spinal cord atrophy questions

[marcn]

I had a very, very unusual injury about five years ago-a non-traumatically caused L1/L2 central disc herniation with mass effect on the thecal sac. It took until the onset of groin, saddle and foot numbness to get an MRI. I was lucky to get into surgery about 6 days after that, but apparently not quickly enough. diagnosis: conus medullaris syndrome. the MRI showed very significant conus compression.

I did well until about two years post-injury, then started to have a whole lot of trouble with my bowels, bladder and sexual functioning. I went to see two well thought of neurologists, who agreed that the MRI showed atrophy of the conus, with weird tapering at the end. I was told by one of the neurologists that my perception that things are getting worse is probably due to "creeping atrophy"-that sometimes the atrophy stops, sometimes it just keeps going.

Are there any treatment options out there? I'm at the point where I have almost no sexual sensation, have to constantly urinate, and have very poor bowel functioning. I was told there were really no options.

thanks, Marc.

[Wise Young]

Originally Posted by marcn

I had a very, very unusual injury about five years ago-a non-traumatically caused L1/L2 central disc herniation with mass effect on the thecal sac. It took until the onset of groin, saddle and foot numbness to get an MRI. I was lucky to get into surgery about 6 days after that, but apparently not quickly enough. diagnosis: conus medullaris syndrome. the MRI showed very significant conus compression.

I did well until about two years post-injury, then started to have a whole lot of trouble with my bowels, bladder and sexual functioning. I went to see two well thought of neurologists, who agreed that the MRI showed atrophy of the conus, with weird tapering at the end. I was told by one of the neurologists that my perception that things are getting worse is probably due to "creeping atrophy"-that sometimes the atrophy stops, sometimes it just keeps going.

Are there any treatment options out there? I'm at the point where I have almost no sexual sensation, have to constantly urinate, and have very poor bowel functioning. I was told there were really no options.

thanks, Marc.

Marc,

Your description suggests that something else is going on besides an accident causing conus compression. The fact that you had good bowel, bladder, and sexual function for two years after your injury suggests strongly that you did not have serious injury to your conus and that the decompression or other therapies that you had at the time of your injury had preserved your conus. The fact that you are now having these problems indicate that you have another cause of the losses. These may be due to tethering of the conus and the spinal roots (many of them do emanate from the conus). I think that you need to evaluation of an experienced neurosurgeon and careful imaging studies, to see what that cause of the delayed loss is. Something is causing it and you need to stop and reverse it.

Wise.

[marcn]

Originally Posted by Wise Young

Marc,

Your description suggests that something else is going on besides an accident causing conus compression. The fact that you had good bowel, bladder, and sexual function for two years after your injury suggests strongly that you did not have serious injury to your conus and that the decompression or other therapies that you had at the time of your injury had preserved your conus. The fact that you are now having these problems indicate that you have another cause of the losses. These may be due to tethering of the conus and the spinal roots (many of them do emanate from the conus). I think that you need to evaluation of an experienced neurosurgeon and careful imaging studies, to see what that cause of the delayed loss is. Something is causing it and you need to stop and reverse it.

Wise.

Thank you very much, Wise, much appreciated.

I should clarify that I didn't do great for the first couple of years, there was very definite impairment of bowel, bladder, etc., but it was livable. But that changed about three years ago, to the point I'm at now-much, much worse. I've had several MRI's in the last three years, with a neurosurgeon concluding that "there's nothing surgical". that prompted me to see the two neurologists, who also reviewed the MRIs and found "no new cause" for dramatically increased dysfunction-both making the finding that spinal cord atrophy is the likely cause. Are there specialized MRIs I should be asking for? Or can delayed atrophy cause the problems I'm having?

Thanks again, Marc.