So where was I? Oh yes. I had an appointment with Neuro ophthalmology for Friday morning. Obviously I went to that appointment, and I took my husband with me to be my ears and memory (Remember that part about forgetting things? One of the ways I cope is to make sure other people are with me for important moments so they can be my memory).
My Neuro ophthalmologist is a blunt man. He doesn't pad things just to spare my feelings or to make me feel better. His nurses ran their special tests and used their magic cameras to image my optic disks. After reviewing the images, my doctor confirmed the papilledema (optic nerve swelling) and said it was worse than we had thought from just looking. He agreed that since I had normal MRI's in January, that I do, indeed, have pseudotumor cerebri. He then proceeded to tell me this isn't an emergency, and that I just needed to see neurology for an LP (lumbar puncture, aka spinal tap, aka tap) within the next week or so.
Now here is where I started to disagree. I am a pediatrician. And not only am I a pediatrician, but I am an ER pediatrician. I did a pediatric residency and an emergency medicine fellowship. In both pediatrics and emergency medicine, papilledema and pseudotumor are considered emergencies. Ear infections? Colds? Rashes? Not emergencies. Risk of blindness or herniation? Definitely emergencies. Emergencies, by definition, do not mean 'wait a week or so.' Emergencies mean 'act NOW.'
So what did I do? I told my doctor that if he didn't know a neurologist who would tap me that day, then I would be leaving his office to go to the ER to get an LP that way. Did I want a spinal tap? No. Who wants a needle stuck into their spine? Did I need a spinal tap? Yes. LP's both diagnose and treat pseudotumor. The sooner they are done, the sooner CSF (cerebral spinal fluid) can be removed to relieve the intracranial pressure.
What did he do? He acknowledged my concerns and stubbornness and said he would make some phone calls. He returned a few minutes later with instructions to go directly to our local neurology clinic.
Now let me preface the rest of this story by telling you that neurology in my town stinks. I live in a city in America. I am in the developed world. Land of the Free and Home of the Brave. We have good medical care here. Except for neurology in my town. It's awful. When I was first diagnosed with MS, a neurologist here told me I had had a stroke. Now I know myself, and I had reviewed my own CTs and MRIs. I had NOT had a stroke. I had no risk factors, and I had zero signs or symptoms. What's the difference between a sign and a symptom you ask? A symptom is a subjective feeling that you tell your doctor that cannot be quantified (ex. runny nose, cough, sore throat). A sign is an objective finding that your doctor is able to see and observe (ex. a red throat with post-nasal drip, your heart rate, or your blood pressure). There was no way I had had a stroke. This is just my personal experience with our local neurology departments, but consistently, patients and doctors here agree: If you really need a GOOD neurologist, you need to go to the BMS (Best Medical School - aka the mega university hospital as referenced in the medical school classic novel House of God and immortalized forever on the TV show Scrubs) that is 4 hours away.
Continuing on...My husband drove me directly to the clinic. I had been told to 'come now' for a clinic visit and lab work, and then my LP would be done at 2:00. I arrived in the clinic and checked in. I filled out the paperwork. I turned in my driver's license and insurance information. I had a chart made. And I waited in the waiting room to be called back to see the neurologist. After about 15 minutes a nurse came out and asked if she could speak to me. Thinking she was wanting to do some triage and get some preliminary information, I agreed. She then (very nicely) proceeded to tell me that the neurologist and his partners all refused to see me as a patient. Someone, many years ago, had mistakenly written in my chart that I have von Willebrand's Disease - a platelet disease that keeps your body from properly forming clots. This would be a reason to not do an LP in a clinic setting. It would require being in the controlled setting of the hospital where blood products are available in case of uncontrollable bleeding - a relatively simple thing to do, just something that requires a little preplanning and preparation - which would be fine if I had the disease at all. I DO NOT HAVE VON WILLEBRAND'S DISEASE! I explained that this was an error in my history, and she said she would tell the doctors. Less than 5 minutes later she returned. She again told me that the doctors (yes, there were multiple neurologists involved by now refusing to see me) were not going to see me that day or any other day for an LP. To give her credit, I could tell she was not enjoying being the proverbial messenger and that she was doing her best to be nice. To quote the rest of the conversation:
Me: May I please speak directly with the neurologists and explain this error. I do not have von Willebrand's Disease.
Nurse: I'm sorry. I cannot take you back there. They are busy.
Me: Where are they? Are they here?
Nurse: They are busy seeing patients in clinic.
Me: Ummm. I am a patient, and I am standing in their clinic.
Nurse: I'm so sorry.
Me: Do they know that I'm a doctor and that I actually know what I'm talking about?
Nurse: Yes. They are fully aware that you are a Pediatric ER doctor. They still say they will not see you.
Me: So correct me if I'm wrong here. I'm a physician, standing in their clinic to be seen as a patient, and they refuse to even look me in the face to tell me they won't see me.
Nurse: That is correct.
Me: Then you can let them know that I will never refer another patient to this clinic and that I will let everyone I know what has happened today.
Nurse: I understand.
And there we have it. My fun fun Friday morning. I walked out of that clinic angrier and more scared and frustrated than I have been in years. I called my own personal neurologist at the BMS in tears and told her what was going on. She, appropriately, expressed her appalled feelings that this had happened and said she would take care of it. She called me back 15 minutes later to tell me to go to my local small, community hospital. Radiology there would do my spinal tap that afternoon. I did as instructed, and surprise surprise, I didn't have any bleeding problems and the LP was performed without complications, both confirming and treating my diagnosis of pseudotumor cerebri. Thank You, Jesus, for my neurologist and for that hospital.