New Here too

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

** 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)

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.

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

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

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

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