I had a total loss of sensation in the bladder and bowel as well as control right after my first fusion, which should have been a huge tip off to my surgeon that along with the complete foot drop screamed CES at him but for some reason, I think mostly because he was so impressed with his work, it just slipped right by him.
I also developed cellulitis after surgery so when I saw him on Monday after I went home, I told him about
the problems with lack of feeling and control that I was having and he just said it was post op swelling and would go away. In fact, I saw him three times that week alone because of the infection and he still did not do or say anything more about
it , and I brought it up each time because it really was scaring me.
I have read and seen more cases of CES lately than I could shake a stick at and many of them were not recognized by their surgeons, which is really frightening.
I have to cath now because despite trying several medications none of them were helpful, and unless I want to take my chances with having accidents outside my home, I have to cath. That was hard to get past, at least mentally. Now, it's not so bad and I at least feel a bit more confident in not worrying about
where the nearest bathroom is and if I can make it in time.
The bowel problems are still there too. By the time the other doctor's that I consulted when I wasn't getting any better told me that it was CES, I was so upset after being brushed off for 16 months that it wasn't funny anymore. I have a great urologist, he's a dear man and he has tried so hard to help me find a way to handles these problems. I don't know where I would have been without him, other than hiding in my house since there seemed to be no rhyme or reason to my loss of control.
I know that when the decompression is done early (24-48 hours) once the symptoms start , that the chances for nerve recovery are pretty good. In my case, it was so long and the damage at several levels, so the nerve damage is permanent at this point.
Thankfully , my husband is very supportive and so are my kids. They've seen me go from an active, involved mom, GS leader to one who can't walk into a store without my cane and leaning on a shopping cart to get around the store. Thankfully, my physiatrist has ordered a scooter for me, so once we get that approved , hopefully things will be better with mobility anyway.
I was up to 150 mg of Oxycontin a day but we recently switched that out for Opana ER , currently 20 mg twice a day and 5-10 mg IR for breakthrough, along with Baclofen and Pamelor for nerve damage. I was taking Lyrica for the nerve pain and it worked pretty well but I was at the maximum dosage, which caused a lot of weight gain and swelling and had to stop taking that. I haven't found anything that works as well yet. Topamax made my nauseated, and killed off any appetite that I had. In fact, I lost all of the weight that I gained from Lyrica in less than 2 weeks on the Topamax.
open to other suggestions for the nerve pain if you have any.
PLIF/TLIF Fusion w/Instrumentation L4-5 Spondololysthesis L4-5.Laminectomies L4-5, foraminal stenosis L3-4, L4-5, L5-S1, herniations L3-4, L4-5, L5-S1, central canal stenosis L3-4, L4-5 and L5-S1
POST OP CES 3/30-06
Neurogenic Bladder and Bowel, bilateral numbness legs and feet
Revision for failed Back surgery, pseudoarthrosis L4-5, hemilaminectomies L3-4, L4-5, L5-S1, bmp added to revision fusion, replaced two bent screws that were reversing out of vertebrae - August 2, 2007
On going back pain and neuropathic pain, failed back surgery, consult for scs, decided not to do that at this point.
Adhesive Arachnoiditis also......just what I didn't need..