Welcome to the blog of Schwannoma Survivors and Schwannoma Fighters! This blog is meant to be a complimentary page for discussion of issues related to Schwannoma tumors. As some of you know, I am the survivor of a large Schwannoma tumor inside my spinal cord that was discovered and removed in 2009. I have had a good recovery - not a painless one by any stretch, but I'm strong and I'm back to running and doing most the things that I've always loved.
Since I would like this blog to be firsthand stories and useful tips on both living with and living past Schwannomas, I thought an interesting first blog would be one in which we address the question of how different a Schwannoma feels when compared with normal back pain. (I am not a doctor, and none of what I write should EVER be considered without the consultation of your medical doctor - but I did have the experience, and I will offer my impressions if they may be of benefit to anyone who needs to know.)
I remember that it was sometime around the middle of 2007 that I began to need to take two Aleve pills before bed every night. Otherwise, I'd normally be awake at least once or twice a night with back pain. Around that time I went to see a doctor (I won't name him but he is no longer my physician) complaining of back pain. Frankly, he looked at me like buddy I've heard all this moaning a million times before. He was quite certain it was good old fashioned lower back pain, the kind that we all have from time to time. He gave me some ibuprofens the size of my fist and sent me on my way. I asked him, after beginning to experience significant pain - if we should not arrange some scans to check out my lower back or my kidney. The pain would be horrible at times, and it shot right into the area of my left kidney - making me wonder if there was something wrong there. He brushed that aside - as he had brushed aside my previous concerns, and I remember telling him "Look, I know something is going on here. I stretch, I rest, I do yoga - I'm very flexible, but I can't stretch out that pain and it NEVER goes away." He just stared at me blankly. Most of what I had heard about people experiencing sciatica problems and other disc issues told me that that kind of pain could be relieved or moderated by lying down - thus reducing the load of gravity on the discs in your back. This didn't work for me. The hot spot of pain was always there, and it did not go away or lessen while lying down. Frequently it got worse while lying down.
By mid 2008 I my balance was starting to go, and I remember a trip with my wife to New York City, where I noticed that I had a great deal of trouble going up and down the steps of NYC subway stations. On flat ground I was ok, but my knees had begun to buckle and balance was a constant issue. Eventually, in late 2008 and early 2009, I had such agonizing pain that I had to sleep sitting up in a chair in my art studio. Lying down flat was just a lesson in misery. Plenty of nights I'd lie there in tears, with no letup in the pain - and so tired I thought I was going to go crazy. And another bad signal was that I was needing stronger medication just to function. The pain level was reaching a critical point. Then in early 09 came the nausea. Another huge signal, constant upset stomach and nausea as I withered down to about 188 pounds (I was commonly around 210 to 220 most of my life).
At some point my first doctor had me convinced that it was all in my head. I said to myself that this is just back pain. I'm just feeling what other people were feeling. All the while a tumor was growing inside my spinal cord, and things got worse and worse.
So in short, if I am to answer the question of how a Schwannoma in the spine feels different than disc problems or common backaches - I would answer in a few parts. 1.) I could not stretch out or completely relieve the pain at any time. It was always present, standing or lying down. 2.) Nausea and buckling knees were a bad sign. 3.) The need for constant medication just to be able to function in a basic way told me that something was not getting any better. The progression of the pain, the increasing loss of balance and weakness in my legs meant, whatever it was, was getting worse and it was serious. I knew that at the time, but I had no idea what was causing it...
Lesson learned? Take yourself seriously. You are not being a hypocondriac if you sense a very painful progression in your condition - such as what I described above. Other lesson learned, doctors are very intellgent people - but you should never let the fact that so many people have back pain diminish your concern for yourself and your health. Be persistent and don't stop till you get an answer. If you find you have sciatica or disk problems - then you'll know. But listen to your body and be your own advocate.
Please feel free to visit the Facebook page of "Schwannoma Survivors & Schwannoma Fighters" at: https://www.facebook.com/SchwannomaSurvivorsSchwannomaFighters
(Disclaimer: advice shared on this blog or on our related Facebook page can not be a replacement for proper medical treatment by a trained physician. Speak with a Doctor before making any medical decisions.)
