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Schwannoma Case Study #1, Lumbar Schwannoma at L 5, S 1, with Regrowth, Requiring Three Surgeries
1)
How old were you at the time of your diagnosis?
I started feeling the pain of the schwannoma at the age of 15, but went misdiagnosed until the tumor was discovered, when I was 18.
2)
Do you have any history of Schwannomas in your
family?
There have been no others in my family to have a schwannoma...Thank God.
3)
Where was your Schwannoma located? And what were the symptoms that lead to your
diagnosis?
My tumor was located at L5-S1 on two occasions, but on the third recurrence, a piece of it was also located in the sciatic nerve to my right leg. My pain started when I was 15. I shouldn't even call it pain at that point, because it just felt like my tailbone was a little bruised. By the age of 16, that "slight uncomfortableness" had turned to pain. With every step I took, I could feel the pain radiate down my right leg. It was no longer a pain that I could tolerate, so I had many trips to different doctors to figure out what was wrong. Unfortunately, I was misdiagnosed for 3 years. I heard everything from, "there's nothing wrong with you", you bruised your tailbone", "you must be depressed, are you having trouble with a boyfriend", "you must be anorexic", to my favorite "you are just doing this for attention". I had also started experiences changes with my bladder and bowels. It was becoming increasingly difficult to urinate and I suffered from constipation. At times my pain became so severe that I ended up on many occasions in the ER, with some doctor shoving his finger where the sun don't shine, trying to see if he could feel why I was in so much pain. By my senior year of high school, the pain was unlike anything I had ever felt in my life. Walking was unbearable and sleep was nearly impossible. I could no longer lay flat, so I had to sit up in bed and wait until I passed out from exhaustion to get any rest. This lasted until my first year of college when I went to see an Orthopedic doctor and ask for a MRI. Upon that visit, he first asked me how I heard about MRI's and second, proceeded to tell me "it's not going to show anything, but I will do it just to shut you up". Well, the rest is history. I was called right after the MRI, by (a very panicked) him, to inform me that all the pain I had been suffering from, the pain that made me contemplate taking my own life, was due to a tumor in my lower lumbar. I was shortly contacted by a neurosurgeon to schedule a meeting to discuss surgery.
4)
Could you describe, in whatever detail possible,
what kind of surgical treatment was performed on your Schwannoma, and if you
would consider it successful?
I had my first surgery in January of 1995. The surgery took a little over 8 hours. I had a laminectomy and removal of what was thought to be the whole tumor. I spent a week in the hospital on a morphine drip, which hardly did anything for the pain. I had paralysis down the front of my right leg (foot drop) and my bladder and bowels were also paralyzed (considered dead). So, at the age of 18, I had to learn how to self cath, which I picked up before I even left the hospital. I also became laxative dependent due to the paralysis of my bowels. It took a good 6 months to fully gain my strength back and I even built up the strength in my right leg, so I no longer had foot drop. Given everything I had been left to deal with, I considered the surgery to be a success because the horrific pain I felt for so many years was finally gone. However, 4 years later, my pain returned and the tumor had regrown from cells that were left over. I had my second surgery in 1999 during my Masters program in college. I was very eager to graduate on time because I was in an accelerated 10 month Masters Program. I had the surgery during Christmas break, and was back to school and my internship 2 weeks later (yes, that was pushing it, but I did what I had to do). A short 3 years after that surgery, the tumor regrew again and was also growing in the sciatic nerve to my right leg. I had my third surgery in 2002, and my neurosurgeon was extra aggressive at trying to remove all the cells, but without the cost of paralyzing me. My recovery time was about 4 months and I now suffered from chronic pain due to Adhesive Arachnoiditis, caused from the surgeries. It has been 11 years since my last surgery, so I would consider it a success, even though I due suffer from chronic pain. Also, I have trained my muscles to release my bladder, since my nerves are paralyzed, and I no longer have to straight cath. My Urologist said he has never seen anyone do that before, but since it has been working for me, to continue doing it. I am aware that maybe one day, I may have to go back to straight cathing, if I can no longer have the same results with my muscles due to age or other factors. I'll cross that bridge when I come to it...
5)
Having gone through the experience, what do you
think are the most critical questions for someone to ask their doctor about
surgery and treatment of this kind of schwannoma?
As far as questions to ask your doctor about this type of surgery, I really don't know. He can tell you what could happen, but until the surgery is performed, no one knows what the outcome will be until you wake up. That is just the nature of this beast.
6)
Can you describe what the recovery process was
like for you – if you feel you have made
a positive recovery…and what things you have done that have been of most help
to you?
With each surgery, the recovery process was pretty much the same. Lots of rest in the beginning, and then slowly pushing yourself to do more every day.
7)
Are you able to do all or most the things you
did before?
Yes, I am able to do everything I did before, but, sometimes with consequences. I realize that if I push myself too hard, my pain is going to flare up (sometimes severely), especially down my right leg. Also due to the paralysis in my bladder, if I do any type of jumping, especially on a trampoline, I know to wear some kind of protection. With all this said and everything I've been through, I'm just happy to be alive...
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