[Artificial Disc Replacement / Revision] L4-L5 Prodisc ADR removed and revised to XLIF and PLIF

[Liz]

I’m 5 months post-op from having my L4-5 Prodisc removed and fused with XLIF with posterior instrumentation. Unfortunately, I had severe complications and I almost bled to death. My L5-S1 Prodisc remains in place. I’ve waited to post until things have settled in a little and I was hoping to post a positive outcome. I've been putting most of my energy into my recovery.

When my surgeon went in to remove the L4-5 Prodisc laterally from my right side the Prodisc was not even visible… the Prodisc was fusing tilted over to the right side and there was a ton of bone. After significant bony work doc was eventually able to reach the keel on the upper (superior) endplate but the Prodisc would not come loose b/c there was significant bony ingrowth on the endplates. Therefore, my doc slightly distracted my spine to try and get the upper endplate loose. When they did this my inferior vena cava (IVC) tore where it meets the right iliac vein and it caused a massive hemorrhage… my surgeon said the tear was like a shark bite out of my vein. It tore b/c my anterior longitudinal ligament (ALL) was scarred down and had formed an adhesion on the inferior vena cava from my Prodisc op 2 yrs ago.

Fortunately a great vascular surgeon was available; unfortunately my doc was in my psoas muscle and not in the right “portal” for lack of a better word to access the unexpected IVC tear. The vascular surgeon had to very quickly extend the horizontal incision over my right hip that was being used for the XLIF anterior and quickly dissect/cut through my internal and external oblique muscles, my transversalis muscle, and my psoas muscle to find and suture the tear. All the docs thought i was going to bleed to death. I had 9 transfusions in addition to cell saver… I lost over 5000 cc’s of blood.

Before docs sutured the tear they were able to remove the Prodisc while the vascular surgeon applied pressure to the tear with a sponge stick to temporarily stop the bleeding. My spine collapsed when they removed the Prodisc but they were able to put in a peek wedge/cage with BMP and 2 long lateral screws to stabilize the segment. The operation took 8 hrs.

I was in the ICU for 3 nights and I remember almost nothing about it, which is probably a good thing. I was given 21 liters of fluid in the ICU to raise my blood pressure and help with dehydration from the surgery.

My right leg swelled to the size of a tree trunk b/c of the IVC/iliac vein tear. My body also swelled b/c of the trauma as well and from the 21 liters of fluid. I really thought my leg was going to burst it was so tight and painful. I had internal hematomas in my abdomen and in my legs. Apparently I kept saying I was leaving the hospital so I had an alarm on my leg while in the ICU that would go off if I got out of bed (for safety reasons), but I probably didn’t even realize yet that I couldn’t walk. Apparently I was a bit of a mess.

Three days later after I was stable from a vascular standpoint my surgeon put in a rod and pedicle screws percutaneously on the left side only for stability; he couldn’t put in posterior instrumentation on the right side b/c too much bone was removed during the removal of the Prodisc. He couldn’t put in the posterior instrumentation during the initial operation b/c of the length of time I was under anesthesia as well as the amount of blood loss. I was in the hospital for one week… i was not allowed out of bed until the 5th day post-op (which is when I politely demanded that the catheter be removed).

The pain post op was absolutely horrific – off the charts -- and i really can't believe i'm still alive to be honest. I think the pain was so severe b/c of the large piece of my vertebrae that was removed and all the bony work docs did as well as the fact that my abdominal muscles were cut. My psoas muscle really took a beating in order for docs to access the IVC tear. I had blood taken every few hours in the hospital and i hardly slept.

In order to access the IVC tear docs had to quickly cut through my oblique muscles, transversalis muscle, and my psoas muscle… I have a 7 inch horizontal incision (started out as 2 inches). B/c they had to keep the psoas muscle widely distracted for 8 hrs and b/c it was cut I was unable to lift my right leg AT ALL for 6 weeks. It really concerned me and made me empathetic to people that are never able to lift a leg. Docs weren’t sure how much strength I’d regain. As a former athlete, I don’t think I could live with that disability. I also had numbness from my incision down to my knee in my quad, inner thigh and groin. I wore a compression stocking and kept my rt leg elevated until the swelling subsided, which happened after a few wks.

I had daily injections of the blood thinner Lovenox into my abdomen for the first 6 wks post-op. This was precautionary so that the other veins to my right leg did not clot. When the ultrasound of my legs at 6 wks post-op showed no DVT and the blood flowing well at all the veins I was taken off of the blood thinners. While my IVC is now thinner than normal at that level, the other veins have compensated for it…. it’s amazing what our bodies can do. The IVC is strong and should not re-tear. I really had an amazing vascular surgeon.

My docs thought my leg strength would improve and fortunately it has. After 6 wks I could slightly lift my leg from a standing position and by 8 wks I could slightly lift it from sitting and lying down. For a while my rt knee would buckle b/c of it but it’s almost gone except for when I go down a stair it’s still buckles a little, but much better.

My docs have never seen something like my case and they never imagined a vascular injury would occur from the lateral approach.

I started out stretching in the pool and walking a little once the incisions fully healed (maybe 4 wks post-op). Walking on land was excruciating I think b/c I think my degenerated facet joint was still taking a beating where the vertebrae was cut out on the rt side. At first I had to just let the psoas and other muscles heal so they did not re-tear with too much stretching but now I stretch a lot to keep my right hip loose so that the scar tissue does not freeze it up permanently. Initially I was using a wheelchair or walker, then a cane, now nothing; i still walk with a slight limp.

I started PT early at 4 wks post-op. At this point it was just to work on my left IT band as it was super tight and it had a large hematoma from lying on my left side during the 8-hr revision as well from the IT band being stretched to open up my pelvis on the right side. I couldn’t lie on my left side to sleep nor even bend my leg back almost at all (heel to butt). After a lot of PT and stretching it is now fine. My PT also did some gentle range of motion stretches for my hip flexor and ultrasound and massage on the adhesions as the inflammation calmed down. I waited too long to start PT after my Prodisc op and I believe it is one reason I have so much abdominal scar tissue. Now I’m doing more abdominal and psoas strengthening exercises and stretches.

I still have severe pain with walking and my standing and sitting tolerance is very limited; i pretty much lie down for 23 hrs a day, so I have no quality of life. The severe bone pain from the operation has subsided, i just have spasms b/c the construct is still healing.

I used to run up mtns, ski down anything, carry a backpack for wks at a time, bike, play tennis, etc so I’ve been trying to push myself but my body really won’t let me much still which is beyond frustrating as sports are what keep me balanced. I don’t expect to ever be pain free after two massive operations, but I just want to walk again without severe pain and let the pain be background noise. My spine is in too much extension so I will get only better with exercise and core stabilization. The L5-S1 Prodisc could be contributing to this excessive extension pain but i may never know.

anyway, i really can't articulate how painful and challenging the recovery has been for me. I am fortunate to have an amazing family that has supported me through this revision, but they are definitely worn out too. It’s been really hard for them to watch me suffer so much but not be able to make me better.

I researched revision options and met with experts in the field of disc replacement and scoliosis for one year. i put everything into this revision making me better after never doing well from the Prodisc op, which failed for a variety of reasons. I'm trying to stay positive and i'm doing everything i can to recover, but there are many moments where i'm just losing my fight as everyone can only take so much pain for so long. I have trouble with a lot of medications so I’ve been under-medicated over the past few years. It's been especially hard for me as i used to be an athlete and I still have pain with walking short distances.

B/c of the vein injury i really can never remove the L5-S1 Prodisc now without significant risk. I was advised to wait and remove the 2 Prodiscs separately b/c lateral removal of L4-5 and anterior of L5-S1 would be too painful (even though i ended up with that pretty much anyway). Also it was the belief that less is more in terms of sorting out pain generators which i'd agree with. I know L4-5 was the worst level and all specialists i consulted agreed on this so i hope removing it gives me enough relief once I fuse and stop motion at that segment.

eventually i'll have to fuse L3-4 but b/c of my scoliosis (thoracic with lumbar compensatory curve) I’d probably have to fuse up into my thoracic spine to balance the curve. If I did that I’d probably have to remove the L5-S1 Prodisc b/c it could fail below a long fusion. This would be a massive undertaking which I can’t imagine enduring. For now, I’m taking things one day at a time and my surgeons are hopeful in another year I’ll be better, but they really don’t know.

I have a lot of nerve damage from various causes… some to L5 for waiting to long to have my Prodisc op (I had foot drop pre-op), some perhaps from the Prodisc op, and potential damage to my lumbar plexus from the revision op based on results of a recent EMG as well as my symptoms. Something from the level of the fusion could be causing the abnormal results or L3-4 could be causing issues. B/c docs had to so quickly cut through my muscles to access the tear my right upper/inner thigh is completely numb still and my local vascular doc thinks it is permanent. I can live with that part it’s just annoying. He said when nerves are stretched that the numbness subsides in 2-3 months but when cut he said it’s permanent. I asked him about B12 injections for nerve regeneration and he sort of laughed and said my deficits were beyond B12! I’m still taking it just in case. He also said b/c the nerve endings are exposed now that they are causing pain (sometimes shooting pain) and they are sensitive to my muscles. I thought this was perhaps nerves regenerating but they are just misfiring... nerve issues are over my head.

I often have severe pain around my right hip and groin line at top of my leg. I’m more concerned about my lower leg and foot pain and it’s hard now to sort out what is causing it. If scar tissue forms on the lumbar plexus it can cause permanent, severe leg pain. I still have some weakness in my quad and hip flexor but it’s much better than it was a few months ago.

I was anemic when i left the hospital but that has now resolved and my RBC, hemoglobin, hematacrit and platelet levels are pretty close to normal now after being extremely low.

i don't want to talk about who performed the revision b/c of the complications. i honestly felt i was in the best hands for my situation based on my gut and loads of research so I don’t have any regrets for this one; accidents happen. i believe the docs that operated on me are such compassionate people in addition to being great surgeons and I have a lot of respect for them. It was a stressful operation for them as well.

In terms of lessons learned with the revision and what I would do differently… I would DEFINITELY make sure a great vascular surgeon with spine access experience is attending the revision (as well as the initial ADR op if possible). Some ortho/neurosurgeons like to do their own access for ADRs and for revisions, whether lateral or anterior, but I would insist on having a vascular surgeon there in case of any complications. If an experienced vascular surgeon had not been available I very likely would have bled to death on the table.

I consulted with experts in the field of artificial disc replacement and scoliosis revisions with very little concensus on how to approach a revision as well as varying opinions on what caused my ADR failure. For my case surgeons varied on whether to use a posterior dynamic stabilization (PDS), fuse in place (with removal of facet joints to eliminate overdistraction), or remove L4-5 lateral or remove both L4-5 and L5-S1 anterior and fuse along with fusing L3-4 (one w/PLIF, one w/XLIF). A few surgeons also wanted to do a wide decompression at L5 for my leg pain while others said nerves are clear now and it’s old damage. There is very little evidence in the literature at this point as to what is the best approach for revisions. It really comes down to what each surgeon is comfortable with, and not many are trained to remove keeled ADRs, esp at L4-5. It is really hard for patients to know what to do, esp while in pain and just wanting out of it. I think any surgeon putting in an ADR should know how to remove it, but sadly that’s far from reality.

In terms of if the left or right lateral approach is better or anterior vs lateral or fusing in place, I just don’t know and every case is one of a kind. If you are facing a revision, get multiple opinions (from surgeons, Physiatrists, pain docs) and do your research. Also go with what your gut thinks is best for YOUR symptoms and spine and then find a surgeon skilled in this area. I wasted a lot of time pursuing various PDS devices b/c it was a much less invasive option when all along I knew my Prodiscs were too tall and I don’t think a PDS alone would have halted enough motion in my degenerated facets and I don’t think many patients with scoliosis have PDS.

I was told and had read in revision reports that the bony ingrowth is weak and the endplates should come out easily, but my Prodisc was very difficult to remove due to the bone growth. For this reason I’d probably try and revise sooner than later if you know your ADR has failed and that it needs to be removed. If it looks like the ADR is severely autofusing I might consider risking anterior removal, or again having a vascular doc on hand then surgeons could switch from lateral to anterior or vice versa if needed.

There is some debate on whether or not my GORE Preclude vessel guard that was put in during my Prodisc op is still where it should be or not. The tack marks for it showed up on my post-op CT but the vascular doc said when he was in there he did not see it so he believes it either moved or dissolved. Apparently it’s designed to protect the aorta but not the IVC anyway and it’s designed for a left-sided revision for that reason. I’m not sure my Prodisc would have come out from the left side b/c of the angles with it tilted fusing to the right side with my scoliosis. If you are facing a revision and you have a vessel guard have your ADR vascular doc talk with your revision doc as to what took place during the initial op in case one side would be safer for you (whether anterior or lateral). This is something that never crossed my mind until after the revision when my ADR vascular doc asked why I, nor my revision docs, called him prior to the revision.

If I’d done nothing the doc that removed my Prodisc thought eventually I’d autofuse, but he wasn’t sure if this would result in pain relief if it didn’t fuse completely. He speculated that my facet capsules burst when I was overdistracted during the Prodisc op and synovial fluid leaked setting off facet degeneration to try and stabilize the segment (hence the severe pain after my Prodisc op). I also may have grown so much bone from the vertebral bodies b/c the Prodisc was not moving much. I had lateral bending x-rays which is how it was first discovered that my L4-5 Prodisc was not working properly. This could have resulted from the asymmetric load of my spine with the scoliosis. My Prodisc surgeon speculated that the tall Prodiscs pushed everything up into my curve too much and they were destroying my facets on the right side from L2-sacrum (this was evident in a CT one yr post-op along with severe pain from extension and rotation). He proposed Dynesys PDS behind both Prodiscs but I was not comfortable with that option.

I believe if i'd removed the Prodisc anterior i may have also had a vein tear b/c of the scar tissue and who knows if i would have died at another facility or if they'd been able to remove the Prodisc if i did have a bleed. I had one surgeon that wanted to remove them both anterior b/c he felt the Prodiscs were too tall and I was suffering from symptoms of overdistraction, which apparently our spines do not tolerate well nor recover from. However, he was going to fuse anterior and posterior along w/fusing L3-4 (so 3 levels) and I just felt like this was going to gut me and I didn’t have that in me, even though his diagnosis was probably correct. While he didn’t think removing them would be that difficult (he does scoliosis revisions) he was concerned even if everything went perfectly technically that I could be left with chronic pain from moving the psoas muscle. There was also something about re-secting the annulus which I don’t recall.

One scoliosis surgeon wanted to fuse both Prodiscs in place with PLIF and remove my facet joints which would eliminate pain from overdistraction that way. He thought I had a 70% chance of getting a solid fusion and if I didn’t fuse then he’d remove anterior but he wasn’t comfortable doing it first. He would also have fused L3-4 with XLIF. I personally was concerned about micromovement from the Prodisc and not fusing with it left in so I opted for removal.

anyway, life is what it is and i don't understand it. I’m someone that typically suffers silently but i just wanted to share this publicly so patients really know the risk involved with a revision when they initially get an ADR thinking they can “just fuse” if it fails. The past few yrs have been a nightmare. I know many patients do very well with ADRs but just triple check that you are a proper candidate; even then it’s a crapshoot, but I know we all have to take risks when we can no longer live with the pain, and often waiting too long can result in permanent deficits (nerve damage). I think different ADR designs are also appropriate for different people. I was told I may have done better with the Activ-L b/c it comes in a thinner profile and tapers posterior (facets are not as distracted as the Prodisc); I was also told i would have been much worse off with the Charite or Kineflex (b/c of the unconstrained designs and my scoliosis).

I also think fusions are becoming much less invasive than they once were and many patients are very active with fusions so don’t be scared of a fusion if it’s what you really need. Of course fusions have their failures as well. I was not aware of minimally invasive fusions (XLIF and PLIF) when I had my ADRs and I was told I was young and I had adjacent DDD so I should have ADR but I’ve since met a few extremely active people with fusions. The 2 abdominal surgeries have really done a number on my body where as i hardly felt the incision for the pedicle screws, but the area is tender. Plus, I never should have been an ADR candidate with my scoliosis, but 4 surgeons thought I’d be OK so I went for it with an experienced Prodisc surgeon. With a new year I’m trying to look and move forward, not back, as the past is what it is and you can’t change it.

Sorry this was soooo long but I wanted to fully explain what happened.

I hope 2010 is filled with less pain for everyone!

Liz

[ajj1001]

Thanks for sharing your story. I could only read it quickly as it was so upsetting but I will come back to it when I'm feeling a bit stronger. Hope you can start to move forward.

alison x

[Liz]

thanks alison... i didn't mean to upset you nor do i want to scare people; that may be one reason i haven't posted until now as many people are barely hanging on as it is and i know we all do the best we can given our circumstances. i've really been torn how to handle this to be honest. i really haven't talked about my situation much publicly since the initial ADR op b/c i prefer to post positive, rather than negative posts, to help patients but i also need to be honest about what's happened in case it helps someone. the post is not for my benefit and i'd be happy to soon forget what happened so maybe i'll delete it if it's more hurtful than helpful, i don't know.

i also know that you made the best decision for YOU and having a doc that did right by you the first time instills trust and confidence and it sounds like he'll be there for you for the long haul. i have a lot of respect for your positive attitude and how you look at life given your situation, all the while supporting spine patients, so hang in there.

Liz

[ajj1001]

Its completely ok posting, I think its really important to be honest about what is going on. No revision surgery is ok, we all go through such dreadful times. It upset me because of the awful time you had been through and had only just shared fully about it. Was also scary as removal of my upper adr is still a possibility but i'll face up to whether I want to risk then if it becomes an option. Having a cry can be very theraputic! I'm here for you. x

[Katie]

Liz, first of all, thank you so very much for having the courage to post this. It had to have taken a great deal of energy and strength to do so. And please, please do not take it down. This is all part of the education process. So many of us, me included, are anxious to dive into surgery to try and relieve the pain we all suffer. Even though we do a lot of research, it is often not enough to make a fully educated decision.

I partially blame the physicians for this; they are often tight lipped and treat us like we do not have the capacity to understand what they might tell us. When we question them, they often get angry, as if we are challenging them instead of just trying to learn. At least this has been my experience.

So yes, please leave this up, no matter how upsetting it is.

I could feel the bile rising in my throat as I read this last night, and it will take a while before that stops happening I think. I just want to cry for you, even though I know this is not your intent, not what you want.

Liz, you have done so very much for me personally. Without your advice, I would have gone ahead with my scheduled surgery in August and been saddled with multi-levels of appliances to which I am extremely allergic. I owe you my life, as there would have been no solution for that disaster, at least none that we can find yet. We may never have known what was wrong with me either, without that valuable information you passed on.

And while I was celebrating the dodging of that bullet, you were undergoing this most horrendous, life-threatening surgery. What is worse is the agony you are still in. To go through such surgeries is bad enough, but to not have resolution is so much worse.

My heart goes out to you, and I wish I could offer so much more. I hope it helps to know what you did for me, that you have made a huge difference to me, and probably to countless others who inquired about that test.

You just keep on giving, at great cost to yourself. One of my best friends is a veterinarian, and has been playing devil's advocate about my possible upcoming surgeries. I have taken in what she's been saying, but nothing hit me like your post. Her scenarios were all hypothetical; not yours.

You have sat me back on my butt and are making me take a very hard look at my options. They don't look so 'safe' anymore. (I am considering surgery with Dr. Pimenta; the exact details are not ironed out yet, but probably hybrids with ceramic or poly appliances)

Thank you for this. It is a real wake-up call to do even more homework, to not just go on my gut.

Take care, my friend. I wish I could carry some of the pain for you; you of all people do not deserve it.

Blessings...you are in my thoughts and prayers.

[Justin]

Liz,

Thank you for sharing your story with the Spine Patient Society. I hope you continue to make steady progress in your recovery. Your situation underscores that there are no "guarantees" with spine surgery, even with a highly skilled and experienced surgeon.

My heart truly hurts when I read your detailed account of what happened. Over the years, you've become like a sister to me so it is very difficult to wrap my head around everything you've been through.

Thanks again for sharing this information--I believe it helps paint the picture of the "seriousness" of any invasive procedure and reinforces that spine surgery inherently has risks.

We are here to support you as you progress in your recovery. I am excited to read about your groundbreaking progress in the coming months. As always, I am here for you 24/7.

[dalhousie]

Hi Liz,

Thanks for posting your story. You are one brave & courageous lady & my heart goes out to you. I really hope you make good progress throughout 2010 as you truly deserve it.

It's important for spine patients to read about different outcomes before they decide to proceed with surgery. At specialists' appointments you have a limited time slot & can only ask so many questions so there are many queries that remain unanswered. Last year when I was deciding whether to have ADR or fusion with my latest disc problem, one surgeon said to me if ADR was unsuccesful it could be fused without going into any further detail - but from reading posts on here it's just not that simple. You try to do as much research as possible pre op & seek out the most experienced surgeons in that field but in my post op phase I'm continuing to learn so much more which makes me realise how little I knew pre-operatively.

Take very good care of yourself & I look forward to hearing how your recovery is going.

xx

[Phylly]

Liz,
I know sharing your horrific experience with us will help many as they contemplate what to do. You are always such a wonderful support to everyone and I know from my own personal experience removing my prodiscs how hard you are fighting to get yourself back. Your surgery was something that no one would wish on others and we all hope the daily pain that you live with decreases. You are a fighter and do not think about giving up the fight. Now you will have the whole community knocking down your door with support. I am so grateful to you for the support you gave me.

You made me laugh when you emailed that I should move forward and not open the prodisc package when it arrived at my home last week. I still have not opened it but do wonder if they were too large? Your wonderful words of wisdom and common sense always makes me feel good. Please hang in there and do know that time may heal some of the pain. This is a new year that I hope brings good things. I can tell that you have so much more strength and energy. I am glad to hear that you are able to walk a bit and I understand how depressing it is not to be able to be active. Hopefully you will be able to do many things again. It sounds like you have a good team looking out for you and wonderful family to support you.
Take care and thanks for posting.
Phylly

[Liz]

Alison, Katie, Justin, Ruth and Phylly... thank you SO much for your very kind and supportive responses... i really appreciate it! i will write more to each of you later but i just wanted to quickly thank you.

and Phylly... OPEN the Prodiscs! i think i recommended opening them (maybe tonight w/a glass of wine), but not to frame them. You have some willpower. My Prodisc was long gone when i asked for it in the hospital so you can send me one if you want. Maybe you can sell them on craigslist... you hardly used them.

kind regards,
Liz

[mark-Perth]

Hi Liz

I have been totally lost for words since you told me how your surgery went. It was the last thing I expected after my surgery and has totally shocked and upset me.

After all you have been thru this is the last thing that you need or deserve. You have been the most supportive friend all while suffering greatly yourself to me and many others.

You would definately be the strongest person I know for what you have gone thru and to keep fighting. I know I would have given up long ago but your determination and strength has pulled you thru this.

I hope the slow improvement that you have had is enough to give you the motivation to push on through the pain and continue to regain your life.

I know how hard it has been for you to do this post but the help that will come from it will be greatly appreciated by many.

I know that I have tried to stress the dangers and problems that can arise removing an ADR in my post but that definately hasnt happened as people still think its easy to remove one.

Its definately not a simple or safe OP that only a few surgeons will even try and people need to think of that before having spine surgery to start with.

Hopefully people will think twice before being convinced that an ADR is the miracle cure for all spine problems as its far from it.

Thank you for posting about your surgery, it really has been a very informative post that hopefully everyone reads.

Your friendship has been greatly appreciated through everything we have been through and means even more knowing the suffering that you have been enduring at the same time. You definately are the most kind hearted person.

I hope that 2010 is a better year and you continue to improve as you definately deserve it

All the best

Mark