You know…. like instead of “backstory”? ha ha.
My stressful week of appointments did not happen the way I thought it would. My insurance, Medical Mutual through John’s employment, kicked in on January 1 and so I had a lot of things scheduled right away, and they ended up being all in a row on Jan 23, 24, and 25. First of all on Monday, the day before my pain management appointment with Dr. Mitzi, I got a call that she was ill and unable to keep her Tuesday appointments. The message said that her husband, also a pain management doctor, would be filling all our prescriptions and we could pick them up at a hospital in Toledo. John said it’s not in a great neighborhood and to be careful, and all the nurse had said was “St. Charles Hospital, Mezzanine level.” I had to ask many people in many buildings before finding the office, and everyone was great and helpful. I giggled to think that it was almost like I was trying to find those meds on the street. “Your normal contact is tied up, go see this dude at this sketchy place…” The next day I learned that due to new rules Medical Mutual has adopted, maybe because of Ohio’s new rules or just because of all the other opioid “epidemic” stuff, only a week at a time would be covered without a prior authorization. The pharmacy made it clear I could pay out of pocket (like I had been the whole last year) so I did. Later that day, Dr. Mitzi’s nurse called about the prior auth, and I was incredibly impressed. They are definitely prepared there for the changes and on top of them. I told her I’d paid out of pocket, and she said they would take care of it next month in that case.
Mom came with me to my appointment with Dr. C, my new primary care physician, because it had gone so badly last time (see Migraine.com article here). This appointment went really, really well. He covered all the bases. Ordered new x-rays for my ankle (sprained because of my weak leg / foot); ordered a new thyroid test; referred me to a GI specialist to determine exactly what I did to myself with NSAIDs for all those years; ordered a mammogram (I’m ignoring the scheduling of that until next week); said we’d keep an eye on my high blood pressure. When mom and I left I was very happy.
But my appointment with Dr. Mahmood was the opposite. Mom said she wished she’d come with me to that too, but it wouldn’t have mattered. They used a shitty blood pressure monitor that velcros to your wrist and said my heart rate and blood pressure were dangerously high. So high the receptionist, who a week later delivered the scary news to me, did not want to let me leave. She told me I should monitor my BP at home. The nurse helpfully pointed out that they had ordered their monitor for $50 from Amazon.com. That may tell you all you need to know, right there, about that practice. That and the fact that the receptionist was forced to tell me there was a possible aneurysm on my MRI.
Dr. Mahmood told me he wanted me to get the erenumab from “the Michigan place” where I had my study. I couldn’t believe it. This neurologist literally did not understand how clinical trials work, that I am not a patient there, just a number. This was horrible, horrible information to have to understand, that he actually would be able to help me so little that he may not even bother trying to prescribe the new medication when it was released. I tried to explain this to him. It was like he stopped listening. I had run out of Imitrex refills and he confirmed that I am no longer allowed to take it. He offered nothing as a replacement. There are several options he could have mentioned if he cared one fucking iota. On and off prednisone treatment. Midrin. Fioricet, not the best option, but an alternative. He was leaving me with nothing except the Percocet and Klonopin I get from pain management, which THANK GOD I HAVE. I’m an advocate for pain patients, migraine patients, being allowed access to opioids but everyone knows that should not be my ONLY FUCKING OPTION. He actually was getting up to leave. Frantically I said, “Wait! WAIT. I need the MRI Dr. Saper recommended.” He sighed. “Okay fine let’s just double check that nothing is wrong.” He went to leave again and again I told him to wait. “I want something for the high blood pressure that will also work for migraine prevention. I want to establish to the insurance company that I’m re-trying preventatives so they’ll be more likely to…” Fine, he said, fine. I said “Timolol please, I don’t remember trying that one and it’s supposed to be…” Lisinopril, he said, ignoring me, and I couldn’t understand the name of the med he said due to his accent but at that point I gave up. “Fine.”
I scheduled my MRI with that receptionist. It was to be the following week. They wanted to get blood work in preparation for the MRI and I went down to the lab and started sobbing, not entirely sure why other than just the knowledge that Dr. Mahmood had finally shown himself to be utterly and completely incompetent. I had always kind of known that, after all, he once gave me Haldol in the hospital when I was pregnant. But I’d needed a neurologist desperately and fast and really in name only. Many headache specialists have a no opioid policy and it was important to me to be able to keep them, and I assumed correctly that he wouldn’t care enough to argue with me about that. That policy is wrong. Unfortunately it is going to continue to be a problem for me as I work through all this and find a new neurologist, because clearly I have to. I am truly no longer allowed to take Imitrex, which is mind boggling to me, so I hope that might help. Actually having an aneurysm might help too.
Still crying, I went into the bathroom and texted my mom. She said that if my BP was that high I should take something for it right away. I wanted to stay at the hospital for some reason. My head started to pound. I managed to calm down but I definitely felt wrong and scared and like I needed help. I saw my friend Veronica who works at the hospital coming out of the lab office and she gave me a hug. She knows me well and everything about my situation. I got some blood taken. I drove home and told my mom I was going to bed. My head got worse and I ended up going back to the hospital, where for the first time in ten years I was denied the only medication that works when I get to that point. It was horrible. I did get fluids and decadron and Tylenol.
I was very upset about this, but handled it better than the last time it happened. I am getting stronger. I am made of tougher stuff than I used to be. At home, I used the last 100 mg Imitrex, my last phenergan suppository which for some reason Dr. M seems to also be refusing to refill, but just wait. He won’t get away with that. I just checked my pharamcy app and yep, no refill. They will be hearing from me. It took me a very long time to treat that migraine at home and of course I was even more furious when that MRI showed something bulbous on my basilar artery. I thought that would make a difference the next time, but when I panicked after reading info in the middle of the night and went back for help, it didn’t.
My mom took me to the MRI appointment. I put on the gown. I lay on the table. I let them play the Beatles for me. They injected the contrast. The machine was so much louder than I remembered. Then it was over. But it wasn’t over at all.
At 9:15 am my phone rang. I don’t know if there was a school delay that morning, or if I’d just crashed back out after taking Zo to school, but I didn’t answer. I never do. But something told me to check that voicemail immediately. I let my phone transcribe it and read “_____ from Radiology, calling to schedule an MRA test as soon as possible on doctor’s orders, please call us as soon as possible at _______.” Well, shit. that just seemed bad. I called back immediately and stammered about returning a call, and having no clue what was going on and not being told (“Your doctor just wants to schedule another test,”) I said late morning was best instead of GET ME IN THERE AS SOON AS YOU POSSIBLY CAN. It was scheduled for Wednesday the 7th at noon. No special preparation needed.
I was flummoxed. “Being extra thorough?” my mom texted. No way, I thought, Dr. Mahmood is the most UNTHOROUGH doctor I’ve had in my whole life. No way. I had a bad feeling. And I sat with that bad feeling… sort of went about my day, sort of put it out of my mind, but with creeping anxiety. No one seemed to think I had anything to worry about. I tried to believe them. I just knew Dr. Mahmood wouldn’t just order a follow up, different sort of MRI “just to be sure.” I think at some point, though I avoided looking at the internet, I learned that an MRA looks closely at veins.
At 4:37 my phone alarmed its “old fashioned phone” ring that I have set for doctors. The screen flashed “Dr. Mahmood” and I could feel my heart speeding up as everything else started to slow down. My breathing went shallow.
“What.” John said with dread as the girls giggled and chatted and sang, totally unaware. “What is it.”
“This is it.” I grabbed the phone and swiped. “This is elizabeth.” I hated how shaky my voice already sounded. But yet, I was processing. Almost 4:40 pm? When radiology at called at 9:15?
False cheer and bravado. “Hello, Elizabeth? This is Robin, calling from Dr. Mahmood’s office.”
“Well now the doctor would like you to schedule another–”
“Yeah I got that. They called this morning.”
“Oh!” Surprise, someone was responsible. “Well, so, you already–”
“Yeah. I did. Next Wednesday.”
“Okay, well good, so–” relief and eager to get off the phone. I could not fucking believe it. I also furious that they obviously sat on this uncomfortable task ALL. DAY. LONG.
“Why do I need this other test.” Firm.
A beat. Clearing of the throat. “Well. Based on– on the – the results. Doctor just wants–” I HATE how receptionists and nurses do that with the physicians they work for. They can’t call them by their first names so they make ‘Doctor’ the super special first name only they call them.
“WHAT WERE THE RESULTS.”
“Well, now. Ah.” More throat clearing. Despite my terror and rage I actually felt sorry for her. I was starting to be aware of the position she was in. It wasn’t a good one. But I needed to know. “Please – um, please hold a moment.” I looked at John. I can’t imagine what my face must have looked like, but I saw his.
“There was something on the MRI,” I whispered, pacing, tearing my hand through my hair. My heart was pounding so hard I could hear it, and I felt that rising panic you can feel almost to your ears.
She came back, her voice firmer but somehow also more tentative? That doesn’t sound possible, but that was what I sensed. “I shouldn’t be the one telling you this.”
“Just tell me.”
She sighed and I knew that she knew if she didn’t tell me, no one would. I felt such anger at Dr. Mahmood it almost overtook my fear. Almost.
“You – you really shouldn’t have to hear this over the phone.” Deep sigh. “I have it here, okay… ” She started mumbling the first part of the report, much of which she couldn’t pronounce. “No intra…cranial hemorrhage or mass. Normal size ventricles. No significant atrophy. No abnormal signal within the paren.. parenchy…” clearing of throat. “to suggest infraction [it’s INFARCTION] or demy… elination. No evidence of… let’s see here… No evidence of acute… um, diffusion weighted imaging. Tip of…” Silence. “I shouldn’t be telling you this. Doctor should be telling you this.”
Silence on my end. Anger was keeping back the tears. John was pacing and trying to distract the girls, his face ghostly.
“They um — it says that one of your veins is a little — just a little enlarged [NOT WHAT IT SAYS]. Um. Angiogram recommended to exclude aneurysm.”
And there it was. “AN ANEURYSM? Like – like the kind that burst?!!” I think that was when John’s tears started, which he fought on and off with varying success for four days. Somehow the girls weren’t picking up on any of this.
Stupid Robin. And I mean, literally. Stupid. “Now now now don’t get excited. It says “possible small aneurysm [true]. POSSIBLE. You really don’t want to get excited, it might not be anything.”
I don’t really remember how I ended that conversation.
What happened after that is detailed in sections in the previous entries. I ended up telling the girls myself on Friday. We never, ever lie to them and though we’d considered waiting for the results of the second test I knew that wouldn’t work. They are too perceptive, too in tune with our moods, and we were going to need to be able to talk about it. My friend Stacey had recommended me getting the report, which I did, and what it actually said was “Tip of the basilar artery is somewhat bulbous.” That is what Robin didn’t want to tell me, and the certainty of the language caught me off guard. My getting the report is the only way I knew that detail. We had a great, tearful and joyful family conversation where X completely impressed me with her maturity as she tried to help Zo understand not to be scared, and I emphasized that no matter what, I would still have migraine disease, and that was when she brought tears of pride to my eyes by saying, “Right. Because there is no cure for migraine.” We went to see Newsies and I had a wonderful, wonderful night. I went to the ER once, cried a lot, wrote a lot, contacted a lot of people, tried to help my husband stay sane. Saturday our house was filled with friends. Sunday it was filled with sadness and trepidation. We’ve been managing. We’ve been living. Because that’s what we do.
And now it’s time for me to get ready for the MRA, which is in one hour.