When evidence of intracranial hypertension was found on my MRI, my neuro-ophthalmologist ordered a stat lumbar puncture. With not driving, not knowing the date of the procedure and my husband out of town, I had a lot of anxiety how I was going to get to this procedure and back. To that end, outpatient stat means something very different than inpatient stat and it was ordered on Thursday and not performed until Monday when my husband was back so there was no reason to worry.
A lumbar puncture is also referred to as a spinal tap and a needle is inserted into your spinal fluid via your low back to test the fluid. This procedure was done by using an X-ray to find a good position. Unfortunately, I have scoliosis and needed to be an a relatively awkward position for them to get the needle in easily. Luckily, there were no issues once they found the correct position. Normally, you would wait 15 - 30 min after they removed the fluid for it to redistribute along your spinal cord and in your brain. Since this was an outpatient setting, they put the bandage on, gave me instructions on managing the injection site, and sent me on my way less than 5 minutes later.
I ended up having the worst headache of my life (and I have had viral meningitis and migraines in the past). For the first 2 days, I couldn't lift my head off of my pillow without my head pounding. The next day, I could sit up but no quick movements. Each day it slowly slowly got better, but it took me a complete week to be back to my baseline.
Around the same time as the lumbar puncture, I started having excessive exhaustion. It was persistent and some of the worst exhaustion I have experienced. One day after work, I slept 18 hours and only waking for a brief moment when my husband checked on me to ensure I was still alive. Most days, the exhaustion set in sometime during the midmorning (2 - 3 hours after waking) and often, I couldn't physically stay awake. I went from working out (high intensity interval training) three days a week or more to not being able to walk half a mile without a nap. This exhaustion continued for about a month and a half and nothing seemed to improve it. After some slow improvements and a change in meds, I began to improve a little each day. To this day, I still get overtly tired if I do too much computer work but not usually if I do anything physical.
My lumbar puncture showed I had elevated intracranial (brain) pressure and an extremely low glucose in my spinal fluid. With my neuro-ophthlamologist appointment 2 weeks after the lumbar puncture was completed and having my results, one of my other physicians prescribed a medication that can help with idiopathic intracranial hypertension, acetazolamide. This medication is a diuretic that can help in both intracranial hypertension and altitude sickness. Additionally, she referred me to Mayo Clinic neurology and ran a few more laboratory exams.
Once I saw my neuro-ophthlamalogist, my vision hadn't improved despite treating the potential intracranial hypertension for nearly 2 weeks. We discussed my results and although my brain pressure was elevated, it was considered indeterminate levels for intracranial hypertension. I had a pressure of 24 mmHg and 25 mmHg is diagnostic and 10-18 mmHg is considered normal. Also, it was unclear why my glucose was so low in my spinal fluid as it didn't follow a typical idiopathic intracranial hypertension picture. She began to doubt whether the intracranial hypertension was causing the vision issues since the pressure was not excessively high nor did the medication help. She had me stop the medication, which ended up getting restarted that weekend after my vision began to oscillate. Nonetheless, she wanted to refer me to a tertiary center which she added neuro-ophthalmology specialty to my Mayo Clinic visit. Typically, losing your vision due to intracranial hypertension is a neurologic emergency and neurosurgery should be conducted, but my picture was unclear and the risks may outweigh the benefits thus the referral was necessary.
More to come regarding my Mayo Clinic visit.