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mrsm123
Veteran Member


Date Joined Dec 2007
Total Posts : 1228
   Posted 12/25/2007 12:57 AM (GMT -7)   
Hi , I'm Sandi. I have had back surgery twice now in the last less 18 months. The first was a PLIF/TLIF with cages, and instrumentation. I developed a post op case of Cauda Equina Syndrome which caused many, many neurological problems, which still are not resolved. I had a revision surgery in August of 2007 to try to decompress the central canal, and for pseudoarthrosis at L4-5, as well as to try to free up the other nerves. So far, I am not seeing any improvement in pain levels either from the back pain or the neuro pain. My neurosurgeon and I have kind of resigned ourselves to not seeing any since he hoped that we would see it after the surgery.
My story is a long one but I don't want to bore anyone with it.
I was taking oxycontin ER and IR for pain but found that it wasn't working so well anymore prior to the revision surgery. I decided to give it some time since I was having the second surgery and hoped to get some relief from that. In October after another increase in pain med dosage, I quickly came to the conclusion that it wasn't working and took myself off it after talking to my physiatrist, who decided that we would try Opana instead.
I tapered myself off the Oxycontin with no real problems, surprisingly, and we started the Opana ER and IR for pain control. So far, we are still tapering the dosage and it seems to help some but not nearly enough. I see the physiatrist again two days after Christmas, so I'm sure that we will go up another 10 mg then. Hopefully, that will offer enough relief that we won't have to go higher than that.....
The neurosurgeon had me see another doctor for a consult for spinal cord stimulation but I have several reasons not to do that at this point.....I was also diagnosed with arachnoiditis after my second surgery, so that is one factor in my decision not to go forward with that at this time.
Anyway, I just wanted to say hello and give you a bit of background on me. I've spent the last few days reading old posts to try to get a feel for the board and it's members.
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..


prepackey
Regular Member


Date Joined Oct 2004
Total Posts : 183
   Posted 12/25/2007 1:35 AM (GMT -7)   
merry x-mas every one, i hope you have a nice peacfull one, i have my x-mas present i'am not hurting!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! love ya! packey
 
nono
** HI prepackey...glad ya posted but you know better than to Hijack a thread ...lol.......
 
Merry Christmas my friend glad to see you ..........LYN

Post Edited By Moderator (Howlyncat) : 12/25/2007 1:34:02 PM (GMT-7)


Howlyncat
Elite Member


Date Joined Jan 2005
Total Posts : 24909
   Posted 12/25/2007 1:32 PM (GMT -7)   
Hi there and Welcome to HW Sandy..Sorry you have to be here BUT this is the best place for support and caring you will ever come to know IMHO..........

The people here are fantastic and treat you as family support is given easily and willingly with their hearts ...
Please do read other threads ..check out the resources in yellow at the side and be sure to keep posting ........

Hoping you have a good Holiday
Take care
STAY with us ...........LYN
    Contribute today to support Healing Well Forums...Donate @
                          http://www.healingwell.com/donate/
 
  CO-Moderator@ Crohns
       Anxiety/Panic
  Moderator@ Alzheimer's
DX @ Crohns, Pyoderma Gangrenosum ,Anxiety /Panic
New DX of C.O.P.D.
ON too Many meds to post.........
 
        We Have Anxiety.....Anxiety Does NOT have Us
 
 
                 Happy Holiday From My Home To Yours
      Please Stay Safe and Have  a Designated Driver .........
                           LYN N CAIT
 
 
                            


Mochiah
Regular Member


Date Joined Dec 2007
Total Posts : 450
   Posted 12/25/2007 1:32 PM (GMT -7)   
Welcome to the family, Sandi. I lurked here for only 1 day and knew I had to sign up!!! My back surgery was the same as your first one. I had developed some cauda equina symptoms prior to surgery, but not as bad as yours. Those did clear up within a few months of surgery, but I am still left with everything else..the back pain, radiculopathy, pins, needles, weakness, numbness....did I say pain?!! After my last postop with my neurosurgeon, he pretty much patted himself on the back, swatted me on the butt and sent me on my way because he had "fixed" me....yeah, in his mind only. At any rate, welcome....and Merry Christmas.
Mochiah/a.k.a. Sue
cervical fusion 2006, with great result
L4-5 surgery with cages, plates, and screws in 2005, I have continued pain 
MEDS:  Fentanyl patch, Norco, Celexa, and trazodone
 
Im going to smile like nothing is wrong, act like everything is perfect, and pretend its not hurting me. (quote used with permission from "Tennis").


Chutz
Veteran Member


Date Joined Jan 2005
Total Posts : 9090
   Posted 12/25/2007 2:15 PM (GMT -7)   
Hi Sandi,

And welcome to our family!! I'm so sorry you are having such misery with your back. Spine surgery is a risk and sounds like you came out on the down side of things.

Please keep in touch. We stick together here and hold each other up. Any time you need us you just say the word and we're here for you.

Hugs,
Chutzie
Co-Mod Fibromyalgia & Chronic Pain Forums
~~~
Fibromyalgia, Ulcerative Colitis, Insulin dependent diabetic, collapsed disk, dermatitis herpetiformus, osteo arthritis in spine and other locations.
***************

The only difference between genius and stupidity is that genius has it's limits. Albert Einstein: (1879-1955)


mrsm123
Veteran Member


Date Joined Dec 2007
Total Posts : 1228
   Posted 12/25/2007 6:21 PM (GMT -7)   
Hi Howlyncat,
Thank you for the welcome. I managed to read most of the posts , it only took me a few days.
I really do like the caring and support that you folks here give to one another and hopefully, I will be able to give some support and get some myself.
Merry Christmas everyone and thank you again for the welcome!
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..


mrsm123
Veteran Member


Date Joined Dec 2007
Total Posts : 1228
   Posted 12/25/2007 6:31 PM (GMT -7)   
 Hi Mochiah,
My first surgeon is one of the top doctor's in NY, or he was supposed to be anyway. His bedside manner could definately use some work though. sad
I did my homework before I went to see him, and his reputation was very, very good.....
Surgery like for most of us was the last option that I wanted but if I knew then what I know now, I might have reconsidered.
I had no idea about CES but soon learned that something was seriously wrong. A partial foot drop became a complete one upon waking and the pain, well there is no way to describe that kind of pain. I wished for death when they moved me on a backboard from one bed to another....
I spent many months complaining of the bladder and bowel problems that I was having, why they didn't listen is beyond me.....but it's left me where I am now.
I have an afo for the left foot and ankle, and a 5 prong cane, since my balance is way off, and doesn't seem to be improving. I have resigned myself to being this way, and trying to make the best of it that I can.
I keep hoping for some improvement from this second surgery, but it really doesn't look like that's going to happen anytime soon. The neurosurgeon said when he saw the nerves at L5-S1 that they were so squished they were like paper, if he touched them he was afraid they would crumble. And the other nerves were encased in scar tissue which he tried to remove, and was successful with a small portion of it, but the damage to them is extensive and they didn't rebound like he hoped . I have to give the man credit for trying though.
I know what you mean about the ego and the I fixed you thing. Sigh.....
thank you for the welcome and Merry Christmas to you too.
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..


mrsm123
Veteran Member


Date Joined Dec 2007
Total Posts : 1228
   Posted 12/25/2007 6:35 PM (GMT -7)   
Thank you too Chutz,
It sure does seem that I got the bad side of the odds didn't I?  I had no idea that things could go as horribly wrong as they have in my case. You could clearly see where my spinal canal was pinched off, at all three levels, all on different MRI's...the last MRI clearly showed where L3-4 and L5-S1 were like someone pinched both sides of the spinal canal and pinched them right off...
And I was told that CES is so rare, I'm not so sure that I believe that anymore.....
Anyway, I'll be around and posting pretty regularly I'm sure. Adjusting to all of this has been hard at times...and other's well, I try to find some humor in things....just not sure where it is in all of this yet......I'm still looking.
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..


Mochiah
Regular Member


Date Joined Dec 2007
Total Posts : 450
   Posted 12/25/2007 7:00 PM (GMT -7)   
Sandi - I still have a bit of a right drop foot, but it is better than before surgery. My main complaint was the bowel/bladder...and that, too, has gotten somewhat better. I wouldn't say CES is so rare, but it is a much less likely diagnosis than other radiculopathies causing the same type of symptoms.
Mochiah/a.k.a. Sue
cervical fusion 2006, with great result
L4-5 surgery with cages, plates, and screws in 2005, I have continued pain 
MEDS:  Fentanyl patch, Norco, Celexa, and trazodone
 
Im going to smile like nothing is wrong, act like everything is perfect, and pretend its not hurting me. (quote used with permission from "Tennis").


mrsm123
Veteran Member


Date Joined Dec 2007
Total Posts : 1228
   Posted 12/26/2007 1:06 AM (GMT -7)   
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..


Howlyncat
Elite Member


Date Joined Jan 2005
Total Posts : 24909
   Posted 12/26/2007 4:11 AM (GMT -7)   
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
    Contribute today to support Healing Well Forums...Donate @
                          http://www.healingwell.com/donate/
 
  CO-Moderator@ Crohns
       Anxiety/Panic
  Moderator@ Alzheimer's
DX @ Crohns, Pyoderma Gangrenosum ,Anxiety /Panic
New DX of C.O.P.D.
ON too Many meds to post.........
 
        We Have Anxiety.....Anxiety Does NOT have Us
 
 
                 Happy Holiday From My Home To Yours
      Please Stay Safe and Have  a Designated Driver .........
                           LYN N CAIT
 
 
                            


mrsm123
Veteran Member


Date Joined Dec 2007
Total Posts : 1228
   Posted 12/26/2007 2:04 PM (GMT -7)   
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..


mrsm123
Veteran Member


Date Joined Dec 2007
Total Posts : 1228
   Posted 12/27/2007 5:56 PM (GMT -7)   
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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