MS, MALIGNANT TUMOR, EDEMA, SWOLLEN FRONTAL LOBES, CASE STUDY

MS, MALIGNANT TUMOR, EDEMA, SWOLLEN FRONTAL LOBES, CASE STUDY

In one quick trip in the mri machine, life changed, Again.  My mom flew into town and within an hour she “knew something was really wrong with me.”  She suggested Rex take me to the er when he arrived home from work.  Thirty minutes into our er visit, and I was being wheeled to neuro-icu where I would stay for the next 13 days. 

 

I knew I didn’t feel well.  I hadn’t felt well since radiation in July, but the receptionist didn’t seem to care when I called for an appointment with my neuro-surgeon and radiation oncologist.  No apt necessary is what I was told. 

And then a few months went by and I landed in the icu. 

It was a wild ride.  One I’m still on, since full recovery is estimated to be up to a year. 

On the board of 9 specialists, there were 5 differing opinions, none of which were concrete.  The only thing everyone agreed on was that my frontal lobes were excessively swollen, and that whetever was going on, was a reaction to radiation. 

Meanwhile, I’m exhausted, laid up in bed for up to 15 hours a day and saying anything and everything that comes to my mind (because that’s what you do when your frontal lobes are swollen).  Apparently it’s the equivalent to being extremely intoxicated, EXTREMELY.   

And so the tumor board met several times on my case and decided to discharge me after 2 weeks in the icu since they were only observing me.  I was discharged and placed in home health care.   

Home health care provided me an iv pole and 1800 mg of steroids a day.  As if the swollen frontal lobes weren’t enough, we’re going to try high dose steroids too?  Whew, I’m glad to have that behind me. 

A week after the steroids another scan showed the swelling or tumor, or whatever it was, had worsened.

I was scheduled for a brain biopsy.   I completed the pre-op scans and necessary blood work for surgery which was to be the following day.  It was a 4:30 brain biopsy surgery.  At 8:30 the morning of the scheduled surgery my surgeon called with amazing news.  The panels of dr.’s involved felt there was slight improvement and thought it best to postpone the surgery in hopes of healing without an invasive procedure.  Thank the Lord!   I was elated!  I had been spared, at least temporarily, a brain surgery. 

A month later, we would scan and continue to watch for activity.

As the month approached, I went in for the scan with great hope that I was healing.  I was beginning to feel better, hopefully it was because I was actually better.  The scan was still troubling to the tumor board, but there was steady improvement.  No surgery scheduled.  Another scan planned for a month out. 

By the next scan, there was significant improvement!  The specialists on my case reported that “they had never seen anything like this before,” and my neuro-surgeon said “we’ll be studying you in the text books for years to come.  We have no idea what’s going on.” My MS specialist stated that in her entire medical training and practice she had never seen a lesion disappear as mine had.  “Especially one that large”, she said in amazement.  Internally I chuckled, you don’t know my God, I thought. 

 

And so this healing process is estimated to take up to one year.  I am thrilled to report that I am only 6 months into healing and I am feeling pretty dang good.  In fact, I have ran three half marathons in the last three months.  Hooray for feeling better!

I’m still being watched closely, but it appears I am on a strong road to recovery.  

Would appreciate prayer as I continue to scan regularly to monitor this healing process!

 -Chrissy