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I wanted to share a story of my boyfriends experience with CES because I had never heard of it until he was diagnosed, I searched for information on how he might recover and read so many traumatic stories I was devasted. I could not find any positive outcomes.
For people who might be newly learning of this condition let me share a beacon of hope when you are likely feeling quite terrified!
My boyfriend had back problems for many years, I think prolapsed discs that eventually healed themselves. Last year he had this condition for much longer than normal, a number of months and the pain got worse and worse. He was getting shooting pains down the backs of his legs. One weekend he said his legs were starting to feel numb and then in the space of 2 days he lost feeling in his feet and calves. He could not feel any sensation as to whether his bladder or bowels were full and he couldn't feel his buttocks at all. His penis also completely lost all feeling.
At this point he went to hospital and fortunately was in a hospital with an excellent neurosurgery unit so they recognised the symptoms immediately. The surgeon operated within hours removing the disc. He was in hospital a couple of days for recovery from surgery but almost immediately the feeling in his bladder and bowels returned.
Once back home he was very, very weak for several weeks, really struggling to walk. He had numb legs for a long time and even now, 8 months later, he still cannot feel the base of one foot. For many weeks after surgery the feeling in his buttocks and penis did not return. As you can imagine we were both very worried this could be a permanent situation. After a few weeks he managed to get an erection and ejaculate even though he couldn't actually feel it. Finally after many weeks the feeling in the saddle area fully returned and all was functioning as normal.
He had a very severe limp even until now and sadly that has resulted in a second prolapsed disc which he will also need surgery for but thankfully the disc is not compressing the nerves that would cause CES and the surgeon is confident he will heal nicely.
So he isn't yet recovered from all the issues related to his back but I think he has almost fully recovered from the specific issues associated with CES and the compression of that specific nerve system.
I hope this gives people some hope that it is possible to recover in some situations.
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