L5-S1 ADR Revision...subsidence; Germany

[jamie5136]

As most people know, I had a failed 3 level disc replacement by Dr. B in Germany. I am in much worse pain and it is worsening... My discs started to subside, but he injected me with cement all all levels accept S1, so I have superior subsidence VERY badly. For the discounted price of about 25k in US dollars, Dr. B will do a posterior DSS surgery (although that can be done by Pettine in Colorado) for much less. I have awful sitting pain and now I have pain in my legs, so I assume this subsidence (which was on early x-rays, but Dr. B never did review them) is causing it. I had some sitting pain pre surgery, but it is much worse now. Why? So, anyway, Dr. Blumenthal at TBI suggests fusing up my spine on top of all the ADR's, even though only one is bad.... L3-L4 is subsided, but the cement is holding it, even though it is not perfect.
Now the question is to leave it in or take it out. I hear all types of thoughts, but not one story of someone on here who has done one or the other. I know the risks, I know about Dr. Regan (good and some very bad stuff) and I know of Dr. Pimenta.... so hard to contact both.
I just think leaving this in (Pro-Disc L) is not a good idea and I would hate to do an "easy" surgery that will just leave me in worse pain or no change. And, to be honest, if I died on the table, I would not really care as the pain and misery I have now is horrible. So, I don't care if it is painful or dangerous. It is just one level and the lowest level. I just don't want to leave it in, simply because it is the "easy" thing to do.
Does anyone have any real experience doing either?

I am so miserable and the life I had before me as a young'ish woman is over. The ADR has destroyed my life and it seems nobody cares.

Please help..

P.S. I have had many private messages of people having horrible experiences with Dr. B. This makes me so sad as mine was bad too. He added insult to injury by overlooking this subsidence and then wanting to charge me so much to "fix" it... but will a one level posterior DSS allow me to sit or lay on my back... because I can't now.

The odd thing is, is that I can walk for miles... I have not felt like it in weeks/months, but I can walk fine.. my legs are starting to hurt as it my upper back, so I feel I must do something quickly.

I have full mobility and do yoga, but I can't sit and my whole body hurts... I can't take pain pills because they cause insomnia and I fear anti-depressants as they also cause insomnia.

Help please.

[Rob Wilson]

Shouldn't you continure your physical regimen if possible. The walking is great for your body and mind. If it does not cause too much added pain I highly recomemend it.

[fuzzy]

When you walk you don't hurt so the disks are not causing pain.

There are cases where then motion of the ADRs are exactly the thing you don't want and that may be part of the failure rate with ADR surgery.

Putting the DSS in is supposed to limit or stop the articulation of the ADR so that when you sit the ADR at S1 does not get articulated which may be where your sitting pain is coming from. It articulates more then your natural disc and that may be why you have more pain now then before surgery. Based on what I saw on my own rays it is surprising how much motion the ADRs allow and I am glad in a way that I got fused at S1. Dr. B might think that limiting motion of the ADR is the best strategy as the ADR itself is not causing pain as you have shown by being able to walk!! Another Dr. might think to play it safe and stop all the ADRs from moving to much...
I personally agree with doing the level that hurts, not more.

I don't have your answer for you but I feel you should not take out the ADR if it is not causing pain but find out exacly what causes the sitting pain which may just be the excessive articuation of the S1 ADR. A good bet is the DSS. If you still hurt after that surgery, don't give up, there is an answer. but you have a good chance of much less pain.

I am not a doctor, just a patient who works a life of advanced troubleshooting.

Don't take out the ADRs...

[fuzzy]

One more thing. Every surgeon I researched had bad outcomes. Including all the top dogs. I still feel that someone who has done 1000s and puts his neck out frequently in publications and teaching others must have more experience then someone who has done just a few and not seen bad cases.

[dshobbies]

Jamie,

We do care. And though I had a successful surgery with Dr. B and think very highly of him, I too have read his follow-ups with unsuccessful surgeries are wanting.

You mentioned Dr. Regan, some good and not so good. Though I think his people skills could improve, from what I've heard, his hands are quite skilled and he has more revision experience than most others. If nothing else, it would be worth a consultation for his opinion.

Also, though not medically savvy like others on the forums, I have to wonder, did I read correctly that Dr. Blumenthal at TBI suggests fusing a perfectly healthy disc on top of your 3 level? This does not sound right. If it ain't broke, don't fix it - but instead concentrate of the disc(s) that are causing your pain.

And if you have no pain in walking, I'd keep it up. Just for the telling, after 4 years I still have problems with sitting for longer periods of time. If a chair fits, I'm usually OK, if not, like a movie theater, I have trouble after just a few minutes. What makes it fit or not, damned if I know. Just letting you know that even if some revision is successful, your 100% may very well have a different meaning. Having said that, living a pain free life should be SOP, not a luxury. Do what you feel is best but get a lot of opinions before deciding.

Dale

[jamie5136]

I do try, but am so depressed lately, that I don't get out. And now, I think more walking and stretching is going to make the disc subside even more. Does that make sense? So, I just lay in bed... on my side of course, as laying flat on my back can hurt.

Originally Posted by Rob Wilson

Shouldn't you continure your physical regimen if possible. The walking is great for your body and mind. If it does not cause too much added pain I highly recomemend it.

[jamie5136]

See comments below....

Originally Posted by fuzzy

When you walk you don't hurt so the disks are not causing pain. I wish I had an answer for that. When I sit it hurts and when I lay down, it hurts, and I think it is the ADR's causing the pain, but I do not know.

There are cases where then motion of the ADRs are exactly the thing you don't want and that may be part of the failure rate with ADR surgery. TRUE.

Putting the DSS in is supposed to limit or stop the articulation of the ADR so that when you sit the ADR at S1 does not get articulated which may be where your sitting pain is coming from. It articulates more then your natural disc and that may be why you have more pain now then before surgery. Based on what I saw on my own rays it is surprising how much motion the ADRs allow and I am glad in a way that I got fused at S1. Dr. B might think that limiting motion of the ADR is the best strategy as the ADR itself is not causing pain as you have shown by being able to walk!! Another Dr. might think to play it safe and stop all the ADRs from moving to much...
I personally agree with doing the level that hurts, not more. WELL, THE WEIRD THING IS, IS THAT I HAD SITTING PAIN BEFORE.. NOT LIKE THIS, BUT I STILL HAD IT. BUT I NEVER HAD LAYING DOWN PAIN. SO, I AM NOT SURE IF IT IS THE INCREASED MOTION CAUSING THE ISSUE; BUT IT COULD BE. DR. B'S THEORY IS EXACTLY THIS; REDUCE MOTION.

I don't have your answer for you but I feel you should not take out the ADR if it is not causing pain but find out exacly what causes the sitting pain which may just be the excessive articuation of the S1 ADR. A good bet is the DSS. If you still hurt after that surgery, don't give up, there is an answer. but you have a good chance of much less pain. CAN AN ADR BE EXTRACTED AFTER DSS OR REGULAR FUSION?

I am not a doctor, just a patient who works a life of advanced troubleshooting. SAD TO SAY, YOU SOUND SMARTER THAN MOST DOCTORS AND I FIND PEOPLE WHO HAVE BEEN THROUGH MANY SURGERIES HAVE SO MUCH TO OFFER.

Don't take out the ADRs...

I AM GETTING OPINIONS FROM PIMENTA, PELOZA AND BITAN AND A FEW OTHERS AND THEN MAKE A DECISION.

[jamie5136]

See comments below:

Originally Posted by dshobbies

jamie,

we do care. And though i had a successful surgery with dr. B and think very highly of him, i too have read his follow-ups with unsuccessful surgeries are wanting. I get emails daily from unsuccessful patients of dr. B. He overlooked my subsidence and then wants to charge me quite a bit of money for the dss. I fell through the cracks and my x-rays were ignored until mark mintzer said, "jamie, you have subsidence!" otherwise, i was just told over and over, "you are fine and all is in alignment." well, it was not.

You mentioned dr. Regan, some good and not so good. Though i think his people skills could improve, from what i've heard, his hands are quite skilled and he has more revision experience than most others. If nothing else, it would be worth a consultation for his opinion. I am going to do that this week. Waiting on an x-ray from tbi. Takes seven days to just make a copy.

Also, though not medically savvy like others on the forums, i have to wonder, did i read correctly that dr. Blumenthal at tbi suggests fusing a perfectly healthy disc on top of your 3 level? Yes, he does. This does not sound right. Well, l34 had some subsidence, but was caught with cement, but still subsided, so this is why he wants to do all three. If it ain't broke, don't fix it - but instead concentrate of the disc(s) that are causing your pain. I agree and he will do just l5s1, but the group at tbi all said fuse all three. I guess they don't want a fusion, an adr and then another fusion.. Odd combo i guess. They also don't do dss at tbi, but pettine does, but i hear mixed reviews on him and dr. Spivak said dss is okay, but bulky and no so necessary. He said for what i need, a regular fusion is fine. I am just afraid that once it is fused, i can never get it out if needed.


And if you have no pain in walking, i'd keep it up. I am afraid i will hurt my back and now my legs feel heavy and i have sciatica, which i never had post surgery. This tells me the disc is subsiding more.


Just for the telling, after 4 years i still have problems with sitting for longer periods of time. If a chair fits, i'm usually ok, if not, like a movie theater, i have trouble after just a few minutes. What makes it fit or not, damned if i know. Just letting you know that even if some revision is successful, your 100% may very well have a different meaning. Having said that, living a pain free life should be sop, not a luxury. Do what you feel is best but get a lot of opinions before deciding. I am trying. It is costly and time consuming and the doctors are all so busy. It is sad, but when dr. B wanted my money, i got all types of attention; now that i am a failed case, much less attention.

Dale

[Maria]

Since I have no hardware but I do have a disrupted L3, previous discectomy on L4 and L5S1. L4 is still bulging and when L5S1 was as well I had a great deal of pain with sitting.. really horrible in fact.

Then about '05ish to '06 I noticed a change with regard to being able to walk much more and much less pain albeit using low dose pain medication, gabapentin and ESIs tho all same treatment for about 5 years ~ just less pain and more mobility.

Still sitting always flared everything up and made me miserable until about a year ago. L5S1 supposedly has autofused as I probably mentioned (original injury 20 plus years ago).

If this autofusion has created a lack of motion at this segment it has definately helped alleviate pain w/sitting. I still cannot sit long long periods however at least I can sit again w/o having to go thru all kinds of extremes to try and sit and have a cup of tea, coffee or a meal out with people (or even by myself).

So I still have problems at the other 2 levels tho the one that seems to have been the most problematic was dealt with even if on it's own and the relief has actually been significant.

I keep wishing that L4 might autofuse anyday now by itself...

I'm really interested to hear what the consultations will yield in terms of opinions/recommendations and what you'll be thinking with regard to these consultations.

I'd try to keep up the walking just to keep the rest of your body going strong.

[beka]

Hi there

I'm new to this particular board, but certainly not so to back pain and associated surgeries/procedures.

My worst pain is also upon sitting and it is just so frustrating and depressing. I don't know that mine has the intensity of yours, but when you struggle to ride in a car etc it limits your life so much. I do not work, and certainly could not manage out of home work. My sitting limit is about 20 - 30 mins, then I struggle to bear it.

What I really wanted to say though, is, has the suggestion been made that it is the vertebrae themselves hurting so much by having the ADR press in so hard when you sit?

The reason I suggest this is because, before my first fusion, I had complete degeneration of the disc at one level, and due to the vertebrae rubbing back and forth across one another, I had developed swelling in the vertabrae, known as Modic changes. This was extremely painful.

Additionally, when a bone is fractured, it is painful. Anyone who's had bone grafted from their hip for use in spinal fusion knows at times it can hurt worse than the fusion itself.

Bone hurts. Just my opinion but I'd be getting that thing out and going for a fusion if it ends up being deemed necessary.

Wishing you the best.

[jamie5136]

I had sitting pain before and now the three level ADR has made it worse, so something is pressing on something.... I just had another opinion on what to do. I will type it below. I want to see what people have to say. I have had so many opinons varying from posterior fusion at all three lower levels to DSS to this... all so confusing.

Okay, I have one more opinion, but still no focus on my sitting/laying pain. Dr. Scott Leary from California said to do an extraction of the sunken L5S1 level and then fuse. He must do this by going through my stomach and my back. He said a complete fusion cannot happen with just a posterior fusion. This does make sense, I suppose with the way the disc has subsided, plus why did it subside in the first place. Maybe I have some type of early bone condition that cannot be detected during surgery or on a bone density. Dr. Leary is young and has done a couple dozen extractions, but not of a Pro-Disc...this is scary!

I have been told that if a doctor does not know how to remove or is scared, then they will say, "keep it in." If they are removal guys, then they will want to remove it. Much like if you take your car to a muffler place when you are having a problem, magically, it is the muffler.


I have heard such horror stories with extraction and I could be left in a worse place than I am now. Now I can dance around, shop, hike, etc. I have leg pain now, 10 months after the 3-level ADR, but my MAIN issue is that I can't sit down... or lay down w/out having pain in the lowest part of the back that "feels" like tailbone pain... I have buttocks pain and NOW leg pain, which I did not have before, so something is changing in my back.

So, extraction and a fusion could make me worse with the dangers of not fusing or with some ventral issues.

So, I am now thouroughly confused! I could have a posterior fusion at L5S1 and "see" what happens and then do an anterior approach, but I heard this is much harder trying to do it after the fact. Although, this is what Dr. Bertagnoli suggested... he said try posterior first and then anterior. He did not say anterior and remove.



GOD, I WOULD RATHER BE HIKING, SHOPPING,.... ANYTHING NOW BUT FOCUS ON THIS!!!!



Any ideas?

Originally Posted by beka

Hi there

I'm new to this particular board, but certainly not so to back pain and associated surgeries/procedures.

My worst pain is also upon sitting and it is just so frustrating and depressing. I don't know that mine has the intensity of yours, but when you struggle to ride in a car etc it limits your life so much. I do not work, and certainly could not manage out of home work. My sitting limit is about 20 - 30 mins, then I struggle to bear it.

What I really wanted to say though, is, has the suggestion been made that it is the vertebrae themselves hurting so much by having the ADR press in so hard when you sit?

The reason I suggest this is because, before my first fusion, I had complete degeneration of the disc at one level, and due to the vertebrae rubbing back and forth across one another, I had developed swelling in the vertabrae, known as Modic changes. This was extremely painful.

Additionally, when a bone is fractured, it is painful. Anyone who's had bone grafted from their hip for use in spinal fusion knows at times it can hurt worse than the fusion itself.

Bone hurts. Just my opinion but I'd be getting that thing out and going for a fusion if it ends up being deemed necessary.

Wishing you the best.

[james]

I haven't been able to sit since 2006. I gave up my PhD after 4 years because of that. I was able to stand up and work, but now I have burning sensation on my sole feet and cannot stand up more tan 5-6 minutes. I hurt my knees in physical therapy, which makes standing even more difficult.

I lay down on my bed or coach most of the day. I have started mild exercise since few months ago.

When I sit, the back of me legs start burning like hell.

[dshobbies]

Hi James and welcome to the forum,

We know nothing about your circumstances. Why don't you start a new thread and tell us about what's going on. Five years of no sitting sounds like too long to do nothing.

Dale

[Maria]

Neither could I for years. Some of those years prior to spine surgery some and some after 2nd spine surgery (after first one I could sit but level above that started giving me probs).

Are you taking any medications? Neurontin helped me greatly with burning pain in buttocks/legs/feet. Was on 1800mg/day for 12 years for neuropathies and mostly burning type of pain.

As mentioned please start a new thread and tell us about your self if you're so inclined.

[james]

I was diagnosed with annular disk tear and DDD at L4/L5 in 2006. I had mild back pain and buttock pain at that time, when sitting.

Doctor referred me to physical therapist and the bPT managed to destroy my back. After therapy, I was in bed for the next 6 months, because of pain. I did not have insurance and was not able to afford doctors at that time (thanks to the US medical system).

After recovery I was not able to sit even a minute. When I sit I have burning and tingling on the back side of my both legs, from my back to my knees. I gave up sitting and tried to do my daily work standing or laying down on my stomach (this was a bad decision).

Right now I have mild back pain and extreme burning sensation on my feet sole when standing or walking. I take medication, but they don't help other than making me sleepy.

I have seen many doctors. They say they don't see the symptoms on the MRI. I am having another MRI soon.

Dr. Howard Tung in San Diego, wanted to fuse my disc, which I refused. Because the disc is degenerated, my options are ADR or fusion, but I try to avoid it as much a I can. Honestly, I don't have much faith on doctors. They do what is good for them, rather than what is good for the patient.


I do back exercise to strengthen my back muscles, including Plank, Cat-Camel and Medex machine. They don't alleviate the pain, but I am hoping exercise prevents herniation of other discs and preventing the L4/L5 to become worse.


I have cut lots of details, because I am not in mood now.

[Maria]

James,
So you've not had any surgery to date? That much sounds good to me if it's virgin territory no matter what's going on there. That's just my own opinion after 2 discectomies and then being worse off not better (rebulging, scar tissue, setting spine up for further surgery).

Whether I would have been better or not w/more surgery as was proposed I don't really know and I decided to go with not more surgery but only because I was feeling better than when I was seeking more surgery.

Like you I wasn't too trusting of surgery or in my case more surgery since what I had done seemed to have backfired (felt like backfire too) overall.

Then again I do read about many persons who in the pursuit of a better spine surgically after failed surgeries and/or continued problems actually get that so it seems to me that there are successes and there are failures. Hopefully if you were going for a surgical option your case would yield success.

I had horrific burning pain bilaterally in buttocks and down both legs into feet after my 2nd discectomy for 5 years which really scared me with regard to recurrence and/or recovering from either ADR or fusion and/or both (hybrid).

Oddly enough.. that pain now 19 years post my 2nd surgery is gone. I no longer take medication for that type of pain (still take low dose pain med 1x/day). I don't know if it's because L5S1 finally after many years (like 30 post original injury) autofused with complete dessication of that disc.

All I know is I'm so grateful to be where I'm at currently pain wise vs. where I have been. And I sit quite a bit more than I used to which is still not to say alot or like a normal person who has no limitations on sitting. Just enough to be able to feel like a halfway normal person most of the time before I remember that sitting bothers me or can kind of lay me out if I don't get up and move around. Not the terrible pain that used to just drag me to the depths of despair or was down and out impossible...

Have you talked to Mark here? Perhaps he could be of help to you at least just to talk to...

[dshobbies]

James,

As for having surgery, only you can decide if and when. There's no going back and your spine will be forever altered no matter which procedure you decide on.

Having said that, I feel living your life in pain is a waste. You can't sit which means you can't do so many things that might be important in your life. I assume you are not living a decent life. But, perhaps that's good enough for you. We alll have different priorities in life.

Your pain is coming from nerve compression, probably your disc material pressing on your spine. Neurontin or Lyrica can help with that pain and though they play tricks with your brain, neither make you sleepy.

We're here to help, whether you decide on surgery or not. But reading between the lines - you're not in a mood for details - possibly tells of your discontent. There is help if you want it but it does come with risks.

Dale

[james]

Thank you for your replies.

I am 47, computer programmer. My bad back is because of sitting long hours behind computer. I have lost lots of job opportunities as well as my wife because of back pain, in the past years.

In my current job, I have some freedom. I can lay down in my office, behind close door, or sometimes work from home, while I am in bed. My employer does not know much about this. I pretend I am okay.

I am very limited and haven't been further than 5 miles vicinity of my home for the past few years. I drive short distances to work/grocery. It is very painful, but I have no other choice. If I need to see a doctor, I hire someone to drive me.

I have difficult sleeping at night, because all sleeping positions are painful. I put pillows around myself and sleep in 45 degree position; between sleeping on my side and sleeping on my back.

Sleeping and sitting problems aside, my biggest problem is burning sensation in the bottom of my feet.

[Maria]

James,
Yeah I would probably seek further consults at this time because of not just how limited you are by your spine - back pain but also the burning pain (annular tear related?).. but mostly because the rest of your body is going to "heck" in a handbasket while not physically active.

There are other diagnostic tests to have if one was pursuing the potential pain generator(s) creating whatever is going on.

Then again meds might help you enough to the point you'd tolerate being more functional.

I didn't go far from my home either when in worst pain chronically and when I did my husband had to "cart" me around in the back seat of his SUV while I would lie down. Things got better for me in 2001 after getting ESIs (epidural steroid injections) and starting pain meds.

My last job I was able to work somewhat as you are .. tho even that became too much.

Even if you get more opinions/diagnostics if surgery is proposed you aren't obligated to go thru with it tho there may be something out there that could help you. Have you seen a Pain Management doctor?

BTW I don't want anyone to get the impression that I am trying to steer anyone away from surgery only sharing what has been my own personal situation and worked for me (to date). ****** Also very sorry to have hijacked this thread.. this reply should be under your new thread James. My apologies to Jamie!

[zfontana]

[quote=fuzzy;11787]When you walk you don't hurt so the disks are not causing pain.

There are cases where then motion of the ADRs are exactly the thing you don't want and that may be part of the failure rate with ADR surgery.

Putting the DSS in is supposed to limit or stop the articulation of the ADR so that when you sit the ADR at S1 does not get articulated which may be where your sitting pain is coming from. It articulates more then your natural disc and that may be why you have more pain now then before surgery. Based on what I saw on my own rays it is surprising how much motion the ADRs allow and I am glad in a way that I got fused at S1. Dr. B might think that limiting motion of the ADR is the best strategy as the ADR itself is not causing pain as you have shown by being able to walk!! Another Dr. might think to play it safe and stop all the ADRs from moving to much...
I personally agree with doing the level that hurts, not more.

I don't have your answer for you but I feel you should not take out the ADR if it is not causing pain but find out exacly what causes the sitting pain which may just be the excessive articuation of the S1 ADR. A good bet is the DSS. If you still hurt after that surgery, don't give up, there is an answer. but you have a good chance of much less pain.

I am not a doctor, just a patient who works a life of advanced troubleshooting.

Don't take out the ADRs..