Way back in December of 2000 my husband and I thought that after Bethany’s brain tumor surgery we would all return home and go back to living our lives the way we always had.
The doctors had all assured us that this was a relatively routine procedure for a brain surgeon. Normally, this type of surgery required about a week’s stay in the hospital. It would be a quick recovery, we were told. Little did we know that the hospital stay would actually end up being two long months. I remember after about two weeks in the hospital, waking up one morning thinking, “If I have to wake up in this hospital one more day, I will go insane”. Only by the Grace of my loving God, did I woke up there every morning for six more weeks without going insane!
Bethany suffered through many complications, infections, and other assorted setbacks. The first set back was that her incision began leaking cerebral spinal fluid. For some strange reason, her brain had begun manufacturing ten times the normal amount of spinal fluid that an adult’s brain makes. This necessitated a tube being inserted into her spine and snaked up to her brain to temporarily drain the excess fluid into a bag. This caused the need for a permanent shunt to be installed into her brain which would drain the extra fluid into her stomach. However, the shunt became infected with meningitis and needed to be removed. This required the re-insertion of the tube up her spinal column and into her brain again while waiting for the infection to clear up. When the infection was gone the plan was to install a new permanent shunt on the other side of her brain. The drain bag had to be kept at ear level at ALL times. After a certain amount of fluid had been drained the tube was clamped shut until it began building up again. When this happened we could literally see her head start swelling up! We had to be extremely careful not to let her brain over drain or drain to quickly. Needless to say this was scary, stressful and nerve wracking!
I became an expert at keeping that bag ear level while placing her in her stroller then pushing the stroller with the rack holding the bag of spinal fluid at ear, level around the hospital hallways! Unfortunately, this tube also eventually became infected with meningitis and had to be removed. As a last resort a tiny tube was place directly into her brain which drained into the bag. Finally, she was able to heal from the infection and miraculously her brain began making less spinal fluid. She no longer needed a shunt or drain of any kind!
At this point in Beth’s treatment she had a picc line installed so that she would not need to be stuck with needles several times a day for blood draws. This significantly decreased her torture. She also needed a feeding tube inserted into her nose, down her throat and into her stomach because she had totally stopped eating at this point.
One night, quite unexpectedly, Beth suffered a very long tonic clonic (grand mal) seizure. she had never had a seizure before. An MRI revealed that because the tumor was so big (the size of a base ball), and she had lost so much spinal fluid, her brain had been squished and stretched, leaving too much room for her it to move around. As a result, her brain had fallen 1/4 of an inch causing a cerebral hemorrhage in her left parietal/occipital lobe border, a massive stroke in her left parietal lobe, and blood clotting in another part of her brain. Yes, Betty Boop was now put on Heparin, a blood thinner to dissolve the blood clots in one part of her brain, while another part of her brain was bleeding uncontrollably! She was also put on dilantin to control seizures.
Finally the day arrived when Beth was well enough to go home. There was just one problem, she still technically had hydrocephalus (excess spinal fluid in her brain) with no shunt. We were told that we would have to observe her very carefully for signs of fluid build up in her brain. Excess sleepiness and inability to wake up (coma) were the symptoms. One doctor told us that her chances of sudden death were about 1 in 100. Every day for months I would wake up and wonder if this was the day that Bethany was going to suddenly die!
Flash forward 12 years. Bethany is still with us, thank the Lord! She still does have excess spinal fluid in her brain, but it flows correctly so we no longer worry about sudden death from hydrocephalus. However, even after 12 years and consults with Neurologists up and down the east coast, no doctor has ever been able to get her seizures under control. No medications help and she is not a candidate for a VNS or surgery. The longer a person suffers from uncontrollable seizures, the greater their risk of becoming a victim of SUDEP. SUDEP is sudden unexplained death in epilepsy. So we do still worry about sudden death. I pray every time she has a seizure that it won’t be the one that suddenly kills her.
Living with this kind of stress day by day has become one aspect of our new normal.
To read more about Life after brain tumor: our new normal please click on Bethany’s Brain Tumor Diagnosis!