Craniopharyngioma

The story of a 30 year old father

My name is Chris Simpson. I am a 30 year old dad, husband, son, friend who is happily married to a beautiful wife and best friend, Jennifer, for five years (we have been together since high school, 13 years total) and I have the best son anyone one could ask for, Steven Michael who is 5 months old. We live in Northeastern Pennsylvania in the Pocono Mountains.
In April 2003, I was getting headaches and once in a while when I got up too fast, I would get light headed and almost pass out. I never blacked out totally though. So I went to my general doctor to get checked out. I really thought I was getting diabetes or had high blood pressure (with the dizziness, I thought it was sugar-related). My doctor said my blood pressure was moderately high, but not enough to do anything at this time. She gave me a referral for a CT scan of my head.

Well, with my job, I am very busy and cannot just take off for a test. So naturally I kept putting off the scan. Until!!

One day at work, I was at my desk and got up to get a drink in the kitchen. I made it to the kitchen and collapsed. I did not black out. I just got so dizzy that I could not stand. My employer made me go to the emergency room where I got a barrage of tests, including the CT Scan that I needed to get anyway.

The CT Scan showed, at that time, what they thought was a Colloid Cyst in my third ventricle. They eventually discharged me and referred me to a neurologist. I went to a neurologist and got a MRI, which confirmed the diagnosis and an EEG. The neurologist was very concerned about my EEG, which showed a great deal of pressure around my brain. Plans were then immediately made.

The next thing I know I am packing to go into the hospital, packing me, my wife, and our two dogs. I was to be admitted to Hahnemann University Hospital in Philadelphia, PA. That is a 2 = hour drive for my wife and I. Note: my wife at this time is 7 = months pregnant with our first son. Luckily, our parents live about = hour away from the hospital and Jen and our dogs stayed with her parents during my stay at the hospital.

I was admitted on April 14, 2003 and had a craniotomy on April 17, 2003. The surgery took 6 hours and after recovery, I was sent to the Neuro Intensive Care Unit, where I ended up staying for three weeks. It was decided during the surgery that this was a craniopharyngioma and only 60% could be removed at this time. It was too dangerous to remove the other 40% because it was too close to my optic nerve and he did not want to affect my pituitary gland. Radiation treatments would be needed for the other 40%. They then waited to see if I needed a VP Shunt installed and were watching my pressures.

While laying on my back for that long I managed to have a Pulmonary Embolus (Blood Clot to the heart). I managed to pass the clot (thank you God). They placed a Vena Cava Filter in my groin to help prevent future clots from traveling up my leg to my heart. A month later they also placed me on Coumadin (blood thinner) for six months. Two days later my body went into respiratory failure/ congestive heart failure and I almost died, again. My blood pressure dropped, pulse raced, it was not good. They asked my wife to come in and talk to me. She finally calmed me down enough for my levels to stabilize. She saved my life (thank you).
I finally had the VP Shunt placed..

Because of being on my back for so long, I lost all my strength. I could barely walk and what I could do was with a wheelchair or large walker. I finally got out of Neuro ICU and was sent into a regular room where they started me on some physical rehabilitation once a day.
After the month stay at this hospital, they transferred me to an inpatient rehabilitation hospital. Good Shepherd Hospital in Allentown, PA. This hospital is only about 45 minutes from our home, so my wife was able to stay at home and travel each day to see me. At this time, she is 8 = months pregnant. I stayed here for a week where I learned basic functions all over again. It’s incredible how fast you can loose your everyday movements. I really enjoyed the stay here- they were very professional and got me moving again.

After a week at Good Shepherd- in the brain trauma unit, I was sent home. It was a great feeling. I haven’t been home in five weeks. Haven’t seen my dogs. Haven’t slept in my bed or sat in my chair. I then arranged to have outpatient rehabilitation three days a week.
Outpatient rehab was good. I was building my strength and endurance. It is now around the last week of May 2003.

I continued to do rehab for the month of June and got to the point where I did not need the walker any longer and only used a cane.

On July 2, 2003 my wife went into labor and I was by her side the entire time. This experience is something that two months earlier I did not know if I would be well enough to be standing by her side. It was incredible. Steven Michael Simpson, 20 = inches and 7 lbs 8 oz. One of the highlights of my entire life.

The following week I started radiation treatment at Pocono Medical Center, the Dale and Frances Hughes Cancer Center in East Stroudsburg, PA. I had 34 sessions of IMRT radiation treatment seven weeks.

I started back to work on July 14, 2003. Mostly office work at first. I am a safety and fire inspector that does commercial inspections for insurance companies. It sometimes involves a lot of walking and sometimes climbing ladders to get to roofs.

At this point with the radiation treatments and working a full day, I am exhausted when I get home. I mean totally exhausted. So I made an appointment with my endocrinologist as suggested. We got some blood work done and my testosterone level is really, really low. So we discussed male hormone replacement. It would probably make me feel a little better; however, I have a large history of prostate cancer in my family. So the doctor referred me to an urologist who gave me a clean bill of health and recommended the hormone replacement therapy. I also think I have Diabetes Insipidus, which I am currently getting checked out before I can get on DDVAP).

Anyway, back to the timeline. On September 4, 2003, I was readmitted into Hahnemann University Hospital for a "revision" of the distal end of my VP Shunt. The VP shunt was not draining properly and the fluid was building up under my skin on my stomach causing a very large bulge. So another three days in the hospital. To be honest with you, it was kind of nice visiting the nurses and doctors, who took care of me just five months earlier.
So I am back to work, the radiation treatment is finished, I am working on getting my hormones straightened out (thinking of looking into GH), and I have a wonderful, adorable son. Besides the fatigue and my weight gain, the only other thing that is still not back to normal is my sense of smell. It’s gone. I can’t smell anything. It is really weird. Great for diaper changes, but I miss,( really, really miss) so many smells- foods, my wife’s perfume, my son’s head, a rainy day, a Christmas tree.. It’s difficult, but hey’ I am alive.
Chris Simpson- dx 4/03, sx 4/03, hydrocortisone, synthroid, Lopressor, Prevacid, Androderm- patch.