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I am alive. Though it was touch and go for awhile there...
I can only tell the short version, the long version is too long and painful.
So I had the surgery to remove the brain tumor on the 26th of May. There were complications from the start. Though the actual surgery went smoothly, the last thing they needed to do was to install a lumbar drain in my lower back so they could regulate the amount of cranial-spinal fluid that was there, and remove some if the pressure built up, which would exert too much pressure against the surgical site and new patch they added to seal everything up. The difficulty came in installing the lumbar drain as I had lost a great deal of CSFluid during the operation and to install the drain they needed the spinal column full enough so when they ran the tube up, fluid would come out showing they were in the right spot. So they had to wait several hours (with me fully out) while my body replenished the supply, and while a specialist was called in to install the drain. Several attempts had been made to no avail. My family had waited from 7:00am, and expected me to be out of surgery at 1:30 pm, but I didn't finally come out until after 5:00pm. But all was good, I awoke fine and except for soreness where I had been intubated I was okay.
But over the next couple of days I got steadily worse. I started running high fevers 103+ was the highest. I was shaking violently, freezing cold with chills one moment and roasting hot the next. I was itchy all over and thrashing around in bed. I had to have the room darkened at all times because the faintest light hurt my eyes and gave me splitting headaches. During the times I was awake I was in horrible pain and when I slept I had nightmares like I've never before experienced.
What I had was meningitis. Likely it was not bacterial (they tried to culture my blood, urine and cranial fluid but nothing grew). So likely it was chemical, probably caused by contact with the liquid contents of the tumor, which was in part, cystic. There is no real treatment for chemical meningitis, but because there were white blood cells everywhere, they treated me for bacterial meningitis, which involves a two week course of heavy-duty, broad spectrum, IV antibiotics. After several more days I got better and could walk around. I was on some pretty strong narcotics administered via IV, and eventually they put me on pills. I continued to get better and walked 20-30 times around the ICU every day. After 9 days, they sent me home with a central IV called a PICC so I could continue to give myself the antibiotics at home (a visiting nurse came over to show me how).
So on Friday, June 5th I got home. The following Sunday morning, about 11:00, cranial fluid started dripping from my nose. The patch had failed! SWMBO drove me to the emergency room and within a couple of hours I was back in the Neurosurgical ICU. :-(
My Doctor was at a conference in Florida and wouldn't be back until Wednesday. But he flew back up early and on Tuesday afternoon they operated on me again to repair the patch and the leak. The original patch was likely weakened by the meningitis and inflammation that came with it. The new patch was stronger and would hold, all the docs told me. But still they took no chances and every hour drained 10cc of CSR fluid for the next 3 days while constantly monitoring cranial pressure. All went well.
Still there were complications, I had fevers, though not so high. Eventually, the antibiotic courses were done, but I started having shortness of breath. My lower lungs were a bit collapsed, so I walked more and used a spirometer every hour. Then they discovered a blood clot in a deep vein, near my groin. So the last few days were spent with a heparin drip, transitioning to Coumadin. I finally got home yesterday, after the better part of a month in the hospital.
I can't swim, or submerge my head in water for three months. I can't exercise heavy, or engage in any activity that will increase my blood pressure for a couple of weeks. I can walk, but since coming home I've done little more than sleep. I do not believe that I slept more than 2-3 hours at a time while in the hospital. I have some catching up to do.
I hope I won't leak again and that my poor battered body will begin to heal. Eventually I hope to feel better. My eyesight, which is the reason this whole thing happened, is much better, thank goodness!
I'm glad to be back amongst the living!
Height: 5' 10"
Starting Weight: 292
Starting Primal Weight: 275
Current weight: 224
Goal weight: 172
Body Fat 30.5