The neurosurgeons had somehow sucked out my tumour and patched the hole with some fatty tissue from my thigh, but they weren’t 100% sure that they had sealed up the hole. A cerebrospinal fluid (CSF) leak is super dangerous as it might let meningitis in. So I was stuck in the hospital till they were sure. They sent a sample to the lab, but said it took two weeks to identify. The neurosurgical chief resident said, “Maybe it’s CSF, maybe it’s not.”Or did he say, “Maybe it’s snot.”
Some people have nothing running from their nose after surgery and are sent home the next day. Not me. By the fifth day after surgery, the neurosurgical residents, both named Mohammed (to avoid confusion, one went by Mo), decided that if pressure was relieved from the graft plugging my wound, it might seal more quickly. I would have a lumbar tap (!) to drain spinal fluid.
Mo moved me to the Procedure Room and stuck a large needle into my spinal column between the 4th and 5th vertebrae. I asked for more freezing. Twice.
Eventually my drain was set up. I wasn’t allowed to move for 24 hours. By Tuesday at 4:00, they still weren’t sure. They let me get up, but kept the spinal drain in, turning it off when I sat up for ten minutes, then turning it on again when I lay down. Every hour, they checked the drainage. If it was draining too much, they turned it off for a hour.
By Wednesday, they decided to prep me for surgery. A porter moved me onto a gurney and wheeled me down for a CT scan. Contrast dye was added to my IV. They put sensors on my forehead and behind my ears. The scan creates a picture that helps the surgeon see where the endoscope is going (I think). The sensors correlate to the CT scan and must not be removed.
Wednesday night, they say I’ve been added to the emergency surgery list. Mohammed said, “We hope we can get you in within 48 hours.” I’m attached to an IV for nutrition and meds. I was forbidden to eat or drink, even water. I have markers on my head, my CSF is draining. They wake me up every few hours for vitals. They take blood. And this continues all day Thursday as I wait for a second surgery to fix the assumed leak in the plug.
4:00 pm. Thursday. 8 days after the initial surgery. Dr. Reddy, head of neurosurgery, appears. He asks me to hold my head down to see what is leaking from my nose. At this point, nothing. He says, “We just got the results back from the lab. There’s no CSF. Get dressed. Go home.”
And I did.
Narrowly escaping a second horrific surgery.
Lil, you may want, at some point, to reach out to the Hermelin Brain Tumor center at Henry Ford Hospital in Detroit. I’m a month and three days away from celebrating a year without a brain surgery. I’ve had two. The first on 4/19/2012 and the last on 1/8/2021. Pushed to pick a favorite, I’ll go with number two. Number Two being a stereotactic ablation and needle biopsy of cancerous brain cells. I was home the day after and having minimal physical pain. Surgery number one was craniotomy, right side of my skull cut away and tumor cells were suctioned out physically, rather than heated up and destroyed. This surgery was terribly painful and I made good use of my morphine drip. I’d you can, please research out to my most recent surgeon, Dr Ian Lee at Henry Ford Hospital. I’ve experienced that stereotactic ablation surgery is much safer and precise. Turns out that physically removing diseased cells has a dramatically higher likelihood of damaging nearby capillaries and causing patient stroke. In ablative surgeries, blood in capillaries acts as a heat sink, sparing the capillaries themselves from damage, reducing chance of stroke. This then allows for surgeries that otherwise would be deemed too risky. To feel fully recovered took months this last time, but with patience, some physical therapy and support of loved ones I’m feeling great. Please keep us Hubskiers updated. Thoughts, prayers and well wishes to you daily. :)
I didn’t realize that you’d been through so much. I know a little bit about the mk family - quite a few dramatic stories there. Thanks for all the info. There are amazing doctors and amazing developments in medicine. I am hoping (and believing and acting as though) my tumour was a benign meningioma, not malignant. But I was resigned to not getting through this if that was the case. I may say more about that in due course. I wasn’t interested in raging against the dying of the light, I m not a fan of suffering. I felt and still feel curious at my reaction to possibly dying. I’m aware too that you are likely in your late 30s or early 40s, with young children and mid-career, very different from me). (Yes, more to say on this. Love to hear your thoughts as well).
Good God, a runny nose. I am so happy to hear that you dodged a second and unnecessary surgery! I can't imagine the anxiety. Let's hope that like donating blood, draining out a little CSF is good for you. I'm sure there's little to no downside from draining, aside from the horror of it and the risk of infection, of course. You cousin was right enough? Happy Hanukkah, lil!
Thanks mk, and thx for watching the video. Actually, if I ever write and perform the whole thing, part 2 begins, “My cousin was wrong.” Recovering from this particular surgery has been difficult, but I hope will continue more easily now that I’m home. I’ve been messaging with your brother and I’m very moved by his story and the entire K family story, of which I know only bits. I’m grateful for the ongoingness of hubski (proofreading I discovered auto-correct had changed it to “ongoing mess of hubski” - fixed it). I posted my story on hubski as you know, and sent the link to many family and friends, so there may have been a little bump in visits.
Thank you for following my saga. My hubski participation has slowed somewhat since 2016, but I’ve made wonderful connections within our community and now I’ve contributed to everyone’s knowledge about meningiomas, even if they didn’t want to know. I well remember our Detroit meetup eight years ago when I drove three hours over the border with @the advancedapes@, spent three hours with y’all in a pub, then drove three hours back to Toronto. Poor Apes. He was driving my new Prius at 3:00 a.m. on a fairly deserted highway and wanted to go 160 km/hr (100 mph). I kept cooling his jets to the speed limit. Remember that thenewgreen mk and even our dear @insomniasex@ was there that night. Who else? The unforgettable b_b?
That was a great night. You could even say life changing for me in some ways (though going into details as to why would probably bore everyone). Or maybe not. But it was fun and memorable nonetheless. I can't say that I have everyday contract with any of the players anymore, but you're all dear to me. My best wishes to you for a speedy and full recovery. No matter your level of participation, you're the only emerita member of the hubski community, with all the honors with which that comes. Much love. -Ben
I’m sorry you had to go through this. I can’t imagine what an emotional roller coaster this must have been. I am so glad that you are going to be alright. Onward!
Thanks! pm me an update on your life's journey. I went back to the lengthy chat we had about a year ago -- before vaccines were out, everyone was in isolation or quarantine. You said this: I have no idea how all that is going. I also found the answer to how you knew the phrase "Mi Sheberach" -- which is very very appropriate. I hope to have more to say next time c_hawkthorne creates a jitsi meetup.But, hey, I'm 22 and should be a PhD in a year or so. Maybe there will be options for me beyond academia or menial work. Professoring around isn't something I can see myself doing