Post by slackjaw on Mar 6, 2011 17:00:44 GMT -6
Greetings everyone... I'm glad to find this resource as I am suddenly faced with the dauntng prospect of surgery to resect a Cavernous Malformation within my spinal cord. This, after being misdignosed as a demyelinating disease 24 years ago!
I will start from the beginning. It was 1987, I was 21 years old. I was painting houses at the time and moving large extension ladders around, and thought I had just strained myself when I started having radial pain around my ribcage. It felt like my ribs were going to pop out of my chest every time I took a breath. This went away after a couple of weeks, but about 3 months later, the pain came back. After a week, I had numbness start on my left side, and 3 days later I was completely paraplegic. For a whole month, no one could tell me what the hell had happened, or if I would even walk again. They finally settled on a diagnosis of "Transverse Myelitis", and sent me off to the UW for rehab. I didn't start improving until then. Two months from the initial event I was standing again. After 3 months hospitalization, I was let out Dec. 3rd in a wheel chair. I never got back in it, and told myself I'd be off crutches by Christmas, so that's what I did.
I was as fully recovered as I would get, 6 months after the first episode. 65% recovery on the left side, and no noticeable deficit on the right. However, since then I have had to deal with bladder and bowel issues. Besides the left side numbness, I was left with a semi-radial band of numbness *and* heightened sensation around my left mid-section.
I had my next episode in 1994, which was relatively minor. I refused further testing as I had already been tested for everything under the sun while I was in the hospital... and I thought I had an incurable condition, so why bother? This one did not leave me functionally changed anyway.
Next hit... 1997. This time I had significant radial pain again, with a sense of pressure in the middle of my back, just as I had before I went paraplegic 10 years earlier. I promptly went in for IV steroid treatment, which seemed to help some, but I was now slightly more impaired. The only thing noticeable on the right at this point, was the beginning of that irritating midsection feeling. Right leg was still fine.
2004. This time was quite different... it began with a warm sensation on my entire right side, below the banding point of my midsection. Over the course of a year, I suffered a slow progression of right side impairment. My calf went to feeling like someone was constantly rubbing sandpaper on it. No one ever noticed my condition outwardly until after this started. Spatial awareness had long been gone on my left side, but with the other side starting to go, it became increasingly difficult to maintain balance. I did not go in for treatment until 8 months into it... when I started having pressure sensations in my lower back. When I went back to UW, I let them do a full CNS MRI to see how this was progressing, as after one episode, it's basically considered MS. However... I never heard back on the results of this scan! I figured no news is good news; nothing could be done for my condition anyway.
Which brings us to the here and now. At the end of January, I woke up feeling more pins-and-needles on my right foot than normal. Over the course of two days, I had greatly diminished sensation on my right side, and now walking was suddenly a LOT more difficult. I was totally freaking out not knowing how far it would go, so I high tailed it back to the UW for immediate steroid treatment. Well, I brought up the previous scan, so we had a look. Absolutely NO indication of any plaques that would be associated with a demyelinating event... and a clearly visible lesion at T6. Needless to say, I did not get the IV steroids.
So I finally have a proper diagnosis... intramedullary cavernous malformation of the spinal cord. The periodic hemorrhaging episodes, in my case every five to seven years, have been the cause of my step-wise deterioration after recovery from acute onset and paraplegia 24 years ago.
I am scheduled for surgery March 21st...
I will start from the beginning. It was 1987, I was 21 years old. I was painting houses at the time and moving large extension ladders around, and thought I had just strained myself when I started having radial pain around my ribcage. It felt like my ribs were going to pop out of my chest every time I took a breath. This went away after a couple of weeks, but about 3 months later, the pain came back. After a week, I had numbness start on my left side, and 3 days later I was completely paraplegic. For a whole month, no one could tell me what the hell had happened, or if I would even walk again. They finally settled on a diagnosis of "Transverse Myelitis", and sent me off to the UW for rehab. I didn't start improving until then. Two months from the initial event I was standing again. After 3 months hospitalization, I was let out Dec. 3rd in a wheel chair. I never got back in it, and told myself I'd be off crutches by Christmas, so that's what I did.
I was as fully recovered as I would get, 6 months after the first episode. 65% recovery on the left side, and no noticeable deficit on the right. However, since then I have had to deal with bladder and bowel issues. Besides the left side numbness, I was left with a semi-radial band of numbness *and* heightened sensation around my left mid-section.
I had my next episode in 1994, which was relatively minor. I refused further testing as I had already been tested for everything under the sun while I was in the hospital... and I thought I had an incurable condition, so why bother? This one did not leave me functionally changed anyway.
Next hit... 1997. This time I had significant radial pain again, with a sense of pressure in the middle of my back, just as I had before I went paraplegic 10 years earlier. I promptly went in for IV steroid treatment, which seemed to help some, but I was now slightly more impaired. The only thing noticeable on the right at this point, was the beginning of that irritating midsection feeling. Right leg was still fine.
2004. This time was quite different... it began with a warm sensation on my entire right side, below the banding point of my midsection. Over the course of a year, I suffered a slow progression of right side impairment. My calf went to feeling like someone was constantly rubbing sandpaper on it. No one ever noticed my condition outwardly until after this started. Spatial awareness had long been gone on my left side, but with the other side starting to go, it became increasingly difficult to maintain balance. I did not go in for treatment until 8 months into it... when I started having pressure sensations in my lower back. When I went back to UW, I let them do a full CNS MRI to see how this was progressing, as after one episode, it's basically considered MS. However... I never heard back on the results of this scan! I figured no news is good news; nothing could be done for my condition anyway.
Which brings us to the here and now. At the end of January, I woke up feeling more pins-and-needles on my right foot than normal. Over the course of two days, I had greatly diminished sensation on my right side, and now walking was suddenly a LOT more difficult. I was totally freaking out not knowing how far it would go, so I high tailed it back to the UW for immediate steroid treatment. Well, I brought up the previous scan, so we had a look. Absolutely NO indication of any plaques that would be associated with a demyelinating event... and a clearly visible lesion at T6. Needless to say, I did not get the IV steroids.
So I finally have a proper diagnosis... intramedullary cavernous malformation of the spinal cord. The periodic hemorrhaging episodes, in my case every five to seven years, have been the cause of my step-wise deterioration after recovery from acute onset and paraplegia 24 years ago.
I am scheduled for surgery March 21st...