Hi everyone. I'm new here. Thanks for providing such a wonderful forum. I realize that all medical advice has to come from my doctor, but I'm curious to see if anyone has had an experience like mine.
Three weeks ago, I was shopping and experienced a sudden and severe headache that began at my right temple and quickly spread over the top of the right side of my head and behind my right eye, accompanied by neck stiffness. I felt weak and nauseous and later vomited at the ER. The ER finally did a CT and a CT-A scan about six hours after the onset of my attack. Both came back negative. The ER doc then did a spinal tap, which revealed blood. She told me she "let it flow" for a while and then distributed it among several vials to determine whether or not it was a traumatic tap. She felt it was not a traumatic tap, but said she wasn't sure and referred me to a larger hospital to see a specialist there.
I arrived at Larger Hospital later that night and was admitted for observation pending an MRI-MRA. The resident I saw for all of five minutes said that since they couldn't prove my spinal tap wasn't a traumatic tap, they would treat it as inconclusive. They did not repeat the procedure. I was supposed to have the MRI-MRA first thing in the morning, but they were pushed back so that they weren't done until about 30 hours after my initial onset of symptoms. A nurse-practitioner later advised me that they found no abnormalities in my scans and I was discharged. I asked about my original attack and what had caused it and the NP was basically like, "Beats us. Consult a neurologist."
(I was then lucky enough to develop the debilitating headaches from the spinal tap procedure and a week later had a very painful blood patch procedure done. It was so painful that the doctor could only inject half the blood and I am still experiencing minor postural headaches and neck pain.)
I made an appointment with a neurologist and began to do my own research. I learned that CT scans are often negative for people who are anemic because any blood on the brain shows as isodense, or the same density as their brain, which often results in false-negatives. I have been chronically anemic for the past 18 years and at a previously scheduled doctor's just days after my attack, my doctor ordered a complete blood count which confirmed I was very anemic and she ordered me iron supplements in the strength of 325mg a day.
I also read a journal article called "The minor leak preceding subarachnoid hemorrhage" which found that people in the study who had a minor leak before a full-fledged rupture often had negative CT scans, but their lumbar punctures were all positive. The study also states that those people who have SAHs who had a warning leak beforehand face a higher mortality than people who have SAHs who didn't have a warning leak. Other studies I read stated that a vessel could leak and then immediately seal itself, leaving me to wonder if a minor leak would then be picked up on subsequent scans.
I saw a neurologist on Wednesday and he was very dismissive at first. He even walked out of the room mid-sentence as I was trying to concisely relay my experience. Then, after looking at the report for my lumbar puncture, his tune changed and he mumbled something about how I had elevated white blood cells and some other stuff I didn't catch and said that he didn't think it was a traumatic tap at all and that he felt I had experienced a "minor leak." He referred me to a local neurosurgeon who he said specializes in SAHs. I spoke to a clerk in their office yesterday and provided all my info and they said they would contact me to make an appointment after the doctor had the chance to view my scans and evaluate them.
I'm 38 and apart from hypothyroidism and anemia, am relatively healthy. I do not have a history of headaches beyond the occasional sinus infection-headache or tension headache from staring at my PC too long at work. This experience was so out of the normal for me and so severe (I was literally sobbing in pain) that I can't believe it would be entirely benign. My husband tells me that if the doctors we worried, they would act faster or admit me, and that I shouldn't stress about it. But the pain was so bad and severe that I have developed kind of PTSD wondering if it could happen again.
Has anyone experienced a minor leak or a SAH that wasn't picked up by CT scans or an MRI-MRA, but showed positive on a lumbar puncture? Do I have cause to feel so worried since my scans all came back negative? Thanks in advance.
