frightening sound—the pulsatile sound of my heartbeat in my head. The loud swooshing sounds, like waves crashing on a beach, pulsed in sync with the beating of my heart. I lay in bed paralyzed with fear, in unknown territory without a compass.

The next day I called the radiology department and scheduled an emergency MRI scan of my head. By good fortune, a radiologist specialized in neurological diseases was on duty. Right after the procedure, he came into the waiting room with a grim look on his face. I barely breathed as he told me the news.

The radiologist said that I had multiple carotid cavernous fistulas that were causing the cavernous sinus behind my eyes to balloon out and press on my eyeballs and the ocular nerves. He said that I was at risk of going blind and that I needed to go back to the ophthalmologist right away. He said that there was no time to discuss this rare diagnosis further and that I needed to get help immediately.

If I hadn’t been so anxious about going blind, I would have thought about the diagnosis and gone directly to a neurosurgeon. Instead, a friend drove me to see Dr. Soloway again, the ophthalmologist. I told him about my diagnosis of carotid cavernous fistulas and he responded, “Well, that certainly explains your diplopia, along with the blurred vision. You need to go to Albuquerque and see the neurosurgeon—right now.”

Carotid cavernous fistulas are a rare condition. The word fistula refers to an abnormal connection between two organs, caused by weakening of the wall of one of the organs.

In my case, I hypothesized that the extremely elevated blood pressure from the thyroid storm during the eight-day raft trip had weakened the walls of the branches of the carotid artery in my brain. Instead of the high blood pressure rupturing one of the branches of the carotid artery and causing me to die from a massive cerebral hemorrhagic stroke—probably a quick and merciful death—the area of weakened walls eventually formed hundreds of little channels to connect with the cavernous sinus—a big, bowl-like structure that contains a pool of thin-walled veins.

Those little connecting channels had sprouted in response to the persistent high arterial pressure and served much like relief valves by allowing the high pressure arterial blood to by-pass the arterial capillaries and be dumped directly into the low pressure veins.

When the larger arterial vessels burst through into the venous system, they made explosive sounds that I had initially mistaken for gunshots. The loud swooshing sounds in sync with my heartbeat related to the turbulence of the blood as it by-passed the normal flow.

In a healthy brain—without the fistulas—the arterial blood flows from large vessels to increasingly smaller vessels until it reaches the micro-capillaries where it meets the tiny vessels in the venous system. The venous blood flows to larger and larger vessels until it ultimately returns to the heart for re-oxygenation and recirculation.

The veins—not equipped to handle blood under high pressure—became enormously dilated in my head, causing my eyes to bulge out and the corneas to swell, and resulted in unbearable pressure and pounding in my head.

The delicate nerves that operate the eye muscles had become partially paralyzed, given that they travel through the cavernous sinus on their way to the muscles that make the eyes move to the right and left and up and down.

Contemplating the mess in my brain left me feeling sickened.

Almost all of the doctors I encountered had to look up the diagnosis because the carotid cavernous fistula condition is so rarely encountered—usually only after massive trauma to the head.

Once again, I was alone in unfamiliar territory, trying to make sense out of each of my horrifying symptoms. Overnight I became thoroughly versed in the complex anatomy of the brain, including the eyes, the nerves, and the circulatory system.

Although knowledge and understanding did not lessen the symptoms, it provided a measure of psychological relief. The series of horrors I had experienced over the past two years had a reason and did not occur randomly. This knowledge made it possible for me to regard my body with compassion—not the enemy out to get me.

Something goes terribly wrong

My close friend, Caron, offered to drive me down to the hospital in Albuquerque to have a cerebral angiogram, a procedure that involves dye injected into the brain through a long catheter to get a better view of the extent of the damage.

Since the neurosurgeon that Dr. Soloway referred me to worked in a teaching hospital, it meant that residents in training would be involved in my care while they worked under a supervising physician. A first year anesthesia resident—just out of medical school in his starchy white coat—came to my little curtained off section of the large room and questioned me about allergies and sensitivities to medications.

As the resident took my temperature, height and weight and started an IV in my arm, I let him know that I was extremely sensitive to most pharmaceutical drugs and needed to be given a pediatric dose of the anesthesia. I asked him to tell his supervising physician not to give me the full dose of the narcotic, Fentanyl, because it would kill me by suppressing my drive to breathe.

The anesthesia resident looked skeptical. “How do you know that you’ll have that reaction?” I told him about the genetic testing I had done after being injured by toxic chemicals in the early 1990s. He asked me how the genes affected my ability to tolerate drugs. I gave him a crash course in how toxic chemicals are cleared from the body—including pharmaceutical drugs and anesthesia. I explained to him about Phase I and Phase II in the liver where most of the detoxification takes place and how I lacked certain enzymes that remove toxins. The resident looked dubious, but he took a lot of notes while I talked. He asked me for the name of the lab I used for the genetic testing.

Eventually the neurosurgeon came into the room and introduced himself. It was obvious to me that interpersonal skills were not his forte. He only made fleeting eye contact. But that was all right with me. I just wanted him to do a good job. He said that he had looked at the MRI scan I had gotten the day before in Santa Fe and that he hoped he could repair the fistulas during the catheterization procedure.

He explained that he would insert the catheter into my right femoral vein in my groin and thread it up into my brain. High dose radiation with fluoroscopy would be used during the procedure, along with iodine dye, in order to see the inside of my brain. Fluoroscopy can be compared to getting a continuous CT scan, as opposed to a static image.

I decided not to worry about the huge amount of radiation I would be receiving. There were bigger fish to fry at that moment.

The procedure lasted a little less than an hour. As the orderly wheeled me out of the surgical suite, I realized with deep disappointment that I still had the terrible pounding and pressure in my head, along with the blurry, double vision that appeared to have gotten worse.

I also noticed that there was no sand bag placed on my groin for pressure to stop the bleeding where the catheter had been inserted—as was done in the days when I did hospital-based medicine. The anesthesiologist said that no one used sand bags anymore. Clips replaced the sand bags, making the closure of the pierced veins instantaneous.

When I heard the word “clip,” a light went off in my groggy, post-anesthetic brain. “What is the clip made out of?” I asked. The anesthesiologist said that it was some kind of metal but he didn’t know which metal. I had mentioned in the intake session that it was the metal in my leg that had caused all the problems that ultimately led to the carotid cavernous fistulas. He had forgotten about that piece of information. He asked the resident to call the medical supply company and find out.

The resident came back with the news that the clip had titanium on one side and nickel on the other side. I told the resident that he needed to contact his supervising physician and let him know that I would not leave the hospital until the clip was surgically removed from the vein in my groin.

It was a long wait until the vascular surgeon could fit me into his busy schedule and remove the metal clip and then carefully sew up the incision in the femoral vein. Although the anesthesiologist said that the procedure would be under light sedation, I was completely unconscious throughout the procedure. When I woke up, I knew something terrible had happened, but I didn’t know what. I felt like I was not the same person that I was when I went in for the procedure. Something drastic had happened to me.

After the aide wheeled me back into the little curtained off enclosure, the resident came in to check on me. I asked what happened during the procedure. He said that everything went well and that I would be able to go home soon. I said that I was sure something had happened in the operating room because I was not the same person. My brain felt like it was going to explode and I felt paralyzing anxiety that I had never experienced before in my life. I felt like jumping out of my own skin. I could not bear the anxiety. I realized I was in the middle of a full blown panic attack—a new experience for me. Adrenaline and cortisol flooded my body. My heart raced out of control. I could not catch my breath.

I begged the resident to tell me what happened. He relented, “Well, um, you had a respiratory arrest and we had to resuscitate you.” I asked if I had been given the full dose of Fentanyl; he said “yes.”

The resident said, “I told my supervising physician about what you told me. He said that we had to stick to our protocol and give you the standard amount of the Fentanyl. I am very sorry.”

I was relieved to hear the truth because otherwise I would have wondered the rest of my life what had happened to me in the operating room that had such a destructive impact on my brain. I thanked him for telling me the truth, knowing that he could have gotten into trouble with his supervisors.

After the resident left, Caron, my friend with me in the hospital who was a former medical malpractice attorney, said, “I know you don’t want to hear this right now, Erica, but this is clearly a case of malpractice. But I can tell you that, were you to consider a lawsuit—which I know you won’t—you would never win because what happened will not be recorded in your chart. How do I know that? Because of my years doing medical malpractice and seeing how records were often ‘doctored’ up and important information was left out. When you’re feeling better, why don’t you request your medical records and see for yourself.” I had difficulty following what Caron said to me. It was like trying to read a book while the house was burning down around me.

A few minutes after Caron talked to me about malpractice, the neurosurgeon came in to tell me the results of the cerebral angiogram. I could tell by his face that the news would not be good. I tried to brace myself emotionally, but I was already a total wreck from the procedure that went awry.

The neurosurgeon grabbed a chair and sat down at the opposite end of the small enclosure as though he didn’t want to get too close to me. He said that the damage was so extensive in my brain that it could not be repaired. He said that I could get a second opinion, but that it wasn’t worth my time and effort because, “No surgeon will want to touch you. You have hundreds of fistulas. They are too numerous to count. You would not survive surgery.”

I asked him how I was going to live with this condition. He said that he didn’t know. He got up to leave, turned around and looked at me for a second and said, “I’m very sorry I have to give you this news.” Then he pushed the curtain aside and walked away.

My dear friend, Caron, was unable to console me. No one could help me right now. I felt completely alone in this catastrophic journey that went from bad to worse, with no way out. As she tried to comfort me, I began to cry, then sob, then wail. I was inconsolable. My whole body shook uncontrollably. Oh god, how am I going to live with this nightmare?

I staggered into the bathroom to rinse my face with cold water and get ready for the drive back to Santa Fe. The image reflected back to me in the mirror looked grotesque and shocking. A large amount of swelling ballooned out around both eyes. The left eye had deviated all the way toward the nose. It was stuck in that position. The right eye bulged out and was completely blood shot.

The diagnostic procedure itself had worsened my condition, perhaps due to my body’s reaction to the dye, or maybe from the temporary lack of oxygen in my brain while I had the respiratory arrest. I tried to pull myself together for the trip home. It was late at night. I had been in a fasting state for over 24 hours and felt shaky and trembling.

When Caron brought me to my house, I could barely walk because of the disorientation in my brain and the severe visual distortions. I had to hold onto the wall and hang onto the railing up the stairs to keep from falling down. There are no words to describe how horrible I felt. Caron brought me something to eat before she drove home. I was unable to eat and could only take small sips of water. The anxiety levels within my body were unbearable. A vise gripped my stomach.

How do I live with this condition?

The night was long. I lay awake the entire night listening to the pounding inside my head and feeling the pressure against my eyes. The adrenaline continued to surge inside of me making me too wired to fall asleep. That night marked the beginning of over a year of sleeplessness, of being wired and tired, of barely hanging on. Neither pharmaceutical nor recreational drugs were of any help. If they had helped, I would not have hesitated in becoming addicted to anything that brought relief from this unimaginable hell.

The thought of dying on the San Juan River seemed positively pleasant in retrospect. I couldn’t help but wish that I had died there. It would have been so much more merciful than having to face such immense despair and hopelessness, along with the unbearable stream of panic attacks and inability to fall asleep.

The room tilted as I slowly got out of bed the next morning and staggered to stand upright and then fell down onto the side of the bed. The room was distorted from my damaged vision; I had trouble navigating my way to the bathroom. The reflection in the mirror gave me another horrible reminder of how frightening my face had become, especially the eyes. It was also frightening to look out at the world, a veritable visual chaos.

By keeping my eyes closed, I got a tiny amount of relief from the terror of the visual distortions. I opened my eyes again and looked a little closer at the reflection in the mirror. The pupils were dilated to a degree that I’ve only seen after being artificially dilated with drops at the ophthalmologist’s office when he wants to look at the back of my eyes. The big, black pupils confirmed that my adrenaline was at extremely high levels. It was as if a switch had been flipped in my brain during the procedure at the hospital. The switch seemed to be permanently stuck in an “On” position. There was no way to pry it shut. I was stuck in a state of “fight or flight,” a permanent state of alarm which would last more than three years.

The stairs in my house had to be negotiated with great care. Already out of breath, I slowly made my way down that morning to the kitchen, one step at a time, holding the railing with both hands, much like the way two year olds deal with stairs. Once I reached the kitchen, I tripped and fell over a potted plant. Because of the double vision, it meant that the images on my retinal screen overlapped, such that some objects were canceled out. So the potted plant that was right in front of me was not there, as far as I could see.

I carefully walked to the refrigerator, shuffling my feet to avoid tripping on any unseen object, and stared inside, trying to decide what to eat. I boiled some eggs and heated up a roasted sweet potato. Tears of frustration ran down my cheeks as I kept dropping items and spilling things because I didn’t know which of the two images I was seeing was the real image. I tried to pour the hot water in the pan into the kitchen sink and ended up pouring the water onto the floor because what I thought was the sink was the false image.

As I bent over to clean up the water on the floor, I bumped the edge of the counter, lost my balance and fell down. With my eyes turned inward, I had lost my peripheral vision—one more loss I had to face.

As I sat on the floor in the spilled water, the surgeon’s words that nothing could be done for me struck me like a lifetime sentence to torture.

How could I possibly go on living in this nightmare?