Posted 12/26/2007 3:06 AM (GMT -6)
Hi Sue,
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.
I am open to other suggestions for the nerve pain if you have any.
Sandi
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..

Posted 12/26/2007 6:11 AM (GMT -6)
Sandi
I have no suggesstions for you BUT I do want to say you sure have been thru Hades and Back and you are one strong person.......
I am so glad you are finding yourself this comfy I knew you would here...I told you it was fantastic ...........

Take care of you and others will have many things to say I am sure
God Bless
LYN
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Posted 12/26/2007 4:04 PM (GMT -6)
Thanks Lyn. I've had my moments of loosing it, I can tell you. At first, I was so angry at the surgeon that I could have hurt him. After all of his poo pooing me for all of those months, when I was finally told what was going on, he called me and for the first time in 16 months to "see how I was doing". In other words, he was afraid that I was going to sue him.
He had my last MRI for almost two months before he finally decided that he should take a look at it. By then I knew what it was and how bad it was.....I'd already seen the other doctors and was livid.
He avoids me like the plague now, not surprisingly. I still haven't decided what to do about a lawsuit or not.
Right now, my priority is to get to the best physical condition that I can get to, and figure out how to live the rest of my life like this. There are parts of this that are so humiliating to have to discuss with doctors or anyone but at the same time, if I don't, I don't have a clue how to deal with them.
Anyway, I have moments like everyone does where I just don't want to get up out of bed, but my kids won't let me do that, so I keep going.
I never envisioned things turning out this way, but no matter what, I have to deal with it, it's not going to go away, so I better keep plugging along.
Sandi
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..

Posted 12/27/2007 7:56 PM (GMT -6)
I saw my PM today. He is leaving the first week of January to move to Puerto Rico. I really hate to see him go, he's been very good to me and works to make my life as tolerable as it can be, despite all of the problems that I've had.
He increased my Opana ER to 40 mg bid and Opana IR to 5 mg tid...hopefully that will help. We also decided to go back to Lyrica since it worked pretty well for the nerve damage, but it caused a lot of weight gain and thereby caused problems with my blood sugar. I'm kind of glad that we are going back to it, but not looking forward to the weight gain and the increased blood sugar, which will mean more diabetes meds.....It's a trade off, that's for sure.
Anyway, we'll see what the new dosage does or doesn't do....I am hoping this will be the last adjustment for awhile...
I'd prefer a lower dose, but it's not working so well at this point......
Sandi
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..

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