sun.jpg

My Brain Tumor

I am a healthy, active person, but in 2016, I began to experience abnormal headaches. I have migraines about once a year and can manage them naturally, but over the course of six months, I experienced 15 migraines. As a neurologist, I knew that these were atypical headaches. Although I was feeling fine and maintained my usual level of activity, the headaches progressed in severity and frequency until I could no longer ignore my body’s message.

After a few frustrating mishaps in the medical world that delayed a useful diagnostic workup, a doctor finally ordered my brain MRI. After the study, I was instructed to head to the ER without further information despite repeatedly asking for answers. In the ER, no one knew why I was there, but they placed me in an exam room where I waited for 30 minutes.

Finally, an ER physician came in and opened his laptop displaying my MRI results. As a neurologist I review scans every day, and I immediately noticed the immense swelling. My first thought? It’s a terminal diagnosis. Fortunately, as my husband and I scrolled through the images of the scan, it revealed a very large and circumscribed tumor arising from the lining of the brain that was pushing down on my left hemisphere. This created a swelling and mass effect, which means my brain was being pulled to the right side. It was a wonder to all in the room that I had not experienced any seizures or neurologic deficits. But my life changed in that moment.

Two days later, I was admitted for a cerebral angiogram, a test that injects dye into the vessels of my brain so the tumor can be identified. The problem vessel was the middle meningeal artery, which had to be embolized to minimize the bleeding during neurosurgery planned for the next day. The five-hour-long surgery required a complete craniotomy, which places a cut over the top of the head from ear to ear. Since the tumor had collapsed the front portion of my sagittal sinus, one of the sinuses in the brain that collects and drains blood and attached to my left frontal lobe, it required extra care to remove. Fortunately, the surgery was deemed a gross total resection and a success.

Pathology revealed an overall benign pattern, but chromosomal testing revealed risk factors for recurrence, which classified my tumor as an atypical meningioma, versus a typical one and was graded as II/III. Since this brings a slightly higher chance of recurrence, I will be scanned every six months for the next three years.

I was in the hospital for four days, and it was no walk in the park! During that time, I encountered poor communication, inaccurate reports, erroneous knowledge, and overall lack of cohesive care. While some hospital personnel were wonderful and competent, there were many mistakes along my journey. Fortunately, I was able to identify and correct these mistakes because I am a physician, but I often wondered about how non-physicians navigate our healthcare system.

A year and a half later, I had recurrence of tumor and had to undergo radiation. Follow up scans since that time show persistent tumor and recently some likely new, but slow, growth as well as radiation after effects. But I continue to function at high levels and have energy as I did when I was a much younger physician. I practice what I preach and feel strongly about the potential to harness natural healing power – with a little bit of help.

In retrospect, I am certain this experience makes me a better physician, as I realized a patient knows their body better than I do. I start from a place of trust and belief.

 

You may also like

5 comments

  • Carlo Sneath May 31, 2019   Reply →

    It’s been a long time since I’ve been to Seattle. Can you believe the snow Seattle got a couple weeks ago?! It’s nothing like the snow we have back home but I guess it really shut down the area. I hope you all are staying warm 🙂

  • Chauncey Bell September 8, 2019   Reply →

    Thank you for spelling out your experience.

    I had a stroke a few months ago and wrote up the experience (parallelling yours) in a long letter to the hospital, and after several months and several followup calls am still waiting for any reply from the hospital or the neurological staff.

    For recovery my principal physician is a Chinese medicine practitioner, after reviewing the paths suggested by nearly a dozen allopaths, a couple of naturopaths, and other specialists. Of course I am also in regular conversations with my primary care physician, a very senior cardiologist, and a close personal friend who watches the progress of allopathic medicine, along with two Rolfers and a very unusual pair of dentists.

    I have scheduled an appointment with you. (Your waiting list is brutally long.) Through personal experience through my own migraine headaches and my wife’s Crohn’s disease through decades of experience with allopathic medicine, I am not surprised by any part of my recent experiences, but also think that it is possible that your experiences could become a foundation for more than a single practice, however rich it may be. What I call “the blind spots” in the spectacular tradition we call allopathic medicine are spectacularly large and also largely invisible to the population in the US.

    Again, thank you.

  • Christopher Zarebski September 11, 2019   Reply →

    I was excited to uncover this website. I want to to thank you for your time due to this fantastic read!! I definitely really liked every little bit of it and i also have you book-marked to check out new information on your site.

  • Alva Dugal May 28, 2020   Reply →

    It’s a pity you don’t have a donate button! I’d most certainly donate to this superb blog! I suppose for now i’ll settle for bookmarking and adding your RSS feed to my Google account. I look forward to brand new updates and will share this website with my Facebook group. Chat soon!

  • Claudia Bressie October 9, 2020   Reply →

    I can absolutely relate to your article! Although I am not a trained physician, I had to act as one for myself from an advocacy perspective. I had fainting spells, vertigo and head aches. I knew something was not right. I was misdiagnosed out of the gate with 2 tumors. One at skull base and the other in deep lobe parotid. It took a year of seeing other Dr’s to finally get the correct diagnosis of TGCT Diffuse. From here, it was the quest for the best outcome for me with surgery. After going to UCSF, Stanford & MD Anderson, I chose UAMS in Little Rock, Arkansas! My gut instinct was correct, my tumor was much more serious than anyone knew until meeting with UAMS Dr’s. My Tumor originated in the TMJ space and grew both down into Parotid and up through my skull base and started in on my brain!! I would love to help advocate for others in some capacity as this is a scary and difficult journey. You feel very alone! If you have any suggestions for me, I’m all ears.
    I’m not out of the woods yet. My tumor hadn’t returned at my 1yr mark but I fear something is brewing. I’ll have an idea with my upcoming follow up MRI. We just have to stay positive! Thank you!

Leave a comment