A Brain Tumor Battle is Only a “Detour” in One Mother’s Life

My Brain Tumor Story

My brain tumor battle began long before I knew anything was growing inside my head. What I now recognize as symptoms had started manifesting themselves months and months before I stepped foot into a doctor’s office. But when my headaches and dizzy spells became nearly unbearable, I knew it was time to get to the root of the problem.Months after being diagnosed with tension migraine headaches, and an inner ear infection, my symptoms continued to worsen. A plea from my husband sent me back to the doctor, for the third time. This time, I told my doctor that we weren’t going to stop until we found the cause.

The results from an MRI of my brain, on April 10, 2009, changed my life forever. I will never forget the words my doctored uttered over the phone, “Mrs. Brown… I just don’t know what to say,” followed by the brief explanation of the facts surrounding the mass growing on and around my brainstem. The news only got worse for a while, as the first neurosurgeon told us that brain tumors are judged according to their location, and mine was in “a very bad location”. The next several doctors and teams of specialists all said the same thing. It was too dangerous to biopsy, to operate or treat at all. I was stuck with an inoperable brain tumor on my brainstem.

The news was devastating for me and my family. I could not function well enough to take care of my children or even myself. I could no longer walk down the hall because of severe vertigo. I developed tinnitis, or ringing in the ears, and the symptoms continued to mount. We didn’t have any good options and I was afraid I wasn’t going to have much of a life left at all.

But then the miracles began and angels came into my life. A neurosurgeon at the University of Utah Medical Center is one of the BEST in the world at operating near the brainstem. As he looked at my MRI scans, he turned to us and announced, “I can do this”. After 5 more HOURS of additional MRI scans, hundreds of tests, a hospital stay and minor surgery, I was admitted to the hospital to remove the tumor, on May 13, 2009.

The surgery was long and difficult, but successful in removing most of the tumor. In time we were blessed to find out the tumor was benign. However, upon waking up from procedure, it became apparent that I had several complications and side effects from the disruption to my brainstem and nerves. Most notably, I had grade 6 (total) facial paralysis on my right side, hearing loss, and a cerebral spinal fluid leak (CSF). While the paralysis has been the longest-lasting effect, the CSF leak turned out to be a near fatal challenge.

An up close look at my paralysis.

The CS fluid leaked out of my nose and down the back of my throat. This caused me to stay lying down all the time so the fluid would not drip out of my body. After 3 weeks in the hospital, and several minor procedures which attempted to to fix the leak, I underwent a 2nd craniotomy to seal the CSF leak. The doctors surgically farmed fat from my leg and stomach to “fill” the holes in my brain and stop the leak. They also used a special surgical wax to fill in any gaps in my skull, and inserted surgical glue to help hold everything in place. Unfortunately, that too was ineffective.

As my body weakened, I became susceptible to other complications. In early June, I started going steadily downhill, and no one was able to figure out the cause of the additional problems and symptoms. I was treated for spinal meningitis, but that did not solve my issues. Because of my unknown condition, I could not move my body at all because of immense pressure and incredible pain in my head. I was unable to eat, drink or even get up to use the restroom. I was totally dependent on IVs and multiple lines hooked to my body to keep me going. I laid still for days, moving in and out of consciousness, not able to move an inch, knowing that my physical body was rapidly declining. Even after throwing up on myself multiple times, I refused to allow my nurses to change my gown or bedding; the pain of movement was so extreme, nothing else mattered but perfect stillness.

My hope and strength were nearly gone. I had fought a painful and difficult battle in the hospital for 27 days and my body felt like there was no chance of survival. Just at the right moment, a Neurosurgeon resident had an idea to test for a particular condition called pneumocephalus, or “air on the brain”.  The CT scan immediately revealed that I had an extreme condition of pneumocephalus and I was quickly losing my battle. Teams of doctors responded immediately and I was rushed to the Neuro Critical Care (NCC) unit to begin treatment. This was the closest call of my brain tumor battle, yet also the source of the greatest miracle. I can hardly believe just how close I was to dying that night, but the Lord answered many prayers and intervened just in time.

After only 15 hours in NCC, my condition stabilized enough that I could have a 3rd craniotomy to seal my CSF leak. In this procedure, an experimental surgery that had only been successfully completed 6 times before, the neurosurgeon went in through my nose. Using a “needle and thread” technique, he found the leak and sewed it shut, finally closing the CSF leak that had plaqued me for 27 days.

Following my 3rd craniotomy…
With my CSF leak sealed, I could finally focus on my recovery. By then my body was weak; I was down to only 90 pounds and I could barely stand, eat or drink. I had to learn to walk again before I was eligible to leave. It took me another 8 days in the hospital before I was stable enough for the doctors to consider releasing me.
My children gave me plenty of reasons to keep fighting!
Tolan was always beside me (in person or in spirit) during the difficult fight for my life.
My father stayed by my bedside for 28 of my 34 days in the hospital. Though I do not wish
to re-live my time in the hospital, I will always cherish the quiet moments we shared together.
 Worn and ragged… but alive! Preparing to leave the hospital, after 34 long days!
When the long-awaited day finally came, I was flooded with emotion. I left the hospital a different person than the one who had entered 5 weeks before. My body was only a shell of what it had been, but I knew that I had won the fight.
 Arriving home — to a great “Welcome Home” party in the neighborhood!
 My first day home — snuggling with my sweetheart.
The adjustment to being home was not as easy as I had hoped. Living on IVs and being unable to move for so long took an enormous toll on my body. My system re-set in an infant phase, and I had to introduce foods one at a time for months. I had no muscle left in my body and I was incredibly weak. I hated to admit it, but I was still very sick, unable to eat, and unable to care for my family for quite some time. I spent the first months mostly lying in bed, but at least I was at home with my family!Shortly after my release, I had a 4th surgery, this time to help with my paralysis. Being unable to close my eye, my vision was declining and my cornea was stressed and damaged. In late June, a gold weight was surgically implanted in my eyelid to “weigh it down” and help it close.

My paralysis continued to cause problems for me, especially my eye. The weight helped, but I was still unable to blink and keep my eye protected, so I was given many “pirate patches” to protect my cornea and preserve my vision. Finally, after several months of healing at home, life started getting back to “normal” as much as possible, eye patch, paralysis and all.
My amazing mother lived with my family and took care of my children while I was sick and in the hospital. She left her home and her family, 3000 miles away, and lived with us for almost 4 months! She was a life saver! When she left our home, I honestly didn’t know if I would be able to take care of my family again without her.

In order for the brain to recover and heal, the body needs lots of sleep. My new “normal” included multiple naps and 10-12 hours of sleep at night. In time, the whole family got on a new “schedule”, and with LOTS of help from neighbors, friends, family and angels, we were able to make it, one day at a time! I started doing simple exercises to strengthen my body, and after a year, I was able to go to a facial therapist to help me learn to use my facial muscles again.

 My sweet Lindi helped me “bedazzle” my eye patches so I could hit the town in style.:)
Celebrating my 34th birthday with my family.
My paralysis continues to improve as my nerves are slowly regenerating. I now have use of 4 muscles in my face (out of 19), and I am eating, drinking, swallowing and speaking much better. Fluids still occastionally drip from my mouth and some words still get slurred, but I am functioning much better.In the summer of 2010, I travelled to California for a sepcial procedure in which a metal spring was surgically implanted into my eyelid. I still cannot blink, but I now have the ability to close my eye again. The progress is slow and some days are still painful and difficult, but every day I am told that I am looking more and more like my old self. But more importantly than how I look, is how blessed I feel to still here to be a wife, mother, daughter, sister, neighbor and friend!

Now that I have had my miracles, I want to help others navigate the “orange cones” and “detours” of life! To read my full “brain tumor” story as it unfolded, go tohttp://www.amiracleforjodibrown.blogspot.com/ and begin in the archives, in May 2009.

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