I NEED HELP/ADVICE FOR CAUDA EQUINA SYNDROME (CES) patient........

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hello to all,

i need help or advice regarding my husband's present condition.we were married last nov.26,2007.he has been complaining of pain on his back and some numbness on his left leg for a couples of week back then.he was diagnosed of having stone in the ureters,treatment was done and yet his numbess was still there.we consulted a neurologist and ortho just to make that it has nothing to do with his spine since according to him, he has sometimes shooting pain from waist going down......both of these doctors told us that there's nothing wrong on his xrays and most probably the pain was from his uro.problem.finally,the pain ang numbness was unbearable that prompted my husband to consult a different ortho.last dec.18,he had his lamenectomy and descectomy of l4l5,but on the morning of his operation he manisfested already the signs of cauda equina.....since i was not there with my husband,i have to talk to the ortho mostly on the phone....she so kind and very nice to us......but after the operation my husband had lost his bladder and bowel control............he had no power over his bladder and bowel that he needs to be with a foley cath.and be on laxatives for his bm.then,after almost 3 weeks of his surgery,he had to go for another one for his supra pubic cath since he developed some problem(allergic reaction maybe from the fc )the urologist opted for spc and we did agreed since my husband can't do his self cath.

until now,he has not regain his control over his bladder and bowel.....i know it will take time or worst he will never will since he has nerve damage . i been reading about ces and it seems that less attention were given to this conditon...medically speaking.i even joined the ces group and found out that even in other countries the same thing is happenning.doctors were not really familiar or has no further expertise to treat this condition. i dont want to be so mean about it but reading the stories of those other patients having the same conditon of my husband really make me sad and very disappointed to think that i my self as nurse cant do nothing for his recovery.partly,i have regrets....regrets of not using my clinical intuitions.why i didnt opted for a second opinion when his numbness persisted.....so many questions and "what if" ............

i know i cant never turn back the time.....i need to face the sadness and the challenges that it will bring to us.

please help us ,any one of you who knows a doctor/doctors specializing in ces.we need them to manage this condition.you will not just help us but you will help as well those patients having this condition who has been suffering for years and yet they cant find a dr.who has real knowledge of this. you can read their stories on www.caudaequina.org

please help us...................:redbeathe:redbeathe:redbeathe:redbeathe:redbeathe

thanks a lot

acetabulum:redpinkhe

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Specializes in Case mgmt., rehab, (CRRN), LTC & psych.

I'm so sorry that your husband has endured so much suffering in such a short span of time. I'll keep my fingers crossed for your family!

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Specializes in M/S, oncology, QI/PI, SCI rehab.

Have you checked out http://www.caudaequina.org website? I often refer my pts to this website when educating them. It is a great support group for the pt and their loved ones. Good Luck!

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hello to all,

i need help or advice regarding my husband's present condition.we were married last nov.26,2007.he has been complaining of pain on his back and some numbness on his left leg for a couples of week back then.he was diagnosed of having stone in the ureters,treatment was done and yet his numbess was still there.we consulted a neurologist and ortho just to make that it has nothing to do with his spine since according to him, he has sometimes shooting pain from waist going down......both of these doctors told us that there's nothing wrong on his xrays and most probably the pain was from his uro.problem.finally,the pain ang numbness was unbearable that prompted my husband to consult a different ortho.last dec.18,he had his lamenectomy and descectomy of l4l5,but on the morning of his operation he manisfested already the signs of cauda equina.....since i was not there with my husband,i have to talk to the ortho mostly on the phone....she so kind and very nice to us......but after the operation my husband had lost his bladder and bowel control............he had no power over his bladder and bowel that he needs to be with a foley cath.and be on laxatives for his bm.then,after almost 3 weeks of his surgery,he had to go for another one for his supra pubic cath since he developed some problem(allergic reaction maybe from the fc )the urologist opted for spc and we did agreed since my husband can't do his self cath.

until now,he has not regain his control over his bladder and bowel.....i know it will take time or worst he will never will since he has nerve damage . i been reading about ces and it seems that less attention were given to this conditon...medically speaking.i even joined the ces group and found out that even in other countries the same thing is happenning.doctors were not really familiar or has no further expertise to treat this condition. i dont want to be so mean about it but reading the stories of those other patients having the same conditon of my husband really make me sad and very disappointed to think that i my self as nurse cant do nothing for his recovery.partly,i have regrets....regrets of not using my clinical intuitions.why i didnt opted for a second opinion when his numbness persisted.....so many questions and "what if" ............

i know i cant never turn back the time.....i need to face the sadness and the challenges that it will bring to us.

please help us ,any one of you who knows a doctor/doctors specializing in ces.we need them to manage this condition.you will not just help us but you will help as well those patients having this condition who has been suffering for years and yet they cant find a dr.who has real knowledge of this. you can read their stories on www.caudaequina.org

please help us...................:redbeathe:redbeathe:redbeathe:redbeathe:redbeathe

thanks a lot

acetabulum:redpinkhe

hi

i have been suffering with cauda equina since march 2001, unfortunately the doctors pretty much have the same opinion that nothing can be done, i have seen many speciallists in this field including one of the worlds best in this area a profeesor clare fowler at the university of neurology in london, i was given many time scales but i was told that after 18 months had passed that it was unlikely i would recover, i still think that some medical mirracle will be found to cure this horrible condition, untill then you just have to get on with it.

however if anyone has any info please let me know.

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