A pain in the neck...

Well, hello! I bet you didn’t expect to hear back from me so soon! I am back to share some breaking news with all of you…

You might remember me mentioning in my last post that my first PET scan was scheduled for today. A PET scan (positron emission tomography scan) is an image test used by doctors to determine disease within a patient’s body. For cancer patients, the PET scan is the tool used by doctors to determine if any cancer clusters exist in the body… or at least the section scanned.

Today, I was scanned twice. The first scan was from my neck to my waist, and the second was from my neck to the top of my head. As usual, the scan went quick. I was in and out of the imaging room in about fifteen minutes.

So… I wasn’t supposed to find out the results from today’s scan until next Monday, but an issue came up that required the doctors to review my PET scan immediately.

Over the past week or so, I’ve been experiencing an odd sensation. It started in the back of my neck and slowly progressed into both arms. The best way I can describe it is hypersensitivity of my skin. When I run my hand over my neck and arms, it feels like shards of ice moving across my skin. It doesn’t hurt, but it’s not the most pleasant of sensations. The tingling only happens when I rub the skin, and only lasts a couple seconds. If I continue to rub the same spot, the tingling seems to go away… as if the ice melted. A couple minutes later… I can rub the same spot and get the same results. Additionally, on occasion, my grip strength seems to suddenly weaken. It’s most noticeable when I go to grip something. It’s as if my strength has been ripped from my hand, and replaced with a numb feeling.

Anyways… I’ve been contemplating whether to call my doctor, or not. The radiology imaging place is one blocks away from my medical oncologist’s office, so I figured I’d give her a call. Then I called, I got the secretary, who was kind enough to take a message for me. I figured I’d give the doc an hour or so before I headed back to work, so instead of leaving immediately after my PET scan, I went to lunch.

I ate my lunch hoping my oncologist would call, but that didn’t happen. I was certain she was busy with other patients, so after lunch I headed back to work where I continued working through the afternoon.

I received a call just before 2 p.m. It was my doctor’s nurse assistant. She is one of the coolest people ever… very friendly and always full of good information and advice. She asked me a bunch of questions about my condition, but whatever it was… it had her stumped. The nurse told me she would talk to the doc and call me back before she left for the day. So, I went about my day. I figured it was no big deal. In fact, I felt kind of silly for having called her because I knew I had an appointment a week from today.

I headed home around 3:30. I had to stop by the dry cleaners, so my commute was a little longer than usual. I was almost home, when I received a phone call from the nurse. She informed me that she had mentioned my condition to my oncologist and was pleased to report the doctor knew exactly what I had. In fact, the doctor was so intrigued by the condition that she called the radiology lab to get my PET scan results immediately. From looking at my scan, she could confirm the diagnosis of my new condition. The nurse told me I had a very rare condition known as Lhermitte’s Syndrome or Lhermitte’s Sign. Basically… the fibrosis in my neck muscles (caused by the radiation) has caused my neck to become slightly compressed… putting pressure on my cervical spine, thus causing my nerve endings to become hyper sensitive. This syndrome occurs in less than 5% of patients who have undergone the same treatments as me. The doctor was able to confirm the diagnosis via the small amount of fluid built-up in my neck that surrounds my spinal cord. The fluid presses against the cord whenever I look down. The good news is… it goes away in most cases. It has been known to last anywhere from a couple months, to a couple years. But, it is not life threatening.

So… my PET scan proved useful almost immediately. Oh yeah, the nurse was also pleased to report there are no signs of cancer in my body.  

😊