[Spinal Fusion / Lumbar] Just found out my XLIF surgery DID NOT WORK!

[NancyC]

Yesterday I went to see my surgeon regarding my XLIF surgery that was done on February 22nd. I had the first part done and was supposed to have the rods put in on March 4th, but I was too drained for the second surgery. Apparently I learned from this group that this is unusual, it should have been done all at once.

Well! The surgeon put up the X-rays side-by-side (pre and post surgery) and except for the PEEK cages and pins, the bones were in the exact same position! AND, he pointed out how some of the vertebrae were starting to crumble - I could see small craters.

No wonder I'm still in pain!

So now I am supposed to have a CAT scan, and he said I may have to have "conventional" spinal fusion. What is that? Anyone know how it differs from the XLIF? Can you direct me to a website where I can read about it?

Needless to say, I am in shock. Comments, please?

~Nancy

[Cindylou]

Nancy, I'm sorry to hear what's happening or rather, not happening, with your spine. Conventional fusion is just good old fashioned fusion of the spine vertebra, the gold standard for some 50 years. Just google "lumbar spine fusion" and many many articles will come up for you to choose from and give you a wealth of information. Good luck. Cindylou

[ajj1001]

if you type in plif or alif or 360 fusion this will give you more results. I have a failed plif so even conventional ones don't always work ( though mine is over a previous operation site)

[Justin]

Sorry to hear the news, Nancy.

Here's some great educational materials found on the Spine Patient Society homepage (there is also a link at the top of the SPS Forum, "Patient Education," that will take you to the same place):

1. Anterior Lumbar Fusion with Cages -- Spine Patient Society Patient Education.
2. Anterior Lumbar Interbody Fusion -- Spine Patient Society Patient Education.
3. Posterior Lumbar Fusion -- Spine Patient Society Patient Education.
4. Posterior Lumbar Interbody Fusion -- Spine Patient Society Patient Education.

I hope this helps.

[NancyC]

if you type in plif or alif or 360 fusion this will give you more results. I have a failed plif so even conventional ones don't always work ( though mine is over a previous operation site)

Thank for for the info, Justin. Now Katie, what is considered "Conventional spinal fusion" or will I find the answers in the websites you sent me?

It's so weird - the hardware is just grinding down the bones - sounds like an ogre from a Grimms fairy tale...

[Katie]

One thought came to mind, Nancy....did you have a bone density test before surgery? They were concerned about mine because of age (mid 50s), but I luckily had extremely good readings, as if I were in my 20s, they said That's the only part of me that can brag

My understanding of XLIF surgery is the method of approach. In mine on my L4/5, Dr. Pimenta went in through my side and went carefully through the psoas muscle with a special probe, weaving around the nerves and avoiding any damage that way and minimizing the invasive ways of the ALIF done on my L5/S1. I didn't have any 'hardware' except for the plastic 'cage' or disc between the vertebrae, no screws, plates, rods, etc. I think part of that was because of my metal allergies, but secondly because of the minimalist approach of the XLIF.

Yours sound the same, just the pins from the PEEK cages there, although they were planning on rods. And I agree...I think everyone I've read about had everything done at once as far as plates, rods, etc. goes in a fusion of any kind. But remember that I'm far from an expert

It sounds like they are going to reinforce everything because of the loss of bone....the description of new craters in the images is surprising over a short time. Has anyone discussed prevention of more bone loss with you? I'm not familiar with what they will do for the 'reinforcement' in this kind of case other than what Justin has already posted, but I'll do some searching.

I'm so sorry that things have taken a detour on your healing process. Remember to make a list of questions before you see the surgeon again. My mind goes into complete dummy mode from stress when I go into an office I'd want to know their plans and reasons why, and about the expectations of success, plus the issue of bone density, the testing beforehand and why not if they didn't. Information is power.

[NancyC]

One thought came to mind, Nancy....did you have a bone density test before surgery? They were concerned about mine because of age (mid 50s), but I luckily had extremely good readings, as if I were in my 20s, they said That's the only part of me that can brag

My understanding of XLIF surgery is the method of approach. In mine on my L4/5, Dr. Pimenta went in through my side and went carefully through the psoas muscle with a special probe, weaving around the nerves and avoiding any damage that way and minimizing the invasive ways of the ALIF done on my L5/S1. I didn't have any 'hardware' except for the plastic 'cage' or disc between the vertebrae, no screws, plates, rods, etc. I think part of that was because of my metal allergies, but secondly because of the minimalist approach of the XLIF.

Yours sound the same, just the pins from the PEEK cages there, although they were planning on rods. And I agree...I think everyone I've read about had everything done at once as far as plates, rods, etc. goes in a fusion of any kind. But remember that I'm far from an expert

It sounds like they are going to reinforce everything because of the loss of bone....the description of new craters in the images is surprising over a short time. Has anyone discussed prevention of more bone loss with you? I'm not familiar with what they will do for the 'reinforcement' in this kind of case other than what Justin has already posted, but I'll do some searching.

I'm so sorry that things have taken a detour on your healing process. Remember to make a list of questions before you see the surgeon again. My mind goes into complete dummy mode from stress when I go into an office I'd want to know their plans and reasons why, and about the expectations of success, plus the issue of bone density, the testing beforehand and why not if they didn't. Information is power.

Katie! You may not think you are an expert, but you are to me! Yes, I had a bone density test and like you, our ages are the same and our bone densities were the same (only mine was like a 30 year old, so you win!)

Yes, mine was the same as yours - no rods, just the pins from the PEEK cages, so the surgeon is baffled. In a way I feel just a little bit relieved - it's been 3 months and I haven't healed, so hearing that news last week was great (in a way). It explained a lot.

Katie, how are you feeling these days? When exactly was your surgery? Sorry, I find this website a bit difficult to get around in, or I would post more, but it was fairly recently, right? Your surgery, I mean. And I asked someone before (I think it was you) if they had a huge abdomen after surgery. I still have quite the belly although I'm skinny everwhere else. Can't fit into my jeans that I wore prior to surgery, don't feel much like eating, so why is my belly so distended? The surgeon is a bit concerned because my navel is pulled to one side instead of being in the middle - ah well.

Thank you for your suggestion about making a list to ask the doctor. I really should. Especially because he is gorgeous (to me) and I get tongue-tied or start blithering on and on.

It sounds like that's what he will be doing: reinforcing everything, but how? I'm waiting for a CT Scan first, and even called the radiology place and did all the legwork/paperwork and sent it off to his secretary. I get the impression that she is miffed but I want it done fast! But perhaps I dared to intrude on her territory and she doesn't like that! Tough for her. I got a June 2nd appointment, pending HER paperwork, but it doesn't look like she's going to move that fast, probably to punish me. Why are so many women threatened?

Okay enough of that topic. Thank you very much for writing, and please tell me how you are doing.

Hugs,

Nancy

[Katie]

Hey Nancy, sorry for the delay, but I'm seldom on the computer these days. I try to check in once a day if possible.

I'll answer the 'how I am' question first, hopefully to give you some encouragement and well, hope . I will not tell you that I am pain free, but it is so close that it doesn't matter any more. It only gets bad when I garden for hours or stand on hard surfaces for extended periods. But I think most of it is muscle/core strength related even though my latest CT scan sounded almost as scary as pre-surgery.

I am now able to garden for hours at a time (even if I pay for it!), and started an office job almost a month ago, putting in thirty-six hours or more a week. Plus I have horses that I play with & currently acting as grandma to two new batches of chicks, as hens are setting and hatching out babies all over the place and needing new pens set up, etc. Plus I am working on some art commissions that are way overdue. Oh yes, and am a real grandma to my one year old granddaughter . She was born just weeks after my surgery.

I'm still on 30-70 mg of morphine/day, but mainly at night as my bed seems to make things worse, even though it is fairly new and pretty high end. As long as I am up and moving instead of sitting for long periods, I'm good. My CT scan last October spoke of osteophytes, moderate to bad degeneration of the facets at multiple levels, some herniation, on and on. It made me even more aware of possible upcoming problems as I age and play again. And I still overdue it...it feels like I have so many things to catch up on.

Yes, my belly was very swollen for months after surgery! I looked like I was carrying triplets! It has gone down some, but I still need to lose about twenty-five pounds. But the inactivity for five years before surgery didn't help me with all the weight I gained in that time. I'm only on about 1700 calories/day (mainly because of food sensitivities...no sugar/grains, etc.) but can't seem to lose any more. Guess more walking is in order.

My surgery was a year ago this March, in 2010. It took till just a couple of months ago before I started to feel GOOD. And even this isn't the way I know I can feel, if you know what I mean. I am battling a lot of environmental and food sensitivities that started mainly after I started large doses of pain meds, but I couldn't have survived without them.

The more I do though, the better I feel, which is how it usually goes I guess. But my energy levels were really low for a long time, and I had NO appetite for months, none. Part of that was morphine withdrawal though, if you go back into my story.

I would suggest that your belly is swollen because even though you had one of the least invasive fusions with the XLIF, your surrounding tissues still had to deal with a lot of insult...things were pushed around, bruised and squished during the surgical process, and your gut will naturally slow down because of being handled like that. If I'm not getting into too much information, if you are not 'regular', your belly will be distended just from that, along with the other swelling. My belly went down a fair bit after my system started working. You are still VERY early in the healing process, as much as it feels just the opposite

As well as making a list, can you take someone with you, perhaps someone who has a little knowledge about medical stuff, either through experience or training? That might help get your mind back on business Apparently I recommended a doc out west that was easy on the eyes too...too bad I didn't get to enjoy him too

As for the nasty nurse...kill her with kindness, and if that doesn't work, just keep going around and above her Some (not just women) just have a superiority issue and can't handle anyone questioning anything. It's your body, your future, your happiness. Plus with a little luck, you won't have to see her too often; that makes it easier to bear for me in similar situations

Can you ask a specialist, if not your surgeon, about the reason behind your possible bone deterioration? Something sounds wrong to have that happen that fast when you had such a good bond density report pre-op. And I think there are medications to help with that too, that you can ask about. Maybe someone else with more knowledge of this can chime in????

I have other stuff to chat about, but will quit for now so not to bore or overwhelm you! Thanks for the kind words...I just try to pay it forward here. Without all the help from others here, I never would have found a solution.

Good luck...you have a lot of things to look into! Good on you for that rapid appointment

[NancyC]

Hey Nancy, sorry for the delay, but I'm seldom on the computer these days. I try to check in once a day if possible. That's more than I do, Katie!

I'll answer the 'how I am' question first, hopefully to give you some encouragement and well, hope . I will not tell you that I am pain free, but it is so close that it doesn't matter any more. It only gets bad when I garden for hours or stand on hard surfaces for extended periods. But I think most of it is muscle/core strength related even though my latest CT scan sounded almost as scary as pre-surgery. Why, Katie?

I am now able to garden for hours at a time (even if I pay for it!), and started an office job almost a month ago, putting in thirty-six hours or more a week. Plus I have horses that I play with & currently acting as grandma to two new batches of chicks, as hens are setting and hatching out babies all over the place and needing new pens set up, etc. Plus I am working on some art commissions that are way overdue. Oh yes, and am a real grandma to my one year old granddaughter . She was born just weeks after my surgery. Good for you! That sounds exciting!

I'm still on 30-70 mg of morphine/day, but mainly at night as my bed seems to make things worse, even though it is fairly new and pretty high end. As long as I am up and moving instead of sitting for long periods, I'm good. My CT scan last October spoke of osteophytes, moderate to bad degeneration of the facets at multiple levels, some herniation, on and on. It made me even more aware of possible upcoming problems as I age and play again. And I still overdue it...it feels like I have so many things to catch up on. I find that too - lying in bed makes things worse. Oh! Now I see why you are scared a bit of your CT scan results. I'm going for a CT on June 14th to see what is happening with these crumbling bones.

Yes, my belly was very swollen for months after surgery! I looked like I was carrying triplets! It has gone down some, but I still need to lose about twenty-five pounds. But the inactivity for five years before surgery didn't help me with all the weight I gained in that time. I'm only on about 1700 calories/day (mainly because of food sensitivities...no sugar/grains, etc.) but can't seem to lose any more. Guess more walking is in order. I wonder about that. I hardly eat - low fat yoghurt and an apple is enough for one day, some days I forget to eat. But I still have the swollen belly and my navel is pulled to one side which worries my doctor (and me!)

My surgery was a year ago this March, in 2010. It took till just a couple of months ago before I started to feel GOOD. And even this isn't the way I know I can feel, if you know what I mean. I am battling a lot of environmental and food sensitivities that started mainly after I started large doses of pain meds, but I couldn't have survived without them. No way could I have survived either! Did you read about that woman (Anna I think her name is) who is allergic to narcotics and is living on paracetamol [Tylenol]? I don't know how she does is - bless her.

The more I do though, the better I feel, which is how it usually goes I guess. But my energy levels were really low for a long time, and I had NO appetite for months, none. Part of that was morphine withdrawal though, if you go back into my story. Yup. I take methadone, and that's what kills the appetite. I have lost a great deal of weight, except for the belly.

I would suggest that your belly is swollen because even though you had one of the least invasive fusions with the XLIF, your surrounding tissues still had to deal with a lot of insult...things were pushed around, bruised and squished during the surgical process, and your gut will naturally slow down because of being handled like that. If I'm not getting into too much information, if you are not 'regular', your belly will be distended just from that, along with the other swelling. My belly went down a fair bit after my system started working. You are still VERY early in the healing process, as much as it feels just the opposite

As well as making a list, can you take someone with you, perhaps someone who has a little knowledge about medical stuff, either through experience or training? That might help get your mind back on business Apparently I recommended a doc out west that was easy on the eyes too...too bad I didn't get to enjoy him too You make me laugh! Thank you!

As for the nasty nurse...kill her with kindness, and if that doesn't work, just keep going around and above her Some (not just women) just have a superiority issue and can't handle anyone questioning anything. It's your body, your future, your happiness. Plus with a little luck, you won't have to see her too often; that makes it easier to bear for me in similar situations Actually, I sat down and wrote her a letter from the heart. I explained how she was important in helping me in my quality of life and I wasn't nagging her to be a *****, just that I wanted to get better as quickly as possible and she had the power to help me. She actually THANKED ME, so everything is okay with her. What do they say? Catch more flies with honey...

Can you ask a specialist, if not your surgeon, about the reason behind your possible bone deterioration? Something sounds wrong to have that happen that fast when you had such a good bond density report pre-op. And I think there are medications to help with that too, that you can ask about. Maybe someone else with more knowledge of this can chime in???? He is very easy to talk to, and teaches at one of the universities here. I am going to make a list and thanks to you, I will put this on the list to ask him.

I have other stuff to chat about, but will quit for now so not to bore or overwhelm you! Thanks for the kind words...I just try to pay it forward here. Without all the help from others here, I never would have found a solution. And you are paying it forward. Thank you with all my heart. I hope I can do as much for someone else!

Good luck...you have a lot of things to look into! Good on you for that rapid appointment

Thank you So much for everything. We all need each other here and bless you even though I am not a religious person!

Hugs, - Nancy