Post by terry on Feb 25, 2016 17:37:18 GMT -6
I recently joined this board and would appreciate anyone correcting my understanding of the treatment of nerve sheath tumors. My situation is as follows:
I have a nerve sheath tumor at the right L2-L3 neural foramen along the L2 nerve which may be a schwannoma. This tumor could be the “pain generator” for the pain that radiates down my right thigh. The thing that complicates my situation is that there is an alternate belief that the reason I have this pain is due to nerve impingement at L4 [if this is true, it is likely from degenerative disc disease]. I would think that it would be possible to differentiate between pain originating at L2 vs. L4 given the location of my pain but my doctors seem to think that if the pain is primarily on the SIDES of my thigh, it’s not typical for a L2 nerve. The pain has never radiated below my knee. I have had this pain for at least 5 years but it has gotten much worse over time. My right leg seems to be only a little weaker than my left leg.
The tumor now measures 4.3 cm x 1.3 cm x 2.3 cm and is described as a fusiform, multilobulated mass. I am primarily on Motrin and Gabapentin to manage the pain. My neurologist [who I trust and like] has taken a wait and sees approach for the last 7 months. She believes that the tumor has remained “stable”. I believe from her point of view, pain is not an important reason to treat this tumor. From my point of view, pain is a VERY important reason to treat this tumor because if it grows too large, I could find myself with intractable pain [and probably other symptoms] while now I at least have some good periods where pain does not dominate my consciousness.
But here is the crux of this post: if this tumor is treated by either radiation [Cyber Knife “surgery”] OR spinal surgery, my neurosurgeon indicated that it is unlikely to reduce the amount of pain I am presently experiencing. In fact, either treatment will likely result in my feeling much worse in the short term. This is another thing she pointed out: neither treatment is likely to get rid of the tumor completely. So, in my mind, any treatment which is offered [either radiation OR surgery] will only SLOW down the growth of the tumor. Further, given the risks of either treatment, I could clearly be worse off with treatment. So my question is: why would anyone consider treatment if there was so little benefit AND there could be some serious risk? The risk to benefit ratio does not seemed skewed in favor of choosing treatment. Of course since I belong to a “managed health care plan” perhaps the doctors tend to discourage treatment because it’s so expensive? I would appreciate any thoughts you may have on this conundrum. Terry
I have a nerve sheath tumor at the right L2-L3 neural foramen along the L2 nerve which may be a schwannoma. This tumor could be the “pain generator” for the pain that radiates down my right thigh. The thing that complicates my situation is that there is an alternate belief that the reason I have this pain is due to nerve impingement at L4 [if this is true, it is likely from degenerative disc disease]. I would think that it would be possible to differentiate between pain originating at L2 vs. L4 given the location of my pain but my doctors seem to think that if the pain is primarily on the SIDES of my thigh, it’s not typical for a L2 nerve. The pain has never radiated below my knee. I have had this pain for at least 5 years but it has gotten much worse over time. My right leg seems to be only a little weaker than my left leg.
The tumor now measures 4.3 cm x 1.3 cm x 2.3 cm and is described as a fusiform, multilobulated mass. I am primarily on Motrin and Gabapentin to manage the pain. My neurologist [who I trust and like] has taken a wait and sees approach for the last 7 months. She believes that the tumor has remained “stable”. I believe from her point of view, pain is not an important reason to treat this tumor. From my point of view, pain is a VERY important reason to treat this tumor because if it grows too large, I could find myself with intractable pain [and probably other symptoms] while now I at least have some good periods where pain does not dominate my consciousness.
But here is the crux of this post: if this tumor is treated by either radiation [Cyber Knife “surgery”] OR spinal surgery, my neurosurgeon indicated that it is unlikely to reduce the amount of pain I am presently experiencing. In fact, either treatment will likely result in my feeling much worse in the short term. This is another thing she pointed out: neither treatment is likely to get rid of the tumor completely. So, in my mind, any treatment which is offered [either radiation OR surgery] will only SLOW down the growth of the tumor. Further, given the risks of either treatment, I could clearly be worse off with treatment. So my question is: why would anyone consider treatment if there was so little benefit AND there could be some serious risk? The risk to benefit ratio does not seemed skewed in favor of choosing treatment. Of course since I belong to a “managed health care plan” perhaps the doctors tend to discourage treatment because it’s so expensive? I would appreciate any thoughts you may have on this conundrum. Terry
