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.

[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]

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 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.

[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.

[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.

[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..