Post by Sugarloafer on Nov 30, 2014 20:00:48 GMT -6
I should say that I was 90%+ diagnosed with Intramedullary SCT. A lesion was discovered in my cervical spine between C5-C6 (now C5-C7) October 1st. I had been experiencing progressive weakness in my left leg first, then numbness and tingling in my hands, increasing weakness in both legs and intensifying numbness and tingling in hands, arms, legs and feet. I can still walk, for the time being, but stairs are becoming a problem and I am having difficulty typing with my right hand and also signing my name.
I have been bounced back and forth in Michigan (Detroit area) between Neurosurgeons and neurologists. At first glance, they thought it was either Transverse Myelitis or Neuromyelitis Optica. A three day stay in hospital pretty much ruled that out. When it was suggested I might have some sort of fistula (the MRIs didn't look at all like that), I called MD Anderson in Houston, sent them all my records and was asked to visit with them, which I did last week. They said no way on the fistula and gave me the 90%+ diagnosis. Further, after a CT from neck to pelvis that came out perfectly clear, it looks to be a primary one. I actually found myself in the incredulous position of hoping I had cancer elsewhere so they would know how to treat this spinal cord tumor!
They are very reluctant to do a biopsy right now feeling that they would "virtually guarantee" to make me worse, physically, up to possible paralysis. I am a VERY active (technical scuba diver, big exerciser, bicycle rider, etc., etc.) 60 year old male and the thought of my degenerative process being advanced by as much as a year, which is what I was told was very possible, is quite daunting. But, the way I am deteriorating, I will almost guarantee I will be in a wheelchair in a lot less than a year. I was told they did not know what type of tumor it is, other than a glioma. But the surgeon said that he can tell in the MRI that there is no "plane of cleavage," which would lead me to think astrocytoma?? But he said that they do not want to do radiation therapy, also due to the fact that they are not certain what type of tumor it is. And, supposedly chemo is not effective.
So, I am being advised to sit and wait for a bit. I have another visit at Anderson in January at which time they are doing a bank of MRI's including a "Spectroscopy" or something like that. What concerns me is that while I am waiting I am becoming more and more impaired almost daily. I continue to work out on an elliptical machine and exercise my hands to keep my strength up in them, but my ability to walk, especially climbing stairs, is really deteriorating. So, I am a bit frustrated, putting it mildly. I have confidence in the group at MD Anderson, but nonetheless am considering any and all options. I sent my records to Sloan Kettering just recently as well.
Does anyone out there have any thoughts? I was so happy to see there are other people who have gathered together in a "community" of sorts to discuss this. Makes me feel that I'm not exactly alone, regardless of how rare this is. (Why the hell couldn't I have hit the lottery??!!)
Thanks.
I have been bounced back and forth in Michigan (Detroit area) between Neurosurgeons and neurologists. At first glance, they thought it was either Transverse Myelitis or Neuromyelitis Optica. A three day stay in hospital pretty much ruled that out. When it was suggested I might have some sort of fistula (the MRIs didn't look at all like that), I called MD Anderson in Houston, sent them all my records and was asked to visit with them, which I did last week. They said no way on the fistula and gave me the 90%+ diagnosis. Further, after a CT from neck to pelvis that came out perfectly clear, it looks to be a primary one. I actually found myself in the incredulous position of hoping I had cancer elsewhere so they would know how to treat this spinal cord tumor!
They are very reluctant to do a biopsy right now feeling that they would "virtually guarantee" to make me worse, physically, up to possible paralysis. I am a VERY active (technical scuba diver, big exerciser, bicycle rider, etc., etc.) 60 year old male and the thought of my degenerative process being advanced by as much as a year, which is what I was told was very possible, is quite daunting. But, the way I am deteriorating, I will almost guarantee I will be in a wheelchair in a lot less than a year. I was told they did not know what type of tumor it is, other than a glioma. But the surgeon said that he can tell in the MRI that there is no "plane of cleavage," which would lead me to think astrocytoma?? But he said that they do not want to do radiation therapy, also due to the fact that they are not certain what type of tumor it is. And, supposedly chemo is not effective.
So, I am being advised to sit and wait for a bit. I have another visit at Anderson in January at which time they are doing a bank of MRI's including a "Spectroscopy" or something like that. What concerns me is that while I am waiting I am becoming more and more impaired almost daily. I continue to work out on an elliptical machine and exercise my hands to keep my strength up in them, but my ability to walk, especially climbing stairs, is really deteriorating. So, I am a bit frustrated, putting it mildly. I have confidence in the group at MD Anderson, but nonetheless am considering any and all options. I sent my records to Sloan Kettering just recently as well.
Does anyone out there have any thoughts? I was so happy to see there are other people who have gathered together in a "community" of sorts to discuss this. Makes me feel that I'm not exactly alone, regardless of how rare this is. (Why the hell couldn't I have hit the lottery??!!)
Thanks.
