Post by travis on Apr 17, 2017 1:43:05 GMT -6
Hello Everyone,
My name is Travis and I decided to share my story in hopes that it might help someone else in the future.
I was diagnosed with a spinal schwannoma at C3 - C4. My ENT said it was the largest one she had ever seen. The tumor was so large that it was causing curvature of the spine and you could see the lump on the side of my neck. Before the surgery, if someone touched my neck, the pain was so intense it would immobilize me.
I underwent two operations, one with neurosurgery and another with Ontarology. Neurosurgery removed the portion that had attached to the sack and grown into the vertibrae. I was on the operating table 12 hours.
When I woke up, I was in more pain than I have ever experienced in my life, and I have a fairly high tolerance for pain. For days, I couldn't stop screaming, the pain was off the charts and they couldn't give me more pain medication than they had already given me. They actually called security on me and threatened to kick me out of the hospital because I was disturbing other guests. Like I had the ability to just turn off the pain or something. On the third day the pain was somewhat manageable.
After about a week in bed, physical therapy forced me to a vertical position because I couldn't get up on my own. Around the 10th day after surgery, I could somewhat move around on my own with the assistance of a walker. I needed the walker for 3 additional weeks before I was able to walk on my own. Still get occasional vertigo to this day.
They scheduled the second surgery about 3 months later. ENT removed the second half of the tumor. Things went much better. I was able to walk out of the hospital on my own 3 days later.
Now, 5 months after the first surgery, I have a better understanding of how these surgeries have effected me. Since the tumor had grown over the left C3 nerve, I now have permanent sensation loss beginning at the top left and back of my skull, the left and back side of my neck, left trapezius, shoulder, left deltoid, left breast, top of the arm, and in my hand to my knuckles. Neurology did a nerve conduction study and confirmed this and noted that my shoulder was 9 degrees colder than the rest of my body.
My pain is still about a 3, although I get random shooting neurological pain in my head and neck that is about a 9. I have Allodynia on the back of my head, which makes shaving and light tapping painful. Loss of strength in the shoulder muscle and some limited range of motion and motor coordination in the left arm.
I have limited range of motion and pain in my neck whenever I turn my head, along with a popping and grinding sensation.
I wake up everyday with a stiffness in my neck, shoulder and arm. Norco and Lyrica help somewhat, but I still feel some pain. The meds don't do anything at all for the shooting neurological pain.
I'm just taking it day by day at this point and I'm thankful that the operations went well. Just got the results back from my most recent MRI and there appears to be some residual schwannoma. I haven't spoken to my doctor yet to find out what the plan is.
Anyway, if anyone has any questions for me, I'll be glad to answer them. Like I mentioned earlier, I'm here to help any way I can.
My name is Travis and I decided to share my story in hopes that it might help someone else in the future.
I was diagnosed with a spinal schwannoma at C3 - C4. My ENT said it was the largest one she had ever seen. The tumor was so large that it was causing curvature of the spine and you could see the lump on the side of my neck. Before the surgery, if someone touched my neck, the pain was so intense it would immobilize me.
I underwent two operations, one with neurosurgery and another with Ontarology. Neurosurgery removed the portion that had attached to the sack and grown into the vertibrae. I was on the operating table 12 hours.
When I woke up, I was in more pain than I have ever experienced in my life, and I have a fairly high tolerance for pain. For days, I couldn't stop screaming, the pain was off the charts and they couldn't give me more pain medication than they had already given me. They actually called security on me and threatened to kick me out of the hospital because I was disturbing other guests. Like I had the ability to just turn off the pain or something. On the third day the pain was somewhat manageable.
After about a week in bed, physical therapy forced me to a vertical position because I couldn't get up on my own. Around the 10th day after surgery, I could somewhat move around on my own with the assistance of a walker. I needed the walker for 3 additional weeks before I was able to walk on my own. Still get occasional vertigo to this day.
They scheduled the second surgery about 3 months later. ENT removed the second half of the tumor. Things went much better. I was able to walk out of the hospital on my own 3 days later.
Now, 5 months after the first surgery, I have a better understanding of how these surgeries have effected me. Since the tumor had grown over the left C3 nerve, I now have permanent sensation loss beginning at the top left and back of my skull, the left and back side of my neck, left trapezius, shoulder, left deltoid, left breast, top of the arm, and in my hand to my knuckles. Neurology did a nerve conduction study and confirmed this and noted that my shoulder was 9 degrees colder than the rest of my body.
My pain is still about a 3, although I get random shooting neurological pain in my head and neck that is about a 9. I have Allodynia on the back of my head, which makes shaving and light tapping painful. Loss of strength in the shoulder muscle and some limited range of motion and motor coordination in the left arm.
I have limited range of motion and pain in my neck whenever I turn my head, along with a popping and grinding sensation.
I wake up everyday with a stiffness in my neck, shoulder and arm. Norco and Lyrica help somewhat, but I still feel some pain. The meds don't do anything at all for the shooting neurological pain.
I'm just taking it day by day at this point and I'm thankful that the operations went well. Just got the results back from my most recent MRI and there appears to be some residual schwannoma. I haven't spoken to my doctor yet to find out what the plan is.
Anyway, if anyone has any questions for me, I'll be glad to answer them. Like I mentioned earlier, I'm here to help any way I can.