a stroke of luck

I am not sure where to begin my story.  Should it start when I was hospitalized for heart failure at age 32?  Or maybe when my dad passed away from ALS?  Perhaps when I passed out the day my divorce was finalized?  No…I will begin the day I had four mini-strokes.

Saturday, May 7, 2021 was no ordinary day.  It was the day I called out, “Call 911!”  In retrospect, I had been especially stressed at work that week and was “on edge”, suffering from horrible headaches that I dismissed as stress-related tension.  But, I never expected to recognize the symptoms of a stroke that I had learned years before working for the American Heart Association.  

I picked up pizza for dinner at my daughter’s babysitter’s house.   Sitting by a fire while watching the kids play, I realized what was happening when I went to touch my numb lip with my right hand, my arm was moving around like a marionette - without me controlling it.  I spoke.  In my mind, I said, “I’m having a stroke.”  But, in reality, what I said was not understandable.  When I said, “Call 911!” the words were still unrecognizable.  Luckily, my friend figured out from my tone and panic in my eyes what was happening and she quickly called for help.

When I arrived at Crouse Hospital, I was given a series of tests - finger-squeezing, repeating simple phrases, and a CAT scan of my brain. The tests confirmed a series of four mini-strokes.  The test results showed no hemorrhagic stroke - thankfully, there was no bleeding in my brain.  A doctor also explained that the brain scan showed another brain condition, but that would be explained later.  The next step was to minimize the effects of the ischemic stroke - blood clots were blocking blood flow to parts of my brain.  I was given tPA - a drug that breaks up/dissolves blood clots - within one hour of the symptoms starting.  At this point, my only deficit was trouble speaking.   Thankfully, this only continued for a day or so.

What caused a clot to travel to my brain?  Because the clots were on the left side of my brain, it was determined that the strokes were caused by atrial fibrillation (AFib).  I was diagnosed with this condition on November 24, 2020 when I passed out at a friend’s house and was transported by ambulance to Crouse Hospital.  During the November hospital stay, a loop recorder (a heart monitor implanted below the skin) was implanted to learn more about my AFib, but the recording showed no occurrences that would warrant immediate concern or treatment.  But…my cardiologists determined (probably) the AFib caused a clot to form in the left atrial appendage and on that particular moment on May 7, the clot left my heart and traveled to my brain.  

The explanation of the stroke was complicated by the other condition discovered on the brain scan.  A physician’s assistant from neurology explained that the scan showed MoyaMoya disease - a degenerative brain disorder where the blood vessels that feed the brain with blood narrow.  This blockage is caused by the thickening of the walls of the interior carotid artery.  In order to circulate enough blood, bundles of capillaries form, creating a smoke-like appearance on brain scans. (MoyaMoya means ‘puff of smoke” in Japanese.)  

In my case, this occlusion reduces the flow of blood to the RIGHT side of my brain (thus affecting the LEFT side of my body).  With this information, doctors were able to conclude that the stroke was not caused by this condition, but rather the AFib, since my strokes occurred in the LEFT hemisphere of my brain (my RIGHT arm was uncontrollable).

Treatment was complicated because of my history of heart problems.  AFib is typically treated with blood thinners or anticoagulants to prevent additional clots from forming, however, in MoyaMoya patients, blood thinners increase the chances for hemorrhagic strokes (brain bleed).  After many conversations, it was decided that I would take anticoagulants until heart surgery when a device called a Watchman would be inserted into the left atrial appendage, preventing any future clots from forming in this space.  Watchman surgery took place on July 28.  Forty-five days later, I was able to stop taking anticoagulants, but prescribed baby aspirin for life.

After adjusting my heart and blood pressure medications and finding limited change in my heart function, my cardiologist recommended a defibrillator.  I had the one-day surgery on November 15, 2021.  This implant sits between the layers of skin above my heart and a tiny lead inside my atria monitors heart rhythm.  The defibrillator will administer a life-saving shock if my heart begins a dangerous arrhythmia (an abnormal rate or rhythm).  This will not improve the dysfunction in my heart, but it will save my life if necessary. 

At this point in my story, I must introduce my struggles with insurance.  When I had my strokes, I was employed as a Development Associate for a local non-profit organization and had employer-provided insurance.  After exhausting my 3 month FMLA leave, I was informed that I was out of leave and would be released from employment.  Beginning September 1, 2021, I qualified for Medicaid.  

Rewind to June 2021, when I was seen by a neurosurgeon at Crouse Hospital who informed me that we would “wait and see” what developed with my MoyaMoya.  This is not encouraging for any patient with a degenerative condition.  Further, I was never contacted by the office for a follow up appointment.  So, I sought out a second opinion from a MoyaMoya specialist.    

I joined every online support group for MoyaMoya to learn about the condition and its treatment, but also to find a specialist.  I soon discovered Dr. Gary Steinberg, Director of the Stanford MoyaMoya Center was the leading neurosurgeon for this rare condition.  

MoyaMoya  is a very rare disease, affecting  0.086 people per 100,000.  There are not many doctors familiar with the disease and few neurosurgeons who have experience with the specific re-vascularization techniques required for positive outcomes.  I decided I wanted Dr. Steinberg, the surgeon with over 2000 of these surgeries under his belt, to manage my care.  But, my Medicaid plan administered by Excellus, decided otherwise.

After my case was reviewed by Dr. Steinberg in August 2021, I coordinated the referral to Excellus.  My primary care physician was supportive of this referral and completed a peer-to-peer conference with the medical adviser at Excellus to argue for my case.  I was denied the ability to see the doctor of my choice.  Instead, I was referred to Dr. David Langer, Chair of Neurosurgery at Lenox Hill Hospital and the Moyamoya Center of Neuroscience Institute.

I met with Dr. Langer via Zoom on October 28, 2021.  He confirmed the MoyaMoya diagnosis, but ordered more brain scans to provide a better understanding of my current condition.  By this point, my defibrillator surgery had been scheduled and I would need to wait 6 weeks following the surgery to be able to have the MRA and NOVA tests done.  (A reliable heart was paramount before considering brain surgery.)  The trip to NYC and the scans were scheduled for Dec 27-28 at Lenox Hill.

Concurrently, on November 11, 2021, I received notice that my 10/28 visit with Dr. Langer was NOT covered because he was not a participating provider in my plan.  I patiently explained that there must be some misunderstanding because I was told by Excellus to see Dr. Langer.  After two months, I am still experiencing problems with this referral.

The week of Christmas, I decided to reach out to the departments at Lenox Hill to confirm my appointments since I had received no confirmations.  After getting the Radiology department at Lenox Hill the specs of my defibrillator, I thought I was all clear.  I had the prior authorizations in hand from my insurance company and all of the babysitting, transportation, housing logistics for this two-day  trip were confirmed.   Then, it was discovered that the prior authorization expired the day before my tests!  Thankfully, the Wednesday before Christmas, the insurance authorizations were extended.  Then… Thursday morning I received a call from the Financial Department at Lenox Hill Hospital.  She explained that Dr. Langer was not “in network” and that the cost of the scans would be 100% my responsibility.   That was it!  I had this circular conversation too many times so, I cancelled the appointments and enjoyed my Christmas with family - setting aside frustration after frustration with insurance.  I decided my health needed a break from managing my healthcare.  

As I am writing this, I wait for a call from my Case Manager at Excellus - a nurse advocate assigned to me because of my mountain of insurance claims and complexity of my conditions. 

I need to have scans of my brain to determine the extent of the occlusion in my right internal carotid artery.  Apparently, the equipment for these tests is not available in my area.  At Lenox Hill, a brain MRI is approximately $1,050-$2300.  Following these tests, a neurosurgeon can tell me the next step - 'wait and see' or brain surgery.  Eventually, I will need a direct/indirect revascularization of my right internal carotid artery since there is no other treatment for this condition.  The out-of-pocket cost of this surgery is estimated at $100,000.  

I am overwhelmed by uncertainty of how to move forward with managing chronic illnesses, with earning an income to support myself and my 8 year old daughter, and how to get my insurance company to work WITH me on managing my health.  I am not sure what can be done.  

I wait - meditating on patience.

(UPDATE: I had surgery on April 13, 2022.  Stay tuned for the full story.)