Unfortunate Outcome from ADR

[Harrison]

One of the many challenges that I have as the owner & moderator of the forum is to foster an environment that balances the "good" outcomes of ADR with the "bad." We, the community, are lucky to have members that care enough to share specific aspects of their pre- and post op experiences.

Bob is a unique member -- he's taken the time to advocate for his wife, as her ADR outcome is nowhere near what they had hoped. I thanked Bob for eloquent replying to my email, and asked if I could share it with you all. He kindly obliged; see below for his thoughtful message.
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Rich, I appreciate your concern about Janet.We have not been able to move into the house you talked about and she has not been able to see if living with a pool will benefit her. It's a long story. Hopefully we will move in sometime in the next four months.

It is difficult to know what to say to someone who continues to suffer. We can say, "I'm praying for you, You're in my thoughts, Hope something comes along, Don't give up, etc."If it helps with your perspective, this is what goes through our minds, "We're screwed, There is no solution, We are alone, It's not going to get better, We made a huge mistake"

I certainly have a different perspective than before and quit visiting the forum because it was depressing to me. My reason for returning was your continued requests for updates and recent conversation with a friend in which we talked about many previous posters and their unsuccessful outcomes. I was surprised how many names came to us so easily and while I didn't write them down the number was about 15 individuals. Coincidentally I watched a presentation on the UW Medicine channel where we saw a surgeon we know discussing the present state of disc replacement.

I must have missed something dramatic in the last 6-8 months regarding success rates. More than one poster has referred to +90% while respected spine surgeons are using the FDA Charite' study numbers. This is not a small difference and anyone who is on the fence about this surgery cannot help but be influenced by the purported high success rates (I know we were). Janet is a dismal failure and I am highly sensitive to exaggerated claims. Even with all my attempts to be objective the statement made to me that " a recent study indicates the Dr is getting over 90% good to excellent results' worked on my subconscious. That same effect cannot be discounted when people read of your 86% 'success rate'. The words unscientific, may or may not be statistically valid, and any other disclaimers, will not be noted in the subconscious but 86% success will. I know that you believe the overall success rate for disc replacement will be close to your survey results, I do not. I hope I am wrong and you will be proved correct. I hope that no one puts undue weight on your survey results and makes a decision they regret.It is my goal to be a helpful poster.

Bob

[Alastair]

Hi Harrison,
I think we should all be aware of the ADR "Failures", and Thank you Bob for coming back and telling us about it - - - thats so brave!!

Everyone should be told how big a surgery this is before they have it - -- -- unless its absolutely vital stay away from surgery!!

I remember Janet and Bob coming back from Germany and Janet was an "Ideal Patient" yet still in pain months on.

There is nothing anyone can say which puts this right, I can only admire their courage in dealing with this as they are. I hope things ease for Janet in the future.
Best wishes
Alastair

Janet - I'm sure it is no consolation but you are not alone. At 7 months+ post op and still in constant pain, I think, unfortunately, I can now join the club of failed ADR patients.

I went to one of the best surgeons in the world who thought I was an 'ideal candidate' and my surgery was technically successful. No one seems to know why I'm still in pain and I've now been offered fusion - which I am extremely reluctant to undertake as I do not understand how it could possibly get rid of my pain if ADR hasn't.

I can't say I regret having the surgery because I would have always wondered if it would help, but I can say I went into it with a hugely positive outlook, utterely convinced that at long last it would be the end of a 6 year nightmare.

For months I told myself I was just a slow healer and it would be eventually OK but now I can no longer kid myself that it's early days.
Accepting, as I now do, that ADR has not been the panacea I had expected is more difficult and depressing than I have words can express. If I am to spend the rest of my life in pain (and pain killers are no longer giving me relief), unable to do the things that I love - well frankly I don't think that kind of life is actually worth living.

[Justin]

Bob and Janet:

I wish you both the best and please know that your input on this forum is priceless. Thank you both for your courage and honesty. Janet: I hope your posts will be filled with good news in the future!

Justin

[tisury]

I am also a memeber of this failed ADR club - definetely not by choice. I can say ditto on just about everything that Vicky said. It is so depressing. I had and still am getting many conflicting diagnosis. Currently my options are trying nucleoplasty, a spinal cord stimulator, or going overseas where 2 of the well known doctors which I found via this forum, are fairly sure another 2 level ADR surgery will solve my problems. They are not as confident as I had hoped though and they also want to do their own diagnostics, as even after reviewing all my films and reports they feel my case is still not a clear cut one. I am about at the end of my rope. I have agreed to try the nucleoplasty. If that doesn't help at all, I will probably be heading overseas even if it puts me in the poor house. I am just so frightened of having another 2 levels done and still ending up in the same pain as I am now or god forbid, worse. I know I am not strong enough to handle another failure of that magnitude. At this point though, I feel as Vicky does, that life like this is not worth living. This is not living - it is merely existing. I pray that all those still suffering find the answers they did or at least some relief.

tisury,

I'm curious to know why just the one level at L5-S1 was done. You say you have "Degenerated disks" at L3-4 and L4-5 as well. Did you have a discogram test at those levels, and if so, did they test positive (reproduce your pain)? I have tested positive at the same 3 levels (L3 - S1) with the discogram test; but, due to osteoporosis, had only a one-level fusion done at L5-S1, which was my worst pain generator. Even though it was just the one level that was fused, it was thought that it would still significantly reduce my pain. It has not. I too now am considering going to Germany for ADR at the other 2 levels.

[florihupf]

Vicky,

I still had a lot of pain seven month post op, but at around 24 month it went away.

[tisury]

Hello Stephen,

Only one level was done based on the last discogram that was done before my surgery. I practically begged the surgeon to just fix all three while they were in there, but was told that since L3-4 and L4-5 didn't test positive they wouldn't touch them.

I don't know how to make this a short story, so forgive me if I bore you to death. I have had so many conflicting opinions -as others have. Why is it so hard at times for them to pinpoint the cause?

So,the first 2 surgeons (an ortho and a neuro from the same hospital) say they can't find anything significant and I will just have to live with it.

The next, a neuro surgeon did a myelogram and extension/flexion xrays and says that there is excessive rocking and sliding motion at L4-5. Nerve root is inflammed. He sends me to an ortho surgeon who was to assist him with a one level fusion.

The ortho doc thinks there are additional problems especially at L5-S1 which is totally black and flat on films. He sends me for a discogram, which finds ONLY L3-4 to be a pain generator. Actually that was the only level that I ever got any relief- very brief- from the many injections I had done. Based on the severe degeneration at L5-S1, the L4-5 issue and the discogram saying that L3-4 is the pain generator - he feels my only option is a 3 level fusion - which he refuses to do on a woman my age. He sends me to another doctor who is participating in the Flexicore clinical trials in hope of a better option.

This new doc doesn't trust the facility that did my first discogram and sends me for another. This one comes back that ONLY L5-S1 is a pain generator.

I started out saying I wouldn't let anyone touch me until I could get at least 2 of them to agree, but.....I was so tired of being bounced around and being in pain and my doctor seemed so confident that I went through with it even though I had my doubts. The only thing the surgery helped was some of the weakness in my legs and one specific area of pain that was in my back. The rest remains the same.

After surgery, the same people I saw before surgery (PM doc and physical therapist) are telling me they can't make me better because L3-4 is a problem and always has been. Now before surgery, they weren't confident enough to say this.

I am still getting conflicting opinions. Who do you trust? Who do you believe? I went for a positional MRI because my pain is worse when upright or sitting and so much better upon waking or after laying down for a couple hours. This shows that in a sitting position, 2 nerves are pinched by my bulging discs and the pain patterns make sense with these findings. (Regular MRI shows nerves close to being impinged but no actual impingement) A post surgery discogram in Nov 2005, came back negative at all levels but notes that I should have further diagnostics (selective nerve root blocks) done at L4-5.

Of the 3 discograms, there is only one that I can remember any part of or remember the pain I felt - the 1st one. Still haven't determined if that is an issue. I sure don't have much faith in discograms.

I wish I had found this board long before I did. I did do research, but I think I may have been a little more persistent with the knowledge that I have gained from all the great people here.

I see you had the Nucleoplasty done - did it help you at all? If so, how long did it last? Did you know it worked right away?

Have you had any of the German doctors review your films yet? I sent all my stuff to two of them. I was impressed with both. Their compassion, their staff, their helpfulness and the fact that they take the time to answer your questions without acting like you are just a PIA.

I do think my surgeon did what he thought was best and he continues to try to help me find the help I need.

Well, I have rambled on long enough. For those that have heard my story before, I apologize. Feel free to email me if you want to. I haven't been on the boards much lately. Trying to keep working is killing me and I just feel bad not having anything good to say. SOME DAY hopefully I will be able to report good news. Best wishes to you.

Florian

Thanks for reminding me of your situation but you are VERY unusual. I know there are a very few people who take a very long time to be pain free but this is SO rare. Failed ADRs, sadly, are far more common.

For months I clung to the hope that I was like you and eventually things would come right - especially as naievely, I never even considered my surgery would be anything other than a complete success.

However I am not improving at all and now, for reasons I myself don't understand, I have given up hope.

I would willingly go through further surgery - fusion - if it would get rid of my pain but I just do not undertand how it could.

I am at a complete loss as to what to do next. I can't sit back and do nothing - except perhaps slit my wrists. SOMETHING must be causing my pain and I MUST continue to try to find out what it is and to try do something about it. But I feel as if I have seen the entire medical profession of the UK (as well as some Germans) and don't know where to go from here.

Bob's words "We're screwed, There is no solution. We are alone, It's not going to get better" is exactly how I feel. Praying for me, hoping for me, supporting me is greatly appreciated but ultimately doesn't change the reality.

There are three things that people on the board could do for me:-

1. (which I have asked fairly unsuccessfully several times) Tell me if you know of anyone else (apart from Florian) who was still in a lot of pain at seven months but was eventually pain free.

2. Explain to me how a fusion could possibly remove the pain when ADR hasn't and facet joint injections haven't and in fact it is no longer clear even where my pain is coming from.
3. Give me some idea about what to do next to find out where my pain is coming from.

A personal email would be best if you don't mind as I mostly stay away from the board these days -like Bob, I find it too depressing.

A very big thank you in anticipation.

Vicky

Tisury,

I enjoyed hearing your story, not because of the ordeal you've been through, but because I can relate to your frustration. I went through a year of diagnostic tests (a slow process due to HMO problems - I could write a book) and literally crawling everywhere on my hands and knees due to unrelenting back spasms. 2 out of 4 surgeons I saw told me unequivocably they would NOT do a 3-level fusion. I settled for the nucleoplasty on the advice of my PM doc (who did the procedure). Unfortunately, it did not relieve my pain in the slightest. After that, I started looking into the possibility of multi-level ADR in Germany and had all my films reviewed by Fenk-Mayer and Bertagnoli. I was set to schedule surgery when I took a precautionary bone density test (DEXA scan) and found out I had severe osteoporosis, a contraindication for ADR. They wanted me to wait and treat it; but with slow progress I saw Dr. Regan in L.A. who felt a one-level fusion (TLIF) at L5-S1 might help enough, leaving me with the possibility of having ADR at the other 2 levels later. After reading all these posts about failed ADR's, it's making me very nervous, particularly with the tremendous expense and trouble it would be to go to Germany for the procedure. But then I wonder, what other options do I have at this point and can I endure the rest of my life in this horrible pain (so bad that I cannot work and rarely leave home) without taking perhaps the only and best chance that I've got, even if it fails?

Regarding the discogram test, I have heard that it's reliability is questionable. And just as with surgery, the experience of the physician and the methods used can make a big difference in the results, as well. I have read that the source of back pain is accurately diagnosed only 15% of the time. In the recent Proposed Decision Memo from the Centers for Medicare & Medicaid, which explains their rationale for proposing not to cover ADR (with Charite), it states:

"Discovering the cause for nonspecific low back symptoms remains challenging. Haldeman states ��we do not know the origin of low back pain in the majority of cases�� and attributes this conundrum to the unique anatomic complexity of the spine (Haldeman 1999). Neurophysiologic mechanisms of pain sensation are poorly understood, adding to the difficulty in localizing the pain source (Haldeman 1999)."

That said, I guess the best we can do is to utilize the diagnostic tools available to us as best we can and try to get as much consensus as possible from physicians before deciding on which procedure to try next. In the end, we never know for sure what will work and what won't. That's the risk we all take. As they say, try conservative procedures before opting for more serious surgeries. Do your research on nucleoplasty, exactly what it is and what specific conditions (i.e., contained herniations) it is supposed to be effective for. I wish you the best of luck with whatever you end up doing. E-mail me anytime if you'd like.