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Failed back surgery ruining my life.

AnonymousUserAAnonymousUser Posts: 49,671
edited 06/11/2012 - 8:34 AM in New Member Introductions
Hi I'm Jennifer,
I can't begin to tell you how grateful I am to find this site.
I had a fusion (L-4,L-5)Jan2003. The surgeon used a new technique/product called the LT Cage with BMP instead of the traditional hip graft. This was my fourth spine surgery,third with this surgeon. I had some difficult abdominal pain during the five days I was in hospital directly following surgery but went home as planned on the fifth day. The night I got home I developed some pain and a nasty burning sensation (hard to describe)in and around my spine. By the next morning the pain was more than the meds could handle and I had a fever so we called the doc and his office sent me to the ER. Great, I HATE the hospital ER. The blood work and x-rays revealed nothing but they admitted me for 48hour obs just to be safe. The pain does not resolve so they say "hey you just had back surgery,recovery can be difficult" and I go home again. Some of my frustration at this time comes from my surgeon not being available. I still dont know where he went because I've never seen him or spoke to him again, even his associate didn't know what to do because the product and procedure were new to him. Great! Home two days and the pain and burning have become unbearable,fever still present,nausea uncontrolled so I called the doc got referred back to the ER and after waiting 13hrs left that ER and went to another a little closer to home.
I was in that hospital 45days. Surgeon never returned their calls, my gastroenterologist fired me(Crohns disease and I didn't tell him I was having back surgery),my GP whom I had been with 10yrs was at wits end and I was psychotic from the high dose IV steroids and Dilaudid,Fentynl,and whatever else they had me on. No exaggeration,psychotic.
At this point my Dad and husband decide if they don't get me out of this hospital I will die. Probably a good call,not popular with the docs but still a good call.
I'm home with a port-a-cath,psychotic from drugs and I need all new docs. Let's just say that's a challenge considering I looked like a walking malpractice suit.
New neurosurg says don't think it fused and I don't think the cage is in there anymore BUT you have bigger problems from the IV steroids and the damage the 45 days in hospital. Oh and what were you thinking letting someone do this to you? Really you aren't a virgin to back surgery yet this didn't sound crazy? OK Got it.
My point in all this is I had that surgery in Jan 2003 and have never been ok again.
I have no trust left for any doc. I've tried drugs (80mg oxy 3x a day) and hate the sadness that comes with them, I've tried PT, I've tried to pretend it didn't hurt. I've been suicidal,angry,depressed and nothing seems to evolve. I'm not sure if I'm crazy. I hate not knowing if I'm crazy.
I think I'm deteriorating,my back problems have always been nerve pain,numbness but over the last couple years I've developed a place next to my spine that is so painful to even touch that I can't sit or sleep without being very,very careful. It seems to be under the muscle or tendons....I don't know but it's not going away and I've become so distrustful and disallusioned I'm not sure where to turn.
I'm a mother,a wife. I'm isolating. I'm angry. I'm on disability. This is not living.
I've obviously tried to keep this somewhat focused and of course there's more but I have a hard time even venturing out here.
Can anyone help?


  • I am very sorry for all your problems, and glad you found this board. This is a wonderful group of people who are generous with their knowledge and support.

    There is one poster, ernurse, who I consider an expert on the unfortunate results of BMP gone awry. If you type "BMP" into the search box, I imagine you will be able to find various threads on this topic. It will not help your situation but you will know you are not alone in this problem. As a matter of fact, I think there are ongoing class action law suits. I suppose the time limit has expired for you to file a malpractice law suit against your surgeon and the hospital.

    I'm sure others will see your post and will respond to it, hopefully including ernurse. She might have some suggestions for a rescue surgery that would improve your condition.

    In the meantime, welcome.

    xx Gwennie
  • I can relate to a lot of the emotions you've listed. I have for so long wanted my life back, not to be this body that I have now. I'm not going to blabber on about acceptance. What I want to say is that you have to use that anger to do something. Research your problems, find that new doc. If doc #1 did screw up, that sucks, but don't use your energy to be mad at him, use your energy to find ways to enjoy your life.

    With IV steroids, no wonder you didn't fuse. I didn't have IV steroids postop, but did I know that inhibited fusion? No, not until I started having problems did I know that at all. I thought I did my research and had multiple opinions, yet still I guess I made a bad decision because I'm a train wreck.

    I did a lot of research on BMP growing on nerve roots(not my only problem) and it led me to a wonderful surgeon who has done multiple repair surgeries. BTW-except in a rare few situations, my personal belief is that BMP is the equivalent of the devil's saliva. I have significant issues still, permanent damage, archnoiditis, only partially fused after 2+ years, blah, blah, blah... I am now getting a permanent spinal cord stimulator in August for my permanent nerve damage pain in both legs.

    I have been PISSED. I just can't describe how mad I have been. I did not ask for this, I didn't do anything to deserve this, I am a good person, so why me? I just can't describe the depression. I just can't describe how it breaks my heart when my daughter asks if the doctors are ever going to fix my back so I can pick her up. I can't describe how embarrassed I am that my 12 year old son covered me up when I had a seizure so no one would see I was incontinent of urine. Sometimes I've said things because of meds that I wish I hadn't. I bet you understand some of that. I have wished and held out for my old life to come back so long but it never will. So, I'm just trying to make sure I've done everything possible to make me physically the best I can be and hope the mental aspect comes along with it.

    I would be happy to talk with you via PM if you'd like to vent sometime. This site has so many wonderful people and for me, it's nice because I don't have to explain to them if I fall asleep at the keyboard during chat room if my meds kick in. I don't have to explain things because they can empathize in a way no one else can. Even if they're neckies and I'm a backie, we all have had crummy ER experiences(or most of us at one time), walked(or crawled) trying to reach recovery. They understand spiney-type too, so I don't have to apologize if I make spelling or grammar errors because I'm a bit distracted by pain or meds.

    Jennifer, I'm glad you found this site, I hope you can find some help here and make a few good friends, share some laughs, and maybe discover something that might help you.
  • hi and welcome to the forum! :H we are here to offer you support and answer what questions we can. i sure hope being around "spineys" suffering as you are will be of some comfort. :D talking it over and getting it out here may give you the strength to move on. >:D< you want to become proactive and keep searching for relief till you find it. perhaps you have been on the wrong meds. perhaps you need to rest and let yourself heal both physically and mentally. please know we are here night and day. stop by the "Sleep Problems" forum if you are up at night. good luck and i hope you find relief soon!!!! it may be time to find a doctor you can trust. :-C pain can be a sign of a problem. Jenny :)
  • Aaaahhhh you guys are great! Thanks for the welcome and I feel better just releasing some of that pent up fury. I wish we'd all met in some cozy little bistro instead of here.
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