Decisions, decisions, decisions.........

[rosedee]

I haven’t posted for a long time partly because there has been such a lack of clarity in my situation. (Mark, I promise I will write my whole story down before too much longer!)

My ADR at L3/4 was a complete failure – absolutely no effect on my symptoms for better or worse, despite clear evidence that it was the appropriate treatment (or so it seemed then). No one could explain why I didn't even know anything had been done to my back - I only know I'd had the surgery because of the large incision at the front and the pictures of the device in my spine!

Prior to ADR my facet joints were described by my surgeon as: Mild arthritis/stage 1/2 .
After the surgery the surgeon wrote in his notes ?advanced facet arthritis. Despite having had a negative facet injection before the surgery he arranged another one, which was also negative. He then recommended a scintigraph, which found a “hot spot” on my L3 right pedicle. Infection and fracture have been excluded.

A recent CT scan in the UK has shown very clear advanced facet arthrosis, nearly bone on bone, with osteophytes and cysts (a marker of severity) on the right and degeneration on the left, though not as advanced. This, it was believed, would explain the hot spot and my continued severe pain (though not why the adr had no impact at all). This surgeon suggested that the previous negative results were probably due to poor penetration and he proposed doing it again, but under general anaesthetic. I had these over two weeks ago and, again, no effect.

Trying to understand all this a few days later, I had one of those moments when something clicks into place (not my back, sadly). Prior to my fusion 10 years ago, I was diagnosed as having Ehlers Danlos Syndrome by a professor specialising in this heritable disorder of the connective tissue. I am very clearly at the mild end of the spectrum, which means other doctors are usually fairly dismissive about its relevance, as I do not present with the extreme symptoms that usually identify it. Shortly after I was diagnosed, I discovered that one of its features is an insensitivity to dental local anaesthetics. I have had problems with these all my life, needing multiple injections for a tooth and sometimes not being able to be anaesthetised at all. As I have a lot of dental problems this has happened on numerous occasions (in the past I was disbelieved/ called a coward by various dentists. Fortunately I now have an excellent dentist who has been very interested in reading up on the dental aspects of EDS). So, it occurred to me that perhaps it also effected other local anaesthetics, even though I had not previously seen mention of this……..it does! So all the negative findings from local anaesthetics in my back over the years have been diagnostically irrelevant, probably!

I wrote to my current doctor about this and although he had not previously heard of this phenomenon, he found some references to it (there are, in fact, only 3 papers about it) and sees it as very relevant to my diagnosis. I went back to see him on Friday to review my situation. The EDS means that the negative effect of the local anaesthetic cannot be taken as diagnostic and there is no other possible diagnostic test. He thinks the circumstantial evidence (CT scan and hot spot particularly) mean that the probability of the facet joints being the source is high. This leaves me with 3 options:
1. Do nothing. There is a possibility of autofusion at some stage, but is not possible to predict and therefore it doesn’t make sense to base a decision on this.
2. Fuse L3/4, which he sees as completing the process started by the ADR. It would be a posterior extension of the lower fusion. He said that despite the degeneration at the higher levels, the fact that L3/4 doesn’t have a lot of movement in it (despite new disc) means that the likelihood of higher “domino” problems is reduced.
3. Go for facet replacement – there are 3 types currently being trialled and he is consulting on the one which he thinks would be best for me. I wouldn’t be accepted for the trial itself as I don’t have a nice neat history. His view is that the worst outcome from this would be that it did not “work” and it would then be straightforward to fuse.

So, I now have to do more research into facet replacement and make another decision. At the moment I have absolutely no idea what I’ll do. I can’t bear the thought of more (a 4th) surgery, but on the other hand, my life is so restricted by my current problems.………..

[mmglobal]

Has impingement of the facets above the fusion by the posterior hardware been ruled out?

[rosedee]

Yes, the hardware has been ruled out of the picture.

[dshobbies]

Rosedee,

I'm sorry you find yourself at such a crossroads. You don't want another surgery but don't want to live in constant pain either. I'm curious, have you discussed all of this with Dr. Z and what are his comments?

[rosedee]

Thank you for your post, Dale.

No, I haven't been in touch with Dr Z yet. His last view was what Mark was referring to that perhaps the rod from the fusion was irritating the facet. My experiences of trying to speak to Dr Z in the past (waiting nearly 3 months on 2 occasions, despite him saying he would phone me) make me reluctant to contact him. I appreciate he's incredibly busy, but the frustration and stress involved when someone says they'll do something and then leaves you hanging......... On the other hand, I think it's probably important to let him know about this at some point. I think maybe I need to wait until I have processed more the fact that having the ADR done was probably a big mistake.

[Roblin]

Dear Rosedee,
I just want to say how sorry I am for what you are going through! I can empathize with you because I too have a 2 level ProDisc failure and needing a 7th spinal surgery to remove them and fix another level. I understand the frustration with being in pain and waiting on doctors to give answers that never call back. It is an awful place to be in. I understand being afraid that maybe there isn't a fix and the fear of having to live in pain. I just want to let you know that I pray that you will find an answer and a solution to your problem. You are not alone!
Roblin

[Lyndsay]

Hi Rosedee

I wondered how you were as it's so long since you posted anywhere though admittedly I took a break from most of the forums for a while so hence I hadn't realised you'd had the ADR. I think last time we chatted it was something still in the planning?

I'm really sorry that it hasn't worked out for you & I can only hope that you get some answers really soon. As much as you may have to wait I do think you should let Dr Z know, you never know he may surprise you with a quick reply especially if you say it's urgent. I wonder if the EDS plays any part in your lack of relief?

I'm interested to learn anything you can share about Facet Replacements, I assume you mean about them being available/trialled here in the UK?

I too am still in a big mess but I now have a new Neuro Spine Surgeon who seems very on the ball. I've just had a lumber & cervical MRI ~ my neck has now also become a problem! I had some facet injections almost 2 weeks ago & all they've done is flared everything up even worse yet according to xray & the fluoroscope they're in a BIG mess with the arthritis. There is also a question over whether my ADR has moved slightly. I'm now waiting to go for CT & Myelogram then another Discogram. Once everything has been done then we can decide which surgery will be the best to go for. Anyway, I'm rambling about me!!

I really hope that you can get some answers soon. Not sure if you still have my email? I lost yours when my laptop threw a wobbly at xmas!!

Take care & feel free to contact me anytime

Lyndsay x

[Jim M2]

Rosedee,

I appreciate your dilemna. I have very painful facets after L5S1 Charite almost five years ago. Here's my thinking so far.

1. Do nothing. This is what I've been doing for almost 5 years. If auto fusion were to take place it would be due to the facets fusing. Very unlikely given the fact that the Charite has preserved motion at L5S1. If I had new imaging I suspect it would show facet hypertrophy, osteophytes, cysts...

2. Fuse. Dr. Z advised that fusion fusing facets and adding rods is only 50% successful because the rods don't always elimate enough motion to make the joint pain free. I guess this means you never truly fuse through the facets. Another approach would be to have the Charite removed followed by tradition fusion. This is very high risk for surgical complications and outcome. I'm still very hestitant to seriously consider this option.

3. Facet replacement. After such bad luck with the Charite it's extremely unlikely I'd try this. If they come up with some very simple, not-so-invasive, reversible method I might consider that. Otherwise I'm too much of a chicken.

I'll be very interested to see what you discover as time unfolds.

[rosedee]

Thank you all for your replies.

re. facet replacements. Yes, the 3 different types are being trialed in the UK, though I don't know the details of where etc. The type he thinks is best is called Fenix and describes itself as a "Facet Resurfacing System", which is somewhat different from the other 2. The company's website is gerraspine.com. It makes specific reference to using it in conjunction with ADR and states, "All Salvage Options Open – No bridges are burnt during this procedure". However, there is limited information on the site and I've emailed them with some questions.

The fusion that would be one of my options would be over the ADR, but reading your 2nd point, Jim, makes me aware of questions about this which I would need to get answered.

The EDS can't explain the absence of any response/reaction to the ADR.

I have followed your (lack of)progress, Lyndsay and been so sorry that your ADR has proved to be such a disaster and, indeed, a mistake/error to have done. Like me, your problems would preclude you from a trial, even if you wanted to consider that. Though it is possible to get this done now outside of the trials, but obviously one is something of a guinea pig at this stage.

[Lyndsay]

Hi again

Thanks for your reply. I'll have a look at the website shortly as I am certainly interested.

When I saw the NSS last month we discussed again a fusion revision & I explained my concerns which he said were well founded & that he too had been doing some research. As it is at the moment I'm going through all the new tests to confirm to him that my L4/L5 needs replacing (I discovered from my original notes that where I reported it as positive in the discogram it was noted but my original surgeon ignored it for reasons only known to him). I also asked the question that because of the problems I've had since having the Prodisc if this will exclude me from further ADR, if it were another Prodisc then yes because of the problems but predominently because of my facets.

The NSS then went on to tell me that there is a new ADR that is more natural currently being trialled by him & another northern surgeon that I could be elidgible for but also he uses Active-L which at least can be removed. The NSS also said that I should let him know the results of my facet injections because there was a better permanent solution he could offer so I wonder if he's also trialling the facet replacements? I'll definitely ask him when I next speak to or see him. I know I need to have further surgery but I'm glad that I'm not rushing into it (who wants to!) as so much seems to be changing all of the time.

Apologies for rambling (I'm good at it lol!!), my brain is a bit foggy this morning & I hope you can understand what I'm on about as it's not the most jointed of replies lol!!

Take care x

[Tim]

Rosedee

I'm so sorry to hear about your current situation. It must be so frustrating having had your ADR surgery with a top surgeon and for it to have had no effect..

Mark do you have any direct knowledge concerning the different facet technologies currently in trials or in development. The Fenix system by gerraspine certainly looks interesting and I like the idea that ‘no bridges are burnt’. If this system is effective and can be implanted without causing excessive ‘collateral damage’ then it looks pretty promising.

Mark from your experience, talking to the top world surgeons, does there yet exist an accepted protocol for ADR revision? Do the majority of surgeons favour the safer option of leaving the ADR in place and fusing posteriorly (supposedly via a gutter fusion) with rods and screws? If so what sort of results are they getting?? Have you personally witnessed or discussed the real world feasability and safety of removing the ADR via an ALPA/XLIF approach and replacing with an interbody fusion?

Rosedee, I can’t help but be somewhat surprised that Dr Z. apparently missed your advanced facet degeneration. It will be interesting to hear his response to your current predicament.

Whatever decisions you make for your future treatment I wish you all the best and hope you can stop by now and again to give us an update..

All the best
Tim

[rosedee]

Thanks for your post, Tim. You ask some interesting and pertinent questions. I realise how much more I need to find out if I'm going to be able to make a valid decision about what to do. It's also clear that if I am going to have any more surgery it's important to get Dr Zeegers opinion about it generally and, in particular, whether it would be better to leave the new disc in situ or not.

Of course I know, and knew, that spinal surgery is always a gamble to a greater or lesser extent and that the outcome could have been worse. But the fact that my decision to have the ADR was based on so much research and thought and had such apparently strong evidence in its favour makes it feel even more difficult to trust that I can reach a meaningful decision now.

Mark, I would really value your thoughts on all this.

[mmglobal]

Tim, I'm not sure about the "no bridges are burned" aspect of anything spine. I remember when the ADR doctors said... "sure, no problem, try ADR and if they don't work you can pop 'em out an fuse... no options lost".

I have spoken at length with several docs about the Fenix system. Looks good... looks minimally invasive. I guess you could say, 'no bridges burned' if you believe that the facets are already completely shot and are your pain generator.

At the conferences, everyone seems to understand that the facet repairs are going to pay off for the failed ADR patients. However, the product development process does not allow that to be the focus... only plain vanilla cases... all the talk about ADR revisions is pretty hushed. I think that the facet replacement and repair technology will be huge. The surgeons I know who are involved in the clinical trials seem to be pretty surprised at how well the patients recover. However, it's still early and we'll see about long-term when we get there.

I don't think that there is accepted protocol for ADR revision. Sadly, a substantial part of my business is dealing with failed ADR clients. (Even more sadly, most of them have problems that could have been avoided... some are just unlucky and their complications would have happened no matter what they did. But, I still see the lions share of problems being from poorly implanted devices or poor patient selection ... easy to say in hindsight.) I've taken the same clients to multiple surgeons and have listened to compelling reasons why one would absolutely explant the prosthesis, while the other would leave it in place and fuse behind. I have also seen posterior stabilization behind failed ADR and will see more soon. I have seen anterior ADR revisions both cervical and lumbar. I have seen lateral procedures, but not ADR revision. I will soon see lateral ADR repositioning... can't/won't give details until it's over.

The decision on how to remove the prosthesis will be impacted by what else needs to be done. If another total disc will be implanted (say between 2 ADR's), then you are already there for anterior surgery and an anterior access retrieval will make sense. Now, you can consider a lateral ADR, but I've only seen Pimenta talking about that. Each case is unique and revision strategies will not be consistent.

Rosadee... I'm so sorry to have watched you go through such difficult times and not finding relief with ADR. You are living the nightmare that we all feel. It's amazing to me how, as I deal with many difficult cases that span years, how the diagnoses change. A surgeon sees something that seems obvious, but he's missed it before and other surgeons have missed it before... then it turns out not to be the culprit???? Spine is so complex and many cases will never be understood. I don't think that means we should stop looking. But it does mean that Rosadee's caution is well placed. When we are desperate, we will do surgery based on wishful thinking. Some of us may be so desperate that that is not unreasonable. However, getting clear diagnoses... proving them out... will help increases our chance of success. Unfortunately, it's only an increase... nothing brings it close to being a sure bet. What I see is people having surgeries based on clear indications. It makes sense that when tests prove a pathology, when that pathology is certainly the most likely cause of your pain, give high confidence for a positive outcome. However, that does not mean that you don't have another generator for the same pain that will not be addressed when the obvious issue is dealt with.

I don't know how we are supposed to deal with this except by doing what we are doing. Expend the effort necessary to get as much information as possible so you can make an informed decision. Then proceed with the full understanding that 70, 80, 90% chance of success may sound good, but it's only good if you are not one of the unlucky ones.

All the best,

Mark

[rosedee]

Hi Mark and thanks for your post. The information you have gained about facet repairs and ADR revision from your talks with doctors is very useful to hear about.

I think one of the hardest things in trying to reach decisions is that invariably each doctor you see has at least a slightly different stance/emphasis on your situation. As you know, 4 different surgeons each agreed that L3/4 was my main pain generator (in all probability) and that ADR was an/the appropriate treatment. Of these, I had confidence in the opinion of 3 of them, each of whom was very experienced and well-regarded. And yet there were also differences in their opinions about my overall back problems. The view that the more docs you see the more opinions you get still holds true. The other side is that while I value the opinion of each of these doctors still, I have certain reservations about each of them now, for different reasons.

In addition, now that diagnostic injections using local anaesthetic are known to be unreliable for me, I am always going to be missing important data for decision-making. This will, then, increase my likelihood of being one of the "unlucky ones".

In relation to the facet replacement, my thinking currently is that I would be mad to go with it at the present time - not only is it to soon for there to be meaningful outcome data, but my back is nothing like those discrete problems that the trials are focussing on. Do I really want to be a guinea pig?

On the other hand................... I can't bring myself to have another fusion in the forseeable future......... perhaps a year's sabatical is the answer ........ but what if......... back and forth and round and round I go!