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1) How old were you at the time of your diagnosis?
That’s a kinda complicated question in my case. Allow me to tell a bit of backstory. I was a junior in high school in 2001 when I first noticed a twinge in the outer thigh of my left leg. I didn’t think anything of it until it continued. So upon feeling the area I noticed there was a small nodule there about the size of an M&M. Whenever I touched it the right way it would shoot a sensation like electricity throughout my leg. I asked my family doctor and he felt it but didn’t think it was anything serious. He was a good doctor, but told me as long as it wasn’t growing the best thing to do would be to leave it alone. I was satisfied with the answer as it was more of a nuisance than anything else.
Flash forward a few years to 2005. I was at work atop a ladder lifting a box filled with office electronics I felt a familiar twinge but this time on the right side of my neck. I put the box up and felt. Sure enough there was the same M&M size nodule. Same sensation. The realization that there was another of those growths in my body filled me with dread. I had dealt with the one on my leg but this one seemed different. Over the next several months I found out just how different this one was. The size stayed the same, just like the one on my leg, but the pain was so much worse. It got to where I had to take an over the counter(not a controlled drug) pain pill every morning because it was pretty much a given that it would plague me at some point during the day.
The pain wasn’t always bad. Some days the nodule wouldn’t give me any trouble at all and would allow me to live my life like normal. But other days it would remind me just how much sway it held over my body, especially my right arm. Finally when I knew these things weren’t going away on their own I decided to take what steps I could to get rid of them..at least the one in my neck. I couldn’t live like that for the rest of my life.
So in 2006 at the age of 22 I went to an ENT(ear, nose and throat) doctor. He ordered an ultrasound which showed there was a nodule in my neck, but apart from that, nothing. He said it could be a swollen lymph node or a tumor, most likely benign. He referred me to an orthopedic who was apparently very good with tumors on the neck.
The orthopedic checked me out and told me it could be something called a schwannoma tumor. I thought, “Never heard of one of those before.” But to get a definitive answer he needed a biopsy. If it was a schwannoma he told me he could remove it. Music to my ears.
Let me preface this next part. I tend to be a positive person. I rejoice in the life my God has given me and I’m thankful for all of the grace he gives me, none of it deserved. My life hasn’t been all sunshine and roses, but for the most part I’ve never had very many dark days. So when I tell you what happened next was the single worst experience in my life, I mean it.
I went to the biopsy appointment. I’m not afraid of needles. I don’t like getting shots, but I’m not crippled by the thought of them. So I wasn’t dreading it or anything. They gave me something to numb the area in my neck and then they got the biopsy needle out and took the plunge. Do you know when people say “That struck a nerve”…I know why they say that. As soon as the needle touched the nodule I lost control of my body as it seized. It felt like the nerve was a guitar string and when they plucked it with the needle the string resonated throughout my body. I could feel it to my toes. Seeing my extreme discomfort the two medical staff members who were conducting the procedure paused. They were sympathetic to the torture I was going through, but knew they needed the biopsy. So I gritted my teeth and did the best I could as they pushed on. But I couldn’t take it. It felt like I was being shocked over and over again every time they touched the growth. I finally told them I couldn’t handle it anymore and they left me in the room to compose myself. I was still tense when I was walking through the hallway to the parking garage and the automatic door began to close before I had a chance to get through. I cowered in fear of something touching me again before I even knew what had happened. I’d never felt such a primitive reaction to fear before in my life.
The ENT doctor told me(surprise!) they didn’t get enough tissue from the biopsy to be conclusive. Based on the way he told me he was aware of the torture I was put through. He said the only option we had left was to do the surgery. The ENT would start the surgery and if the growth was a lymph node he would remove it, but if it was a schwannoma he would call the orthopedic while I was still under anesthesia.
I really wasn’t nervous about the surgery. I was excited at the prospect of not being in pain anymore. Precautionary tests were done to make sure I was healthy enough for the surgery and everything came back fine. The day finally arrived and I went under. I was so eager to find out what in the world was on my neck. The nurses wheeled me back to the operating room and strapped my arms to the side in a sort of horizontal crucifix position. They put an adapter on the bed under my head to turn my head to the side and expose it on the right side. They told me I would soon be asleep.
I started to come to. I vaguely remember the ENT being in the recovery room when I woke up. The first thing I mumbled out of mouth was, “What was it?” The ENT told me it was a schwannoma. So to answer the question, I was 22 when I was diagnosed. But the doctor told me it was gone now. It was gone and I was relieved.
I found out after the surgery that there was a big scare at the hospital while I was under. All patients and medical personnel were evacuated for about an hour when a fire alarm went off. It was set off by some smoke from two electrical motors overheating. The only people left in the building were those who were in surgery. Someone told my parents, who must have been terrified, that the surgery was going fine and the doctors had a way out if something happened.
The ENT told me the orthopedic had to remove about 10% of the nerve of my brachial plexus where the schwannoma was located. Looking at diagrams now it was probably the upper trunk of the brachial plexus and it was only just below the skin, which must be why it was so sensitive.
So that was one schwannoma down. I still have the one in my leg but at the moment the pain is manageable. When it gets to the point that I need to have it removed I’ll seek a doctor who has a history of removing schwannomas.
2) Do you have any history of Schwannomas in your family?
Not that I’ve ever heard of.
3) Where was your Schwannoma located? And what were the symptoms that lead to your diagnosis?
The right side of my neck, a little above my collar bone. The symptoms started as a tingling sensation but eventually it was painful and couldn’t be touched or bumped, which would lead to my whole body tensing up and pain in my neck and right arm.
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? (Or describe what you may know about the surgery that may yet be performed, if you haven't been operated on yet)
My surgery was successful and nothing ever resurfaced. I don’t really know many details about how they removed it. I think I remember them saying something about a robotic device that helped the doctor with his precision.
I still feel a little bump about half the size of the schwannoma. It’s most likely scar tissue but it’s a little sensitive, probably because it’s near the nerve. I just hope and pray it isn’t the schwannoma coming back. But I don’t think it’s coming back.
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?
I would ask if the doctor has ever performed surgery to remove a schwannoma. My doctor(the orthopedic) assured me he knew what he was doing and that added so much comfort to a very scary situation. Ask if there will be any long term issues after the surgery. And ask the chances of the schwannoma returning.
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? (Also, you are free to describe what doctors tell you to expect from your recovery if you haven't been in surgery yet)
The recovery was really a breeze. I only had minimal pain the first few days after the surgery. They told me not to lift heavy objects for several weeks, but eventually I was able to lift pretty much everything I could before the surgery. The details of my issues with lifting are described in the next answer.
7) Are you able to do all or most the things you did before? (Also feel free to describe your abilities even if you are still living with the tumor or tumors)
I’ve noticed that I can’t bowl more than a couple of games or my neck really hurts the next day. I don’t even do that very often, so it isn’t a huge deal.
More of an issue in recent days is that I’m not able to hold my 14-month-old daughter for very long. This week I had to take her to the doctor and didn’t want to put her down where she could get germy. I could tell my neck was beginning to hurt so I asked a family member to hold her some of the time. That helped a lot but for the next few days I couldn’t hold her with my right arm for very long at all. It isn’t quite the same feeling as a pulled muscle but I guess it’s similar. It’s a very dull, deep ache along the nerve where the tumor had been attached. But I’m more than happy to deal with this discomfort as long as the schwannoma is gone for good.
