Monday, May 27, 2019

Chiari malformation

Claudia Martinez, 28, is a walking miracle. She's also a fourth-year medical student at the same hospital that has treated her throughout six brain surgeries.

The Brawley, Calif., native who was raised in Houston, Texas wanted to be a doctor since she was a little girl but she never could have imagined the journey it would take her on, which she now describes as  "a blessing in disguise."

Martinez received a devastating diagnosis as an undergraduate student at the University of Houston. Plagued by headaches and blackouts, Martinez was told her debilitating condition was called Chiari Malformation, which involves brain tissue extending into the spinal cord. It could cause paralysis. But despite the diagnosis, surgeries, and going in and out of hospitals, Martinez graduated with a 4.0 and got accepted into her dream medical school, the University of Texas at Houston, where she was being treated.

"My journey has been long and at times has felt impossible, but what keeps me going is my future patients," Martinez told Fox News. "I've learned we don't necessarily need a cure. We need inclusion, we need patience, we need accessibility, and we need individuals who are willing to work with us to give us the reasonable accommodations that, by law, we are entitled to."

Martinez suffered a seizure during her first year of medical school and had to undergo experimental surgery. During her third year, she suffered a stroke that left her unable to function from the neck down. She was transferred to TIRR Memorial Hermann Hospital for intense neuro-rehabilitation where she learned to walk, feed, dress, and bathe once again.

Martinez has organized the Conquer Chiari 5k Walk three times, raising over $55,000 for Chiari research, and plans to hold the fourth walk this year.

"Yes, I'm here to advocate for myself, but more importantly for those who do not yet have a voice, for those coming after me, and for my future patients," she added. "If I can set a trail to guide others so they don't have to suffer as much as I have, then it will all be worth it."

Martinez has shared her journey on Instagram, inspiring others through her honesty and fight.

                                                           From Instagram

"I thank God every day for what I’ve gone through, [because] it is how I’ve found my calling," Martinez wrote on her Instagram. "I’ve officially decided to pursue a residency in PM&R (Physical Medicine and Rehabilitation)."

She added: "I want to be on the side of medicine that most people don’t see. I want to work with a population of individuals whose worth and potential is often overlooked and be their advocate. I want to help them see that even though it may be a little different, life can be beautiful again."
But Martinez doesn't use med school or being a patient as an excuse.

She also mentors college students, especially underrepresented minorities who are interested in pursuing medicine, through programs like Aspirations in Medical Professions, SMDEP Mentorship Program, Pre-Jamp symposium, and on her own.

The 28-year-old volunteers with RSVP (Rehabilitation Services Volunteer Project), a non-profit that provides physical rehabilitation services and medical equipment to underinsured individuals in Houston with disabilities.

And if that isn't enough, Martinez is in the process of starting her own non-profit that will work to give patients adaptive medical equipment and make adjustments to their home to make them ADA compatible.

She is set to graduate in May 2020.


  1. Eight years on from her initial diagnosis, the student has had six major brain surgeries, as well as “multiple shunt surgeries, multiple feeding tube and port surgeries, as well as countless procedures and hospitalizations,” she said, writing in TMC News.

    “I thought I’d have one surgery. I knew my life would be a little different, but I thought I would have this surgery and go on to med school,” Martinez told ABC7.

    “And that would kind of be the end of my story. But it’s been quite the opposite of that.”

    In February 2017, she had a frightening “experimental” surgery which she said changed her life forever.

    Martinez had suffered a stroke during the surgery, which left her temporarily paralyzed from the neck down.

    “I couldn’t sit up on my own, move to turn in bed, walk, bathe or dress myself. All I could do was lie in bed,” she said.

    Martinez told ABC7, “I had to relearn how to do absolutely everything. My mom had to shower me, dress me.”

    “My dream of becoming a doctor felt like it was shattering before me,” she said.

    The medical student persevered through months of therapy at TIRR Memorial Hermann Rehab Hospital, where she eventually learned how to walk again using an Exoskeleton.

    Since her diagnosis, the student has also raised $55,000 to fund research for Chiari Malformation, by organizing the annual “Conquer Chiari” Walk in Houston.

    During hospital stays, she continued to strive for her dream and studied instead of taking naps and watching movies, she said.

    “God has always preserved my intelligence during my many brain surgeries, and I wasn’t going to waste that precious gift.

    “My brain, at times my greatest challenge, was my biggest ally in continuing my path to become a doctor,” Martinez said in an article for TMC News.

  2. In 2011, as an undergraduate, I was diagnosed with Chiari malformation, a condition in which a portion of the cerebellum herniates out of the bottom of the skull and compresses the brain stem, and Syringomyelia, the development of a fluid-filled cyst within the spinal cord. Since then, I’ve undergone six major brain surgeries, multiple shunt surgeries, multiple feeding tube and port surgeries, as well as countless procedures and hospitalizations. Along the way I’ve been diagnosed with hydrocephalus (a buildup of cerebrospinal fluid in the brain), trigeminal neuralgia (a chronic pain condition that affects the fifth cranial nerve), adrenal insufficiency (a condition in which the adrenal glands do not produce adequate amounts of steroid hormones), gastroparesis (partial paralysis of the stomach) and a tethered brain stem (in which the brain stem becomes pinned to the dura, or outer covering of the brain).

    On Feb. 6, 2017, my life was forever changed. I went into the operating room as one person and came out as another. Although I’m no stranger to brain surgery, this time was different. I underwent an experimental surgery to untether my brain stem, which had attached itself to the outer covering of my brain and was pulling some of the surrounding cranial nerves along with it. Because of this, my vision was compromised and I had lost nearly all muscle control in my pharynx and esophagus, making it extremely difficult to swallow. My body was deteriorating. After searching the literature, I found only a handful of patients who had undergone this surgery, and most of the cases didn’t end well. With all odds against me, I agreed to this risky operation.

    As I awoke from surgery, the doctors and I quickly realized something was wrong. Although the surgery was successful, I had suffered a stroke to my brain stem during the operation, leaving me, initially, unable to function from the neck down. I couldn’t sit up on my own, move to turn in bed, walk, bathe or dress myself. All I could do was lie in bed. My dream of becoming a doctor felt like it was shattering before me, once again, but I’ve never allowed my health to keep me from continuing my journey and I wasn’t going to let it start now.

    After a few weeks, I was transferred to TIRR Memorial Hermann to undergo intense inpatient neurorehabilitation. Each day was filled with physical, speech and occupational therapy, among other activities. Every simple thing we do and take for granted in everyday life I had to relearn. Absolutely everything. When asked what my goal was, I always said, “I just want to be able to take care of patients and go back to school to become a doctor.”

    I spent many months at TIRR Memorial Hermann, first working on gaining the strength to sit up unassisted and then slowly advancing to standing on my own. The REX robotic exoskeleton was one of the devices that helped teach me how to walk again. The days were hard, long and, at times, frustrating, but every sensation and movement gained was rewarding.

    As a medical student, I still had tests to study for and assignments to complete. Initially, I couldn’t operate my computer, write or even turn the pages in a book. When I could finally see clearly and listen, my mother placed ear buds in my ears and played lectures for me to watch. She typed my essays as I called out my thoughts, turned the pages in my books and wrote my notes. We started studying early—before my doctors came in to round and the long days of therapy began—or stayed up late after exhausting days. It was extremely difficult, but I was determined. (continued)

  3. (continued) Many people couldn’t understand why I never wanted to take a break from school. While in the hospital, I didn’t watch movies or take naps. I studied. God has always preserved my intelligence during my many brain surgeries, and I wasn’t going to waste that precious gift. My brain, at times my greatest challenge, was my biggest ally in continuing my path to become a doctor...

    I always hoped for the day I’d be cured, when I’d no longer be the patient, only the doctor, because for so long I was made to believe the two could not exist at the same time. You are one or the other—the patient or the doctor.

    I am now starting my third year at McGovern Medical School. As I sit here in the hospital waiting to see the next patient, wearing a white coat and a stethoscope around my neck, I, too, look like a patient. I carry a heavy backpack containing liters of IV fluids, nutritional feedings and a feeding tube pump, heparin and saline flushes, syringes, dressings, caps and sterile swabs.

    A tube from my port that goes into my heart and a feeding tube that goes into my small intestine tethers me to this backpack. My gait is abnormal and my hand function is quite limited. But as I contemplate my situation, there is a part of me that hopes I am never cured. Perhaps I am not meant to be a “normal” doctor, but a voice to bridge the gap of those who are solely doctors and those who are solely patients.

    Over the years, some doctors, professors and advisors told me to quit medical school. They said, “Your medical history is too extensive,” and “You don’t have the functioning you need,” and “It is impossible for you to continue school while being a patient in the hospital so much.” Some said, “If you do continue, you need to hide the deficits and illnesses you have.”

    I remember one neurologist walked into my hospital room and asked everyone to leave. She sat down at the foot of my bed and looked me straight in the eye and said, “Claudia, you have to give it up, you can’t be a doctor.” After telling her I disagreed, she told me, “Look at where they are and look at where you are.” (“They” referred to my classmates who were rounding with her on my case.) “Lift up your legs!” she yelled. “Lift up your legs!” At the time I couldn’t move my legs. “See, you can’t even lift up your own legs. You can’t even take care of yourself. How can you take care of a patient?”

    All these years, I wish I had known someone fighting a serious illness while also trying to get through college and medical school—someone to look up to, to show me that it is possible. I’ve been sharing my story on social media for six years in the hopes of finding others like me. And I’ve found that just because people like me are underrepresented doesn’t mean that there aren’t a few of us out there. They, too, were told to hide.

    You may see a young woman who has overcome adversity with resilience, time and time again, but I hope you also see a woman who is only human, a woman with a disability and medical history neither she nor her doctors can change, a woman who is good enough to become a doctor, despite everything.

    I’m here to represent and bring light to those in the medical profession who have a disability, who battle health issues, who have been underrepresented for far too long. As health care providers, we’re not immune to illness. We should embrace individuals on both sides of medicine because they bring unique perspectives to the field and serve as a bridge between doctors and patients.

    To those, like myself, who find themselves on both sides of medicine, remember this: They say there is light at the end of the tunnel, but I’ve learned there may never be a true “end” to a medical condition, that the light may stay beyond our reach. But, perhaps, this is when we should create light for ourselves, to encourage others to see us just as we are, to show how we can shine despite the darkness.

  4. An aspiring doctor, Claudia’s life changed in 2011, over 6 years ago. In the second year of her semester, what started out as a small headache, slowly transitioned into dizziness and numb feelings around her body. After falling due to no feelings in her legs, Claudia scheduled in a hospital visit. Following a scan of her brain, she was immediately sent to a neurosurgeon, who immediately scheduled brain surgery.

    Claudia suffered from a form of Chiari I, whereby her brain would herniate from the skull due to it being too large for its surrounding.

    “I remember being sat in the hospital, and the doctor came in to tell me the news. All I could think is, being a pre-med student, ‘how am I going to continue School?’”

    Claudia’s surgery was scheduled for the first day of the semester.

    “I asked the doctor, can we please postpone the surgery? I have school that day.”

    The doctor’s response was simple and sharp. “Look, Claudia, it’s your choice, you can either postpone the surgery, or risk being paralyzed from the neck down, forever.”

    Claudia’s surgery was set, and by all standard, she recovered well. Although it wasn’t long before symptoms started coming back around. Within 2 months, Claudia was feeling ill again. Headaches, dizziness, and blackouts were becoming the norm. After visits to the hospital weren’t showing anything wrong, a final fall put Claudia back under a brain scan, revealing a fluid leak in the brain, which is usually extremely rare. After under going another surgery, the leak was repaired, and Claudia was sent on her way.

    From here, Claudia started to feel some normalcy, living her life the way most of us do. Until a year later when symptoms started to return. The brain had herniated again and was rejecting the material that was placed in the previous operations to keep everything in place. Unfortunately, this procedure didn’t turn out well. Claudia contracted meningitis from the third operation and resulted in a shunt being placed in the brain.

    So where does Claudia go next, and what does 2018 have in store for her?

    “I’m not here to be cured,” says Claudia.

    “I’m here to be well enough to take care of patients in the future. Over the years, I’ve seen the value of being the patient, I’m used to studying 18 hours a day, always wanting a perfect score. No studying can show you what a patient goes through, I see it as a privilege, understanding what the families are going through. I bring something different, something first hand to my peers, to help my peers understand what patients are going through. I can be the voice, the advantage. I tell people, I want to be someone’s sign of hope. I was told that my patients wouldn’t want me to be their physician. I was told, ‘don’t be a doctor’ but being the hope is what keeps me going.”

    Claudia is 27 and graduates in May 2020.

    “An illness doesn’t have to be the end of your life. It can be the beginning. We all have two lives, and the second starts when you realize you only have one…

    I’m so thankful for everything I’ve gone through.”

  5. Query:

    Thoughts? See


    Interesting essay that I had not read before. It is quite a good human interest story, for sure. You find yourself pulling for her to succeed. But I also kept having a nagging sense that there is more to her illness than they have yet to diagnose.

    It is likely true that a major chronic illness like this would give one a new level of empathy.

    Now: what were YOUR thoughts?

    My reply:

    “But I also kept having a nagging sense that there is more to her illness than they have yet to diagnose.” I would certainly agree with that. This doesn’t behave like any Chiari malformation I have encountered. Quadriplegia, gastroparesis, a port and gastrostomy?
    One neurosurgeon colleague said:

    Pretty melodramatic

    I suspect she had some not so good surgeons along the way and u end up w blurring between some functional stuff and actual iatrogenic injury

    Would be interesting to know if she ever needed surgery to begin with

    Sad story

    Another less charitable neurosurgery colleague said:

    Complicated story

    Reminds me of the cheerleader who could only walk backwards after a vaccination due to dystonia.

    I also believe that was in Texas.

    I think I found the common denominator.

    A neurology colleague said:

    I think I hear the kookaburra singing in the old gum tree. Then again, somatoform disorders seem to have organic underpinnings.

    Correspondent’s reply:

    Some crazy people here, for sure.

    It is a scientific fact that Chiari lesions are indeed more common here in Texas….. (wait for it)…. Evidently because more people here have vertebra than in many of the eastern states. 😊