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Reconstructive Spine Surgery advice?

Hello everyone. My name is Amber, I'm a 36yr old mother of one.

This is a summary of how I got to where I am now and hopefully get some feedback from others who have been where I am.

In 1993 I was in a car accident and suffered many injuries including a compression fracture of my L-4 vertebrae. Thanks to the "fast tracking" at the ER I was unaware of it until 7 months later. I ended up having a laminectomy of the L-4,5,S-1 discs. The surgery did what it was supposed to for about 2 years then the L-4&5 discs re-ruptured. I decided to tough it out and I did, through working a physically grueling job, having a child in 1999.

Then in 2008 I could no longer take the pain and could tell I had gotten worse. I was referred to an Orthopedic Surgeon who informed me that I had Degenerative Disc Disease and from my last MRI films compared to new ones had degenerated approximately 75% and would need a fusion.

In March of 2009 I had the fusion. By May something felt very wrong. In August I awoke with severe pressure on my lower back and could barely move. I had been sitting in an armchair and went to stand then felt something very wet on my shirt and shorts. I reached behind and lifted the edge of my shirt and immediately my hand was soaked. I rushed to the bathroom and yelled for my son who came into the room and freaked out. My back had opened up and liquid was literally squirting out like a fountain. I was taken to the hospital and sent back home with a band-aid and a kiss. Later that evening I began to run a fever of 103° and was taken back to the hospital and admitted. I underwent debridement surgery for a infection (to this day still don't know what kind) and was on a wound vac for 2 months afterwards.

Everything went well until September of 2010 which another infection ruptured. They performed another surgery, told me I had MRSA and sent me home. Yet again, everything went well until August of 2011 and had the worse of the three infections to date. This time having a lump raise 3inches off my back, I was quickly admitted to the hospital and underwent my 3rd surgery for infection removal. The difference this time, the Ortho who performed the fusion and other debridement surgeries had moved so my GP took over. They called in Infectious Disease, Neurosurgery and Wound Care alongside them. I was put into quarantine because of the MRSA. After the surgery I felt like someone in the TV show "House"! I was informed that I did NOT have MRSA it was another type (I cannot remember the name) but I would have to go home with not only ANOTHER wound vac but a PICC line as well for the antibiotics.

Here's where it gets fun. I have found out in the past month that it's Osteomeylitis that I have and that my screws are severely loosened to the point they have bore impressive holes in my vertebrae. I was also told that I have to have Reconstructive Spine surgery, which will consist of at least 3 surgeries over the next at least 3 years.

My questions are:

Has anyone out there had to have the Reconstructive surgeries and if so what do I have to look forward to?

Has any of you had to deal with Osteomeylitis in their spine and the surgeries to get rid of it?

I'm just really REALLY scared, tired, angry, did I say scared??

I know this is a huge post, I am so sorry about that. Thank you all for reading it and please any and all advice is welcomed!!!



  • dilaurodilauro ConnecticutPosts: 9,839
    edited 09/04/2012 - 6:44 AM
    It started from the area that they did the bone scape from my hip to be used in fusion. The infection caused me to stay about 3 more days in the hospital, but then I was sent home with a full pict line and strong antibiotics via the pict line 2x day for three months.
    Osteomyelitis is a difficult thing to get rid of, it is important to catch in quickly.

    I can not address any reconstructure surgery of the spine. Honestly, I have not heard of that, at least put in those terms.
    Ron DiLauro Spine-Health System Administrator
    I am not a medical professional. I comment on personal experiences
    You can email me at: rdilauro@veritashealth.com
  • From how the Dr explained the first of the surgeries I have to look forward to this is what's going to happen.

    He said he's going to go in, remove the hardware. In the original fusion surgery there was no bone graft or bone materials used. The Dr just put the screws in along with an internal bone growth stimulator. The stimulator had to be removed during the second infection surgery because the leads had come loose and I felt like someone was literally poking me with a cattle prod from the front of my thighs to the base of my skull.

    Anyway once he gets the hardware out he says he is going to have to shave/scrape the infected bones clean. Also he is going to have to remove a significant amount of scar & dead tissue from my back.
    After the surgery he told me I will be back on my buddy (wound vac) and IV antibiotics. He didn't tell me if it would be just a normal IV or I would have another PICC line put in.

    He doesn't know yet what hardware / type of fusion he's going to do. It all depends on how much good vertebrae bone is left after he is done.

    I've been steadily trying to find whatever I can on spinal reconstruction due to Osteomeylitis in the spine and there's not a lot of helpful info out there.
  • BkinsBBkins Posts: 364
    edited 09/04/2012 - 3:09 PM

    It sounds as though you have already been through the ringer with all your surgeries, and at such a young age to boot.

    I don't know where, nor do I care to hear, where this/these surgies took place as it sounds like youu didn't get the best of care in your surgery and after care. I've never heard of doing a fusion without using some bone growth material either from your bones or artifical. How did the surgeon expect the bones to grow again. I understand the bone growth stimulator as I am wearing one now.

    I also don't understand how it took that long for you to start squirting pus and continue to do so. You didn't feel bad or run a fever? That is kind of strange to me and goes against everything I know abount infections.

    I've not heard of reconstructive surgery either unless it just being called that but is really a revision surgery. I can help you out if its actually a revision surgery. In a revision they go back in and remove and hardware and replace it with new. They usually add another layer to the fusion but not always. In your case I could see them taking out your hardware in one surgery and then going in through the front of you to put in cages with bone growth material in them and closing you up. They would go back into you backside and put in new hardware and close you back up. Some surgeons will do this operation in one very long operation. Its usually like 7-10 hours to do it all. This is called a 360 revision operation. Your surgeon may be doing something totally different so its best you ask then directly what is going to be done. Where are you located?

    Hope your able to get things going in the right direction. I would also make doublely sure your surgeon is board certfiied in back surgery and also a fellow in a number of places. This insures you are getting a surgeon that HAS been trained and has passed tests dealing only with the spine. Most spine surgeons only deal with the spines although they get training in other areas of the body as well. You need a neuro or orthropedic surgeon to do your new work.

    Hope some of this helps.

  • EmilyEEmily Posts: 112
    edited 09/04/2012 - 9:59 PM

    I also had to have reconstructive surgery after an infection. The reconstruction part refers to the fact that the doctor anticipates that some bone will be lost and that they will have to use some Titanium (meshes or cages) to reconstruct the spinal structure.

    In my case, I had an infection after a PLIF and the revision-reconstruction was performed in two stages with IV antibiotics over the period between and after the surgery.

    In the first surgery, they went through my lower abdomen to remove the old cages that had sunk into the bone and scraped out the infected area. Afterwards I was kept absolutely flat on my back for a week and then put into a hard brace and turned over for the second surgery.

    This was done through my back. Scar tissue was removed (apparently this took 5 hours alone) and the doc was able to get normal spinal alignment and get the height of the vertebrae back by using two different sizes of titanium cages in between the vertebrae. The X-Rays are pretty weird, but you can see that everything lines up. They used two sites to harvest bone to pack into these big cages and screwed the whole lot into place with 3 smaller and 1 big screw that kind of angles into the pelvic bone.

    As was expected, that screw did get loose because the bone was in pretty poor shape and I had to wear the hard brace for 3 months.

    Now, after 14 months, things are pretty much all fused (although I can't have further CT scans because of too much radiation already). It feels okay, and I'm not lopsided anymore - as I was before the reconstruction.

    At the second surgery the bone sample cultures were negative and my doctor felt that the debridement surgery and heavy-duty IV antibiotics had removed all the infection, so I did not have to have a PICC line.
  • Thanks you guys for your input, it does help.


    With the first infection I had told the Dr at every visit and even called him a few times that I wasn't feeling well. There was increasing pressure and pain in my back and it was hot to the touch. He had told me to walk more& he cut back on my pain meds. As for the infection, it was because I had been taking regular tylenol along with the pain meds and it kept the fevers low enough no one took notice.

    I did check up on him prior to letting him operate on me and he seemed to be a good surgeon, on paper. Board certified orthopedic spinal surgeon.

    It was because of my family doctor I was admitted to the hospital and the first infection treated. When the second infection happened, again, it was my family doctor who had me admitted through the ER. It was also that Dr who found that the leads were loose in the stimulator and said it needed to be removed.

    Before the second infection operation I actually got into an argument with my Ortho Dr about removing it. By this time I was listening to my family Dr, it felt like they were the only ones listening to me.

    The only thing that makes me feel better about the first two infections is that my original Ortho was booted out of the practice.

    I'm located just north of Charlotte, NC. The surgeon I have now seems to know what he's talking about. He specializes in revision surgeries as well as reconstruction and scoliosis surgeries. He told me he will be working alongside one of the neurosurgeons in his practice. He's the only orthopedic surgeon in their neurosurgery practice. He told me that he's in a research group working on doing my types of surgeries and would possibly be going in through my side for the later surgeries. I know he won't be using my bone for the fusion but either donated or other material. He told me this first surgery he is going to concentrate on removing the hardware, infected bone and tissues. From the amount of scar tissue I have, I still have a 4cm deep hole in my back that I have to change 3 times a week and pack with silver wound packing. My ins wouldn't let my home health nurse come out to change it after having her come out for 7 months with having the wound vac on for 5 of the 7.


    What you had sounds a lot like what I am going to have, except split into different surgeries. It sounds like yours went really well and I hope mine do also.

    How long were you in the hospital for your first reconstructive surgery? After the hard brace did you have to wear any others? I've seen those and they look quite uncomfortable! How long did it take you to start feeling better?

    I can't wait to be able to not walk like a hobbled monkey (my son's description LOL)

    I'm just hoping this time since there are 5 different types of specialists involved I'll get fixed.
  • Man,

    I really hate to hear this happening to anybody. For a infection to be missed like that is problematic but from what you say the tylenol probably hid it a lot. Sounds like you have a very, very good GP Dr. Hold on to him.

    I very often wanted to scream at the insuance company's when I had to deal with them. I am on Medicare now and don't have to put up with any of that anymore. Don't know how long the good Medicare will last but at this point Its good by me. I found with the HMO type insurance plans that I could rarely find good Dr.s in their list. Good for you in finding two that are in a group, or insurance group, that have credentials and agree what they need to do to get you back up and running. It sure can be a challenge and it plain wears you out. At least is did for me.

    It sounds like even though your spinal surgeon had his credentials that maybe he wasn't much good. Dr.s can cheat on tests just like anybody else. Getting booted out of a pratice for any reason kinda speaks for itself. Good you don't have to deal with him any more.

    I got a good laugh out of you sons description of you. Its not funny I know but it made me laugh.

    Keep us informed on how you doing and whats going on.
  • I spent a total of two weeks in hospital in a high-care environment. I was fortunate enough to be able to get a hospital bed setup at home and was pretty much confined to bed with bathroom privileges only for the first month.

    I spent all of the three months in that hard brace... At the 12 week mark, my Neurosurgeon assessed the amount of bone growth and I was allowed to take it off straightaway. I did not get another brace and rebuilt my back muscles by swimming backstroke.

    Feeling better was a roller-coaster. I felt pretty good at 12 weeks, and my surgeon said that the way you feel at that time is probably how you will end up. Because of the multiple surgeries, my back muscles and core muscles were not in great shape at all. I also had wasting of one leg's muscles that I had to work on. I went back to work at 12 weeks, fulltime. The first 3 months were no fun at all and I was exhausted at the end of each working day.

    My energy started coming back and pain really minimized at about 9 months out. Now, at 14 months I'm doing really well. I am allowed cycling, walking and swimming, but because of the bone loss my downhill skiing and horse riding days are over.

    It's a new normal, but yes, I was listing over to the one side like the Queen Mary before the surgery and walk and sit perfectly normally now.

    For me the key was getting the right doctor, who was humble enough to want to consult with other colleagues about what would work best. And then made the plan, executed on it and was always available via email to discuss issues with me.
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