On September 13, 2010 I embarked on a journey in hopes that it would change my life. My husband and I loaded the car and began our journey to Baltimore, MD for the second time in just one month. Unlike last time, this would be more than a doctor’s appointment.
We met with Dr. Ben Carson at Johns Hopkins Hospital on September 14th and went over the necessary paperwork in preparation for my glycerol rhizotomy that was scheduled two days later. I was a little nervous after we left the doctor’s office. I didn’t know if it was because of all the tests that needed to be run preceding the appointment or because I was nervous of the outcome of the procedure scheduled for the 16th. Either way I knew I was really nervous.
Prior to having the surgical procedure, Dr. Carson scheduled me to have pre-operative work that included a medical exam, lab work, an EKG, and a cranial x-ray. After going up and down and all around the floors and buildings that make up the Johns Hopkins Medical Campus I knew that I was now more nervous then I was a few hours before. My husband and I left the hospital and returned to the apartment we rented for that week. We decided to take things easy and managed to relax a little bit.
The following day I chose to sleep in and sent my husband out to play a round of golf. I typically would prefer to join him on the links but out of fear of a loud sound or a sudden breeze I opted to stay behind. While he was golfing I managed to direct my parents around the busy streets of Baltimore as the arrived at “our apartment” to be there with me for my surgery. I managed to make the day before surgery as busy as possible and became a tourist for a day. I enjoyed spending time with my family as we walked the streets, cooked a home cooked meal and sat around talking to each other.
My alarm clock went off at 5am and I shot up out of bed. I am not usually a morning person but I knew that today wasn’t just a usual day. I knew that today would be a day I would remember for the rest of my life. It would be a day where I learn that my trigeminal neuralgia could either be put to rest for a few years or if this was something I will have to suffer through for awhile.
It felt like it took forever to arrive at the hospital, which was only a mile from “our apartment”, but once we did the pace quickly intensified. I checked in and was immediately taken back to pre-op where I was connected to an IV and the last tests were ran. My family was able to give a quick kiss and we said our ‘I love yous’ and then I was off. When I arrived in the operating room I noticed the clock reading 8:55 and I couldn’t help but think, “Oh crap! I was supposed to begin at 8:45am. I sure hope Dr. Carson isn’t upset that things ran a little slower then expected in pre-op.”
The next thing I remember is awaking to a nurse asking me what my level of pain was and me responding, “Eight.” She told me that it was better then the last time she asked me so I asked her where I was before. The nurse paused for a moment, looked at me and smiled, “I asked you about 30 minutes ago and you said ‘100!’” That alone made us both let out a laugh. Once I was awake all I could do was ask for my family to come back and visit. They were able to come back and give a quick hug and then they were taking back to the waiting room until I was more awake.
Shortly after that I was told that I was stable and able to be discharged so my husband was called back to hear my discharge instructions. After being told what to the Dr. Carson’s physician’s assistant, Ms. Carol James, came to do a neurological test to see if we could see any immediate changes from the glycerol rhizotomy. One test that was performed was when she would snap her fingers right next to my ear. It would cause so much pain that I cringed each time she had to perform this test. With my husband by my side Ms. James snapped her fingers. It was one of the loudest snaps I thought I’d ever heard and I cringed more then ever. I then paused for a moment, looked at my husband and then to Ms. James. I then asked her to snap her fingers again. That time I didn’t cringe at all as I knew that I didn’t feel pain when the test was performed. All I could to was think, “Wow! I can finally have my life back.”
Our celebration was short lived as a chaos erupted among the recovery room. The staff members were quickly running around and shutting the curtains of all the patients’ “rooms” All of a sudden, things began to get quiet. For this being a large hospital with many patients recovering from surgery I knew something was wrong. About five minutes after that my husband and I were informed that there had been a shooting in the hospital where a doctor was seriously injured and the gunman was still in a room. We were also told that the whole hospital was on lockdown and that no one is permitted to leave the rooms that there were in. although this was a serious situation that the hospital had to deal with, all of the nurses and staff in the recovery room kept treating the patients as though nothing was going on. Around 12:30pm a gut shot was heard and everyone’s hearts skipped a beat. Again, the recovery room went silent. Once the noise was heard and the staff realized it was directly above us and that those they are directly treating were safe, they began to take care of their patients again. After two and a half hours of a hospital lockdown we were notified that the hospital was safe to reopen. The damage was already done. The gunman seriously wounded a Johns Hopkins doctor, took the life of his elderly mother and then turned the gun on himself.
When the nurse wheeled me outdoors to wait for my car I was in fear that I would be in pain. There were many news helicopters flying above and sirens of many first responders could be heard. No pain. I then got in the car and we began to drive away from the hospital. I put my window down, hung my head out and smiled. No pain. I went back to the apartment and ordered some real lunch. No pain.
About five hours after surgery I was very pleased at the outcome. I already could bear the sound of loud noises, wind in my face and solid food again. I couldn’t have been happier. Four days after surgery I was beginning to decrease my medication and felt like I was starting to get my life back
Unfortunately my happiness was short lived. After being pain free for 12 days I noticed that I was starting to get little “zaps” again. Immediately I feared the trigeminal neuralgia was back and called my doctor. The trigeminal nerve is where herpes zoster (shingles) lay dormant and because of the work done to my trigeminal nerve during the glycerol rhizotomy the spots decided to make an appearance. I am on my second dose of an anti-viral medication and hope that the pain I am currently feeling is associated with that. I am still hopeful that I will continue to mend and soon I will be pain free again.
Although I am still in pain it is much less than it was before my surgery. I am extremely blessed for the gifted hands of Dr. Carson, the hugs of his wonderful physician’s assistant Carol James, the kind nurses at Johns Hopkins Hospital, and the quick action of all law enforcement that helped to limit the damage in the hospital that day. My trip to Baltimore was definitely a trip that I will remember for the rest of my life.
