Cervical Schwannoma and Surgery in Less than Two Weeks!
Sept 26, 2013 10:29:12 GMT -6
robind likes this
Post by mat on Sept 26, 2013 10:29:12 GMT -6
Hello all,
Three years ago my left ear kept feeling numb. The feeling would come and go throughout the day. Immediately I thought that I must have a brain tumor and rushed to my doctor. He had never heard of any such a complaint and quickly set me up with an MRI of the brain and a consult with a neurologist. The MRI came back clear, so the neurologist scheduled a second one, with contrast, which also came back fine. He told me the condition was most certainly benign and sent me on my way.
However, I continued to experience the sensation of my ear falling asleep--sometimes the "pins and needles" feeling would become so intense that it would burn and ache, but I put up with it thinking it was just sore muscles (silly me). Then, in that very same area (three years later) I had a case of shingles, which proved terribly painful, and later I felt a strange lump in my neck. I finally went to an ENT who scheduled a CT scan of my neck and found a "subtle finding." He said he had no idea what it was, but told me that I would need a neurosurgical consult and an MRI. I felt crushed, terrified I had cancer. I didn't think the CT scan would find anything more than a reactive lymph node.
Thankfully, I got into see a neurologist he recommended that very day, and she set me up with an MRI that very afternoon, but it took three agonizing days to get the results. Finally, I had an answer: a nerve sheath tumor (most likely a schwannoma and most likely benign) between c2 and c3 extending along the third cervical nerve. It was big--5.4 cm. The third cervical nerve doesn't actually do all that much: it just provides some sensation to the ear, back of the skull and lower jaw, and is one of several nerves that innervate the diaphragm. The real problem was that the tumor was so large that it was pushing my vertebrae apart, pressing on my vertebral artery, and displacing my spinal cord. My neurologist recommended I see the chief of neurosurgery at the teaching hospital where I live. He said that it would take two surgeries to remove, first a posterior approach to remove it from the spine, and then an anterior approach to remove it from the from my neck. (The tumor is so large that it's dumbbell shaped--half in the spine and the other half in my neck.)
For a second opinion, I traveled to Johns Hopkins to see a surgeon (Dr. Belzberg) who specializes in peripheral nerve tumors and does these surgeries every week. He gave me pretty much the same recommendation, although he wanted also to do a fusion as well. While my wife thinks I'm crazy, I think I want to stay local. I know so many of the doctors and nurses in town and they all tell me that the chief of neurosurgery here is as good as they come--he is also an expert in the cranial-vertebral junction, which is exactly where my tumor is located. Around here, he takes only the most difficult cases that other doctors won't touch. I also know the Chief of Staff of the hospital and so they treat me very well, answer all my questions, and pay attention to all my concerns. The folks at Johns Hopkins mostly ignore me, except for the constant automated calls to my cell phone to tell me that I have a $200 self-pay balance that I owe, the bill for which arrived just one day before the calling started.
My surgery is now less than two weeks away on Oct. 8. The Dr. will perform a partial laminectomy, a unilateral facetectomy, and will remove the tumor from my spine. He does not plan to do a fusion. He tells me that he will make every effort to preserve the nerve, if possible. Then, sometime later, I'll have a second surgery to remove the remaining portion with an anterior approach through the left side of the front of my neck.
Amazingly, I have had very little pain. The doctors tell me that I have had the tumor for a very long time and my body has essentially adapted to it. (I'm a 41 year old male, in pretty good health.) Were it not for the fact that it is displacing my spinal cord and pressing out into the front of my neck, I could probably just leave it alone. I'm hoping that, since I'm not in pain now and have all my motor functions intact, I'll be no worse than I am now, post-op. I do however have a lot of muscle twitching, brisk reflexes and urinary and bowel urgency, for which I've had for many years. I'm hoping all that resolves when my spinal cord gets a little more breathing room.
Wish me luck. I'll let the forum know how my surgery goes! And sorry about the long post!
Mat
Three years ago my left ear kept feeling numb. The feeling would come and go throughout the day. Immediately I thought that I must have a brain tumor and rushed to my doctor. He had never heard of any such a complaint and quickly set me up with an MRI of the brain and a consult with a neurologist. The MRI came back clear, so the neurologist scheduled a second one, with contrast, which also came back fine. He told me the condition was most certainly benign and sent me on my way.
However, I continued to experience the sensation of my ear falling asleep--sometimes the "pins and needles" feeling would become so intense that it would burn and ache, but I put up with it thinking it was just sore muscles (silly me). Then, in that very same area (three years later) I had a case of shingles, which proved terribly painful, and later I felt a strange lump in my neck. I finally went to an ENT who scheduled a CT scan of my neck and found a "subtle finding." He said he had no idea what it was, but told me that I would need a neurosurgical consult and an MRI. I felt crushed, terrified I had cancer. I didn't think the CT scan would find anything more than a reactive lymph node.
Thankfully, I got into see a neurologist he recommended that very day, and she set me up with an MRI that very afternoon, but it took three agonizing days to get the results. Finally, I had an answer: a nerve sheath tumor (most likely a schwannoma and most likely benign) between c2 and c3 extending along the third cervical nerve. It was big--5.4 cm. The third cervical nerve doesn't actually do all that much: it just provides some sensation to the ear, back of the skull and lower jaw, and is one of several nerves that innervate the diaphragm. The real problem was that the tumor was so large that it was pushing my vertebrae apart, pressing on my vertebral artery, and displacing my spinal cord. My neurologist recommended I see the chief of neurosurgery at the teaching hospital where I live. He said that it would take two surgeries to remove, first a posterior approach to remove it from the spine, and then an anterior approach to remove it from the from my neck. (The tumor is so large that it's dumbbell shaped--half in the spine and the other half in my neck.)
For a second opinion, I traveled to Johns Hopkins to see a surgeon (Dr. Belzberg) who specializes in peripheral nerve tumors and does these surgeries every week. He gave me pretty much the same recommendation, although he wanted also to do a fusion as well. While my wife thinks I'm crazy, I think I want to stay local. I know so many of the doctors and nurses in town and they all tell me that the chief of neurosurgery here is as good as they come--he is also an expert in the cranial-vertebral junction, which is exactly where my tumor is located. Around here, he takes only the most difficult cases that other doctors won't touch. I also know the Chief of Staff of the hospital and so they treat me very well, answer all my questions, and pay attention to all my concerns. The folks at Johns Hopkins mostly ignore me, except for the constant automated calls to my cell phone to tell me that I have a $200 self-pay balance that I owe, the bill for which arrived just one day before the calling started.
My surgery is now less than two weeks away on Oct. 8. The Dr. will perform a partial laminectomy, a unilateral facetectomy, and will remove the tumor from my spine. He does not plan to do a fusion. He tells me that he will make every effort to preserve the nerve, if possible. Then, sometime later, I'll have a second surgery to remove the remaining portion with an anterior approach through the left side of the front of my neck.
Amazingly, I have had very little pain. The doctors tell me that I have had the tumor for a very long time and my body has essentially adapted to it. (I'm a 41 year old male, in pretty good health.) Were it not for the fact that it is displacing my spinal cord and pressing out into the front of my neck, I could probably just leave it alone. I'm hoping that, since I'm not in pain now and have all my motor functions intact, I'll be no worse than I am now, post-op. I do however have a lot of muscle twitching, brisk reflexes and urinary and bowel urgency, for which I've had for many years. I'm hoping all that resolves when my spinal cord gets a little more breathing room.
Wish me luck. I'll let the forum know how my surgery goes! And sorry about the long post!
Mat
