Sep 11 2012

Leah’s Story


Age of surgery: 23

City/State: Toronto, Ontario

Type: Schwanoma, C2

Hospital: St. Michaels Hospital, Toronto

Neurosurgeon: Dr. W. Tucker

Surgery: July 2000

Radiation: No

Leah’s Story

The very first thing I’d like to say is that it has been one month since my surgery and I’m doing great. I’m almost back to normal except for a wee bit of tiredness, some fairly mild headaches and some neck weakness . The reason I felt the need to start off my story in this manner is to assure whoever is reading this TO BE POSITIVE and that with time YOU WILL BE OK. I first found this website only hours after being told that I had a tumor. I could barely read the posts because of the tears in my eyes and because of the terror that was ripping through my body. It is my hope that this story serves as ray of positivity to those just discovering that they have some sort of spinal cord tumor. About two years ago, the left side of my neck started to hurt; it almost felt as though I had a crink in my neck from sleeping badly. The “crink” didn’t go away so I decided to visit a chiropractor. After a few treatments, I definitely started to feel better. The chiro took some x-rays and told me that the pain was a result of a slight curvature in my spine. Although the pain never completely disappeared, there was a dramatic improvement after my treatments and when the pain came back, a single Advil tablet would make the discomfort go away for a couple of days. Last July, I got this weird sensation in my finger tips on my left hand. I wouldn’t describe the feeling as numb, it was more like a loss of sensitivity. The chiropractor said that it was most likely something called Thorasic Outlet Syndrome whereby a nerve on my left side was caught somewhere or something (yada yada yada). The loss of sensitivity in my left finger tips was becoming gradually worse and over the period of a couple of months it slowly spread to large region on my left hand. I didn’t take these symptoms as seriously as I should have because it really didn’t affect my life in anyway other than missing some letters while typing. In December of 1999 I paid a visit to my family doctor. He told me that I should just see how it goes for the next few months and if the symptoms were still present after school (beginning of May!!), he would send me to a neurologist. I think at that point I was still really downplaying the severity of the situation because I was nervous and because I was in denial. A few days later, I called the doctor back, told him I had a weird feeling and I’d like to see a neurologist sooner than later. In February 2000, I visited the neurologist who set up an MRI for me. In Canada (for those of you who don’t know), it takes about 4 months to get an MRI because of our healthcare system – it’s free, but there is quite the line up for these things. I FINALLY had the MRI in June and the following day I was told to go to my neurologist where I received the news that I had a benign, potato-size tumor seriously compressing my spinal cord. It was a very slow growing tumor that could have started growing a decade ago. The tumor had be removed because if it grew much more, I would have become a paraplegic and it would have been ‘game over’. My family and I (after a major freakout) began researching surgeons and settled on Dr. Tucker who has an excellent reputation in Ontario. When we met with Dr. Tucker, he explained that the doctor who read the MRI thought that the tumor was a meningioma (tumor that started growing from the cells of the dura), but he thought that it may be schwanoma (tumor that started growing along a nerve). My surgery was booked for July 6. I’d like to be able to sugarcoat the surgery experience for you, but I can’t. I was TERRIFIED beforehand. I had to be sedated and whatever drug thay administered to me was absolutely fabulous! The surgery took approximately 5 hours. The tumor turned out to be a schwanoma that was both intra and extra dural (nicknamed a “dumbell”). In English, the tumor originated on a nerve, but it grew on both sides of the dura, which is the casing of the spinal cord. Essentially, the nerve had to be cut and a hole had to be cut in the dura to release the tumor. As a result of the cut nerve, I have lost feeling in the jaw region on my left side near my neck. All I remember about the time after my surgery is that I couldn’t move. Actually, that’s pretty much how the second and third days went as well only I was starting to be forced to make small movements. One night my legs went completely numb, but the feeling gradually returned over a period of a couple of days. Also, my left arm from finger tips to shoulder was very numb as well. Moving at that point was absolute agony. The only was I can describe it is to make some sort of comparison to very thick elastic bands. I felt as though they were twisted all over my neck and shoulder area inhibiting movements and constricting my entire body as a result. The first three days were the worst, but it’s amazing what the body can do. By day 5, I was able to walk along the road outside of the hospital (very very slowly and with my mom) to get a coffee. I was released one week after my surgery. The first week back at home was painful, but not nearly like the pain that I had endured at the hospital. I was very helpless at home and for the first few days, I couldn’t do ANYTHING by myself. I was extremely stiff and if were up to me, I would have lounged around ALL day without moving a muscle to avoid having to deal with my stifffffff neck. Unfortunately, as comfortable as that may be, it is not the best way to a speedy recovery. I had to walk around as much as possible and continuously attempt to stretch out my neck. About two and half weeks after the day of my surgery, I was able to go out and have a drink with my friends…..I was starting to feel human again! At this point, I think I’ve reached a plateau of sorts. I don’t see a dramatic improvement every day the way I used to, but with lots of rest I should be back to normal sometime soon. I lost a lot of blood during the surgery (the tumor was unexpectedly caught in a bunch of arteries that had to be cut) so I take iron pills 3 times a day and there’s a chance that I’m anemic right now…..but that’s really nothing compared to everything that I’ve gone through. I’ll be able to return to school in fall, which is quite amazing considering that about 6 weeks ago I had no idea what was going to become of me. I’m going to see my neurosurgeon today for a post surgery checkup and I’m hoping that he’ll be pleased with my progress. Because of my family and because of some MAJOR strength that I didn’t even know I had, I made it through this ordeal. There is a chance that this tumor can start to grow again, but I’ll cross that bridge in the future if need be. In the mean time, I’m going to put my hair in a high pony tail to show off the 5 inch scar that runs vertically down my neck because quite frankly, I’ve earned that sucker.