We were traveling on a family vacation when I woke in the middle of the night with my left arm numb and feeling like a ton of bricks. No pain, but quite odd. I tried to rouse my husband to ask if he thought I should go to the ER but he didn’t even hear me. I went back to sleep and when I awoke I asked him again and we decided to go to the ER. I texted family who live in the area and asked where they would go if they thought there was a possibility they had had a stroke. I was in San Francisco and my family said UCSF Parnassus. Once there, the ER gave me a series of CT scans and other imaging procedures, but their 1.5 Tesla MRI machine was out of order and my brain aneurysm clip is only safe at 1.5 Tesla. I am unable to use the newer 3 Tesla machines to receive a MRI of my brain or my cervical spine. After 10 hours in the ER, I was told the symptoms I was exhibiting were consistent with a lacunar stroke, which is a type of ischemic stroke. Without the requisite MRI, they decided to treat me with this diagnosis although they could not be 100% certain that’s what it was.
They gave me a choice of being admitted, and receiving a PT and OT assessment, or going home with Rx prescriptions for baby aspirin, Plavix and Lipitor, which they directed me to take for 21 days and follow up once I returned home from my vacation. Since the OT and PT staff at the hospital only work till 5 o’clock and it was now past 5 o’clock, this was the only remaining box in there protocol for stroke diagnosis. So the vascular neurologist and stroke specialist who saw me in the ER conferred on my case and felt all things considered it was not really necessary to keep me in the hospital just to have the OT and PT do an assessment of me the following business day. Since it was our vacation and our only time to spend with our grown kids, I opted to be discharged from the ER and rejoin my family. That was Tuesday.
Wednesday I had a new symptom: profound dizziness that would not abate. Thursday morning I returned to the same ER, where I was worked up with further imaging studies – but still no MRI as their 1.5 Tesla machine was out of order and not expected to be repaired for a full year – and after 12 hours of further scanning and testing I was admitted to the neurovascular and stroke floor of the hospital. That was Friday evening, again after business hours had concluded for OT and PT staff.
Saturday and Sunday not much happened although I was seen by a team of neurovascular stroke doctors who did rounds on the stroke floor of the hospital where I was assigned and I was evaluated by both PT and OT stroke specialists who contributed their findings to my treatment plan. That day my husband was in the room with me when the doctors did rounds. I asked the lead neurovascular and stroke physician on my team, who had concluded I did indeed have a lacunar stroke, how she could be certain of the diagnosis without an MRI of my brain, which, at that point in time is considered the gold standard diagnostic tool. She responded that doctors had been diagnosing stroke in patients for many years prior to the advent of MRI machines and diagnosed my stroke based on clinical symptom presentation, and she was 100% absolutely certain I had had this type of stroke. I asked if this stroke included any type of bleeding at all and she said no.
I remained in the hospital for three days and three nights. Counting the two days I spent in their ER, I was seen by them for five days of the six-day vacation I had in San Francisco with my grown kids who live there. The entire time I was there the doctors and nurses often reminded me how fortunate I was to be at that particular location as it is one of the top–if not the #1 hospital in the country for stroke treatment. They had me on a heart monitor the entire stay and an oxygen sensor and continued running more scans and tests, but not the most important one, which of course was the MRI, since their 1.5 Tesla machine was out of order. Consequently, from my hospital bed, I worked the phones, calling every related location in the UCSF group in SF, trying my utmost to arrange the 1.5 Tesla scan I felt was essential to have the certainty of that diagnosis going forward to provide my hometown medical team with a complete set of data so that my post-discharge treatment could be as thorough as possible. In fact, there were working 1.5 Tesla machines at other locations in their medical group in SF, but they were either completely booked or designated as outpatient treatment facilities only. I was successful in having my physicians put in a stat order for both 1.5 Tesla MRIs of the brain and cervical spine.
Nevertheless, I diplomatically worked my way up the MRI scheduler hierarchy at each of their radiology locations. We were scheduled to fly back to Florida on Monday at noon. I had discovered that there was a 1.5 Tesla machine available in the building directly across the street that was part of the same complex as the UCSF Parnassus hospital where I was admitted; however, I was told that I could only be seen at that location as an outpatient–and as an outpatient, there was inadequate time for my insurance company to provide pre-authorization for the two MRI scans they had ordered – my brain and my cervical spine – – thus the only way to receive those MRI scans at that building was to first be discharged from the hospital and assume full financial responsibility for the retail cost of those MRIs, which was estimated to be over $10,000. We have excellent Blue Cross Blue Shield PPO private insurance coverage. My husband insisted that they should cover these costs and we would not agree to be financially responsible for something that insurance should cover. BCBS stated the minimum preauthorization turnaround time on an urgent order was a minimum of 72 hours, which we did not have. As a hospitalized inpatient, pre-authorizations are not required for scans, thus my determined persistence in finding a way to have my MRIs performed while still an inpatient at their hospital.
Finally, after days of my unrelenting persistence, the hospital assigned a transport nurse to accompany me from the neurovascular wing where I was an inpatient and utilized a third-party ambulance company to transport me–literally directly across the street–to receive these two MRIs just hours prior to our already rebooked delayed flights home.
As soon as the two MRIs were completed, I was returned to my hospital room expeditiously. The neurovascular and stroke doctors immediately rounded to my bedside. They had received an initial read from the radiologist, and there was absolutely no indication on my MRIs that I had experienced a recent stroke or that I had ever had a stroke at any point in my life!
To me, this was an answer to prayer, and nothing short of miraculous! Thanks be to God!
Their doctors had been absolutely positively certain I had had a lacunar stroke and had been treating me accordingly. This was the first day that the neurovascular and stroke doctor in charge of my case was off. In her place doing rounds was a more senior neurovascular stroke physician. When we asked how their assessment and diagnosis of me could change from 100% certainty of this stroke to 100% certain confirmation by MRI that no stroke had ever occurred, they didn’t really have an explanation. They certainly did not admit to making an error with their diagnosis. They told me to stop the three medications they had put me on and follow up with my brain aneurysm neurologist once home, as well as complete PT and OT to regain feeling and functionality in my left arm.
I gratefully and excitedly thanked them for their time and expertise and requested they expedite my discharge papers as we had already canceled our original flight home for that day and had booked a nighttime flight instead. They put in my discharge order and the nurses and case coordinator worked quickly to facilitate my discharge. My husband packed up my luggage where I had been staying at our family’s home, called an Uber, and we were on our way to the airport to go home. We made our Monday late night flight with no time to spare.
We arrived in Florida in the wee hours of Tuesday morning. Previously, I had scheduled an unrelated PT appointment for that day, along with my usual appointment with my pain management physician. Both professionals gave me a complete neurological workup and diagnosed me with radiculopathy from C5, the cervical vertebrae that controls feeling in that portion of my left arm that was still numb and not able to function properly. My PT said that with six weeks of PT he could have my left arm, feeling normal and functioning normally, so that is my current plan.
If any of you have experienced a stroke diagnosis, subsequent to your brain aneurysms, I would be most interested in hearing about your experience.