Failure of fusion

[Lavinia]

Haven't posted here for a while, so hallo to everyone. I had spinal fusion (T2-T12) in Nov 04, and recovery has not gone well. I am having a crosslink which has been a source of constant pain removed on March 27th. Another problem is permanent spasms from shoulder blades to waist (the length of the rods?), round the right ribs and front. It is like breathing into an ever-encroaching steel wall. The spasms are 24/7 and have got more intense in steps every few months, to the point where they are close to seriously impeding my breathing. They do not respond to any medication tried so far (pain medication, diazepam, gabapentin), and any form of stimulation (eg massage, heat, movement and stretching) trigger the highest levels. My surgeon thought it was neurological damage from the rib removal, but the pain specialist thought not and suggested it might be due to failure of the fusion. The surgeon now thinks this is a possibility and is going to look at the fusion while he is removing the crosslink.

Any experience resembling this would be good to hear, plus what the implications and/or treatment are for failure of fusion. In some ways this is good news, as improvement might be possible - I was beginning to give up hope of ever getting back even a vaguely normal life. I would be very grateful for any information or experience that anyone has.

[LindaRacine]

Hi Lavinia...

I believe it's really difficult to diagnose pseudarthrosis (failure to fuse) definitively. The most common way I hear of getting the diagnosis is that the implants break, or, the implants are removed and the curves return.

The people I know who have had pseudarthorses tell me that the pain is fairly localized right at the area that isn't fused.

Good luck. Hope you find the problem.

Regards,
Linda

[Lavinia]

Thanks Linda. I am lucky really that the surgeon will be able to check for areas of non-fusion along the whole spine if necessary, while the crosslink is being dealt with. Plus it occurs to me that the pain may be due to non-fusion rather than the crosslink. So at least one thing should get clarified.

I gather that the usual procedure when fusion fails is to graft bone from the pelvis - I would be very grateful if anyone who has experienced this or knows anything about it would let me know about it.

[geneticsgirl]

I had a bone graft from my pelvis for my normal fusion, since they were fusing so many vertebrae. I am very lucky, and I don't have any pain from the graft site. I made sure they did the graft from my left hip, so I could still bowl and not have any problems (I bowl right-handed). :)

Good luck with your surgery-I hope all goes well for you, and you'll be in my prayers.

Erin

[Lavinia]

Thanks Erin, that is very nice of you and helpful.

Just sorry to see of your problems. You are very young to have such bad ones, and isn't it disappointing when such a big op has a bad result in terms of pain.

Wish my surgeon had done as yours did! since my fusion is quite like yours - T2-T12 - and I am much older, 56.

They might be able to just take out part of the instrumentation - with me they are taking out just a crosslink. I think they might also eventually think about taking out a couple of screws. But the metalwork pain is a horrible pain and you have my sympathy. Let me know how it goes for you,

Lavinia

[LindaRacine]

Thanks Linda. I am lucky really that the surgeon will be able to check for areas of non-fusion along the whole spine if necessary, while the crosslink is being dealt with.
Having a surgeon check for fusion during surgeon is far from fool-proof. So, if you have the crosslink removed and the surgeon doesn't find any area of non-fusion, but you still have pain, it's something to consider.

Regards,
Linda

[sweetness514]

Thanks Linda. I am lucky really that the surgeon will be able to check for areas of non-fusion along the whole spine if necessary, while the crosslink is being dealt with. Plus it occurs to me that the pain may be due to non-fusion rather than the crosslink. So at least one thing should get clarified.

I gather that the usual procedure when fusion fails is to graft bone from the pelvis - I would be very grateful if anyone who has experienced this or knows anything about it would let me know about it.

Hi Lavinia,

I had my first surgery in '97, and they took the bone graft from the pelvis, wich hurt- the right hip. I had pain in my upper/right side so bad that a year or so later they took out a hook and most of my pain was gone for 6 years.I mostly had pain in my non fused areas since they were stiff and I have a few pinched nerves in my neck. What happened after those 6 years in 2004; I broke a rod. The pain was sharp, and eventually all the screws from that side came loose and I have to say that most of my pain was from the hardware and not the bone fusion failing in that area, b/c I had no specific pain for six years until the rod broke and my fusion did not heal well from the beginning, obviously.

So last December, they opened me up again, from t5 to l2(wich is the whole lenght of the fusion), and they replaced the rod, put slitghly bigger screws on that side(since you need bigger ones once you replace them in order to fill the gaps that the old ones formed when loosening), put two new connectors and they added loads of BMP mixed with bone from my fusion bed where the rod broke. I didn't want them to open my hip again since the pain was bad there the first time and the surgeon didn't think it was necessary, since I had a nice fusion bed formed around my fusion.

This surgery is still hard to recover from 3 months post op now, since they opened the whole scar again and the nerve pains are still there, but I'm better, slowly. The surgery for taking out the hook was really easy compared to it though, only a few weeks of pain and recuperation, b/c the incision was small, and they didn't replace anything that time. So it depends what they do to you as far as pain goes, and also when they add fusion you have to not bend for three months at least and only walk and take it real easy, like I have and still do.

If you have more questions feel free to ask, even if we're all unique in terms of pains and recuperations we can still shed some light on some things and help each other. Good luck :)

[Lavinia]

Hi Lavinia,

I had my first surgery in '97, and they took the bone graft from the pelvis, wich hurt- the right hip. I had pain in my upper/right side so bad that a year or so later they took out a hook and most of my pain was gone for 6 years.I mostly had pain in my non fused areas since they were stiff and I have a few pinched nerves in my neck. What happened after those 6 years in 2004; I broke a rod. The pain was sharp, and eventually all the screws from that side came loose and I have to say that most of my pain was from the hardware and not the bone fusion failing in that area, b/c I had no specific pain for six years until the rod broke and my fusion did not heal well from the beginning, obviously.

So last December, they opened me up again, from t5 to l2(wich is the whole lenght of the fusion), and they replaced the rod, put slitghly bigger screws on that side(since you need bigger ones once you replace them in order to fill the gaps that the old ones formed when loosening), put two new connectors and they added loads of BMP mixed with bone from my fusion bed where the rod broke. I didn't want them to open my hip again since the pain was bad there the first time and the surgeon didn't think it was necessary, since I had a nice fusion bed formed around my fusion.

This surgery is still hard to recover from 3 months post op now, since they opened the whole scar again and the nerve pains are still there, but I'm better, slowly. The surgery for taking out the hook was really easy compared to it though, only a few weeks of pain and recuperation, b/c the incision was small, and they didn't replace anything that time. So it depends what they do to you as far as pain goes, and also when they add fusion you have to not bend for three months at least and only walk and take it real easy, like I have and still do.

If you have more questions feel free to ask, even if we're all unique in terms of pains and recuperations we can still shed some light on some things and help each other. Good luck :)

Thank you very much for the info, Linda, and for sharing your experience, Sweetness. I am so sorry you have had such a long hard journey. It is so disheartening when such a big surgery does not go well. I hope you continue to improve. I will let people know if they find out anything about what my spasms might be due to. They are a real mystery and do not conform to any post-op syndrome that I can track down. So if they are due to non-fusion it would be surprising, but the pain specialist and surgeon both seem to think that could be it. Presumably then the whole length of the fusion, since the spasms are not localised to a small area.

I shall also bear in mind that even if the surgeon doesn't find an obvious non-fused area there still may be hidden areas.

Thanks and best wishes,

Lavinia

[Rainakay]

My doctor diagnosed my pseudarthrosis about a year after my surgery (I had anterior spinal fusion) and I generally feel pain in that area. It also makes a popping noise? Just wondering if anyone has experienced that? I'm having surgery in May at the end of this semester and my doctor said FDA just approved something I think he said BME which he could use instead of taking bone from my hip. I don't know I guess we'll see what happens.

[LindaRacine]

BMP = bone morphogenetic protein

[LindaRacine]

Here's a link to an abstract from a study showing recent pseudarthrosis (non-fusion) rates:

http://www.ejbjs.org/cgi/content/abstract/88/4/721

[lrmb]

Hi everyone :) I was sorry to read about a lot of pain in this thread and I'll be keeping everyone in my thoughts for some relief.

Does anybody know what does arthrodesis to S-1 mean, in this abstract?? (as opposed to L-5 - what that comparison means in practice)

Thanks so much Linda for the info.

Laura

[CHRIS WBS]

What this abstract tells me is that fusion failure is significant in those of us who are well into our 50s and who require fusion to the sacrum. Almost a guarantee for more surgery in the future. Not good.

Chris

[LindaRacine]

Does anybody know what does arthrodesis to S-1 mean, in this abstract?? (as opposed to L-5 - what that comparison means in practice)

Hi Laura...


Arthrodesis is fusion, so they're just comparing fusion to L5 to fusion to S1 (sacrum).

Regards,
Linda

[sweetness514]

What this abstract tells me is that fusion failure is significant in those of us who are well into our 50s and who require fusion to the sacrum. Almost a guarantee for more surgery in the future. Not good.

Chris

I will add that pseudarthrosis is not always visible in bone scans and tomograms, as it wasn't with me and my ortho knew many cases like me as well. I lasted over 6 years with a non union and didn't really have pain in that area prior to my rod breaking, so many patients don't even know that they could have a failure in their fusion, so the percentages are not always accurate. But a few orthos that I discussed the issue with confirmed that it happens pretty frequently, and with patients of any age. A bummer, I know.

[lrmb]

Just wondering about this... I thought that finishing a fusion at L5 was supposed to be a bad idea, and that it was usually recommended to go down to S1 if the fusion was going to be that long. Does anyone know if I misunderstood this? - or if this research could alter opinions on that?

On a different but slightly related note, do surgeons ever fuse one part of the spine, then leave disks intact for a few levels, and then fuse another bit lower down?? (I'm asking partly out of self-interest... I have a bad disk at L5-S1, and often wondered whether, if I got surgery for the scoliosis, I could get rid of the pain from that at the same time...)

Take care everyone. Laura

[LindaRacine]

Hi Laura...

Here's the abstract for a paper on the subject:

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=15371700

While fusions to S-1 have a poorer outcome, they're often necessary. And, a large percentage of long fusions to L5 will eventually have to be extended to S-1. I think there's often a debate between saving some flexibility or getting it over with instead of waiting for the last disc to go bad.

I know one person who has two separate long fusions. Her surgeon recommended against it, but she decided to go for it anyway. Unfortunately, she has had a lot of pain, so it was probably not a good idea to do it that way.

Regards,
Linda

[Singer]

Sounds like a person with a thoracic curve is much better off, in terms of long-term outcomes, than a person with a mainly lumbar curve. That's a very discouraging thought for me.

Than again you have someone like Karen Ocker -- sixtysomething years old and fused to sacrum -- who seems to be doing great.

Try as we may, I guess there's just no magic formula to figuring all this out. Too bad....

[sweetness514]

Those are exactly my thoughts lately. I guess I'm disappointed with the outcomes of so many scoliosis surgery patients down the line, and knowing all that can happen. I know there are MANY pain free people who have amazing outcomes, and I know that some of us-including myself- have to have surgery, or it would be worse not getting it. What is so frustrating is that it took me years to accept and get the courage to have the surgery, and when I finally did, I never would have expected that revision surgeries and side effects from the surgery could happen, let alone accept them easily. I wish there were better succesful rates(almost 100%, if not all), and not so many bad ones. One of my orthos was so casual when I asked about the non union cases and broken hardware. He said that before, they put a patient in a cast for 6 months to a year without hardware and now that it's not necessary, there is that risk of the hardware breaking. I know that is a LOT of improvement( to not wear a cast), but he doesn't mean to understand all the physical and emotional pain of getting surgery again, especially when one like me has to have the whole incision opened again, and it takes months to recuperate. I'm four months post revision and still have pain and restrictions. Oh well, I have to remind myself that there are worse off people, really.

Anyways, just needed to vent and share my thoughts today. But I guess the bottom line is scoliosis is a bitch :rolleyes:

[LindaRacine]

Hi Sweetness...

I'd like to urge you to not dwell on the negatives. You have at least a 75% chance of having an excellent outcome with no complications. And, even if you do have a complication, it's VERY rarely something that will play a big role in your life.

It definitely sucks to have scoliosis, but feeling sorry for ourselves doesn't really help. You know that it could be much worse. :-)

Regards,
Linda

[Singer]

With all due respect, it's hard NOT to dwell on the negatives when you're dealing with multiple surgeries, as Sweetness is. I think she's holding up remarkably well !! :o

[lrmb]

It is hard; hopefully having this forum and community makes life a little bit easier. For me it's a great help having all you guys to "talk" to!

Laura

p.s.Thanks again for the further info Linda.

[lrmb]

Sorry for the second post... thanks also Linda for putting up the statistic about 75% chance of a reasonable outcome. I must admit that I was also pretty depressed after reading the abstracts in the earlier posts, and the greater context has helped me get some courage back. Laura

[sweetness514]

Hi Sweetness...

I'd like to urge you to not dwell on the negatives. You have at least a 75% chance of having an excellent outcome with no complications. And, even if you do have a complication, it's VERY rarely something that will play a big role in your life.

It definitely sucks to have scoliosis, but feeling sorry for ourselves doesn't really help. You know that it could be much worse. :-)

Regards,
Linda

I know how it could be worse, and losing one of my friends to cancer last Summer put things in persepective. I did say that in my post, but some days I do get negative thoughts and am saddened by some posts I read here and all the suffering that I endured b/c of scoliosis and still do. Some days are better than others, and my post was mostly about venting, and sharing my experiences and my thoughts(for that day), not feeling sorry for myself. I know I can do that here, and it's nice. But as far as some complications playing a role wether it's big in our lives, I know it could be worse but just in my case having this last surgery done took two years meeting with doctors, getting appointments, healing(as I still am); here in Canada the system works on our patience. And there are some pains that I have been living with for all my life(I have other health issues besides scoliosis), but this broken rod and non union was very hard to live with, and it did play a significant role in my life, as no pain killers helped and just walking, riding in the car, etc were SO painful and difficult. I know some people who get back pains and really hate it, and I know how all of us are brave to live with these types of pains or get these surgeries.

I know what you meant with your post, and I don't want to discourage anybody. I am a realist though. Like I said I had to have the surgery done anyways. But in my case I would have liked knowing all that COULD happen later. That's just me, maybe for some others it's not the same, and I respect that. But I didn't have the internet then. And to all those who have to get surgeries, of course be postive and try to keep things in perspective. Trust your doctor. I know that the three times I did, I took a leap of faith and felt confident. But we're all human and it's normal to have ups and downs :cool:

[sweetness514]

With all due respect, it's hard NOT to dwell on the negatives when you're dealing with multiple surgeries, as Sweetness is. I think she's holding up remarkably well !! :o

Wow..thank you so much for that :) I do get ups and downs, I'm human. All the people I know IRL keep telling me that I am courageous, even when they saw me in the hospital. They compared to some others who had much smaller surgeries who complained a lot and how I kept on getting out of bed and walked until I was exhausted. But I keep saying that I have no choice, so it's not so much courage in that case :o

I really like that we can share positives and negative thoughts on this forum, but I know that after being negative for a while a person has no choice to get on with it and look on the bright side, as I try to. I've had a really hard year though, and maybe some of my negative thoughts come from other things as well. Take it easy now ;)

[LindaRacine]

But in my case I would have liked knowing all that COULD happen later.
Thankfully, here in the States, anyone undergoing the surgery has to signed an informed consent agreement that lists the potential complications.

Sweetness, I hope you know that I wasn't trying to make it seem like what you're going through isn't awful. It really is. The good news, however, is that it can be fixed, and I have great hope that you'll be as good as new soon. :-)

Regards,
Linda

[sweetness514]

Thankfully, here in the States, anyone undergoing the surgery has to signed an informed consent agreement that lists the potential complications.

Regards,
Linda

We do have to sign one, but it's mainly about the risks of blood loss, death, you know what I mean, not post op complications later on down the line(like non unions or DDD, etc). I didn't even know that pseudarthrosis was possible(or what it was for that matter), until I visited forums a year ago. I see a lot of people here posting about going to their post op appointments to see if the doctor sees a change in the curve-even if I know that's not 100% accurate in diagnosing it-and again, I did have post op appointments but didn't know it was about that(as well as other issues, like pain). That's why I'm very skeptical in any type of statistics or even a doctor's opinion, but that's for any type of medical research anyway. All my dcotors told me conflicting opinions on the subject. My ortho told me that he's done surgery on people who didn't have a broken fusion but had a broken rod. Who knows, but getting the most info about it helps.

[Lavinia]

Just to let people know how my surgery went, especially in case anyone now or in the future has mysterious complications like me (esp. older people, more prone to things going wrong - I'm 56).

The plan was just to check the fusion and take out a cross-link. But when I was opened up, apparently the metalwork (T2-T12) had caused widespread inflammation and swelling which had in turn loosened the screws. No wonder it wasn't getting better (original surgery Nov 04). The surgeon tested every bit of the fusion by stressing each section. Apparently this is how they do it here, to see if the section of spine stays solid (good), or gives under pressure (bad). Luckily the whole of my fusion seemed solid, and he says he had no option but to remove the whole of the unstable metalwork.

I realise from this site that it is almost inevitable that my back will curve again and I will have to have more surgery. Only hope that is not for a few years. Hopeful point is that under my rigorous back care regime the curves before surgery did not increase at all in the 11 years before surgery, although they were large (77 and 52). But because of them and my forward lean I was getting increasing pain anyway. So I don't regret having the surgery, but it is a long haul.


The recovery is slow - a month post-op, I'm still having bad pain around the upper back, where apparently the muscles are 'ripped away from their spinal attachments', in the surgeon's charming phrase. But the real downer is that the surgery has greatly exacerbated the mysterious spasms. Between them and the pain I can only stay up 1 3/4 hours before lying down again for an hour, all through the day. Increasing 5 mins a day, and when I came home I could only manage 20 mins, so going in the right direction. The surgeon and pain specialist are now working together to try to diagnose the spasms, which is great, instead of a series of registrars taking the clinics. Current attempt at treatment is to try maximum doses of pregabalin (nerve drug) in case there's a neurological element. Halfway to max dose but no effect on spasms so far. Tried a TENS yesterday, which sent the spasms through the roof! So won't be trying that again. In general, anything makes them worse, even heat and stretching, and only lying down reduces them to their base state. But at least the medics have them in their sights now, rather than just giving them another 3 months....

Best to all in our endurance tests - continual marathons for some of us,

Lavinia