3 Year ADR Update

[Jim M2]

The 3 year anniversary was Aug 22 but with MGH down I didn't have anywhere to post an update. So here ya go...

Surgery Date: Aug 22, 2003
Charite L5S1/Zeegers
At time of surgery
49 yo, male, BMI 22, no smoke, otherwise healthy

At 3 years post-op
Bilateral pain at the L5S1 level. There is a sharp soreness pain that is motion dependant. There's a mostly persistent component of pain that I describe as being hyperextended to the point of great discomfort or pain. Putting the lumbar spine in flexion helps reduce the discomfort. As a result I sleep curled up in a ball. There's a deep ache that comes from the L5S1 area that I attribute to the facets, although I can't say for sure. Finally I noticed this, if I get out of my rather small allowable activity envelope it feels like I've sprained something. Typically this marks the beginning of a flare-up that can last a day or over a week. I'm not always sure what brings this on. If you've ever wretched the bejeebers out of your ankle to the point where it swells up like a softball you know the feeling.

After 3 years of being undecided about the success of the surgery, I've decided it wasn't the best choice. Of course I'll never know how the other courses of action might have turned out. Those would have been to live with pain until I auto-fused or to have a surgical fusion.

Jim

[grima6]

Hi Jim
My Name is Lorna, I am an Aussue mum of 4 who is now 20mths post L5-S1 disc replacement. I have the same sort of pain as you by the sound of it! Burning pain at the disc site leval that extends bilaterally down both legs to my toes. One day the right leg is the worst the next it may be the left leg. I know my pain is related to motion but have no idea which one!! Lifting over about 5kgs is an automatic week pain increase as is sex but hey, you gotta live! I am 34 yrs old and first injured myself in 2004 so I, like you feel too young for this pain stuff. I have always wondered if a fusion would have been the better option but was told the disc was #$%& so ADR was only choice. In research I have done post-op it seems that sooooooo many post ADR pts (especially with lower lumber discs) havehuge ongoing nerve and pain issues. I am having a Neurostimulator implanted next week which will apparantly change the pain to a tingling instead, heres hoping anyway!! I hope you feel less alone knowing that I know EXACTLY what your pain feels like! People who have not felt it would have no idea, it interrupts your thought processes and your whole functioning not to mention the depression that inevitably comes with it. Keep your chin up and my magic INSTANT PAIN RELIEF IS HOT WATER BOTTLES UNDER DISC SITE AND LEGS RAISED ON PILLOWS WITH HOT PACKS UNDER THE WHOLE LEG IT IS INSTANT HEAVEN UNTIL THEY COOL DOWN! mIGHT WORK FOR YOU? i HAVE RESEARCHED HAVING THE DISC REMOVED AND A FUSION DONE BUT IT WILL ONLY CAUSE MORE NERVE PAIN AND AS L5-S1 IS AT THE JUNCTION OF MAJOR VESSELS, IT IS LIFE-THREATENING SURGERY SO REALLY LOOK INTO IT. i SLEEP ON MY RIGHT SIDE WITH A PILLOW BETWEEN MY KNEES AND HOT PACKS HELD AT THE DISC SITE BY TRUSTY UNDIES!! VALIUM IS ALSO GOOD FOR SLEEP AND AS IT IS A MUSCLE RELAXANT IT TENDSTO STOP NOCTURNAL SPASAMING OF THE BACK( BUT IS NOT AN EVERY NIGHT THING ONLY "A CAN'T STAND IT ANY MORE NIGHT THING"). tAKE cARE MATE, THINKING OF YOU! lORNA

[mmglobal]

I have a client who had 2-level Dynesys implanted behind 2-level Charite on Thursday. He had the 'tilting vertebrae' that we sometimes see. We have no idea what the long-term outcome will be, but if the Dynesys corrects the tilt, as it did in Carmont's case, he should look forward to a good outcome. He has some surgery induced thigh numbness, but that is not unexpected and seems minor. Hopefully, it will fade in days or weeks. Upon waking from the surgery, the numbness and pain in his feet and lower legs was gone. Again, too early to draw any conclusions. As he resumes more normal activites, we'll see. I'll report significant events as I learn them... or maybe he'll come and post.

Mark

[Michelle]

I'm 3 weeks post-op L4-5 ProDisc. Now you guys are worrying me. When did your pain worsen, or did it just never go away post-surg?? I feel great, aside from minor leg pain that seems to be getting better, and an ache in my spine that varies with activity. It also seems to be improving. I'm just hoping it never comes back!!

[dshobbies]

Michelle,

Everyone is different and though we look for someone who has similar problems, you shouldn't look for them before they hatch. If your leg pain is getting better and as long as you take it slow, you have every reason to believe all will be well.

If and when... etc., don't waste your energies worrying about something that may never be a problem.

I wish you continued luck with your recovery.

Dale

[knbosse]

Hi
I'm new here.Is there anyone getting ready for spine surgery in germany 3 levels

[Jim M2]

Lorna,
Yes, your pain sounds similar. Thanks for letting me know your story. I have the radicular pain but it's intermittent and not too bad. There are two main components of pain that really slow me down. One is the sharp bilateral LBP. The other is just plain old LBP. There are several other less-than-rosie ADR patients from other forums who I hope eventually fine ispine so that we can share our findings.

Mark,
I'm always amazed by the good outcomes of dynesys. CQ seems to be doing well. I just don't get how it would work unless it virtually eliminated motion (maybe it does?).

Michelle,
I agree with Dale - give it some more time before you worry. It sounds like you have a very good trend going. I recall some ADR surgeries on the forums with very rough and disappointing starts that turned out with excellent results after several months. This was not my experience. I had trouble from day one. I had surgery first thing in the morning. That night it seemed like something was not right. The old pain was gone, but a new high level pain was there. It was spread out a little more across the back and seemed closer to the skin. Looking back I think it was my facets screaming.

knbosse,
I think you should start your own thread to ask your question. Where specifically are you going in Germany? Good luck to you!

Jim

[Blairsara]

Jim and Lorna,
I think i might have the same problem (if your pain is generated from the facet joints). I am 2.5 years after Charite ADR and have been basically in constant pain since ... 2001? As soon as I recovered from my surgery this new pain hit me and hasnt gone away.
I'm glad I found you. It's nice to know that you're not alone in these situations. Jim, did you have facet deterioration before your ADR? I know it's been a while since you guys posted on this thread, but I hope you guys read this.

Blair

[Maria]

Hi Jim,
One thing for sure, walking in a mall trying to Christmas shop nearly brings me to my knees after a period of extensive walking.. there's a pain right up my tailbone and what I think is piraformis pain still (bilat) but it's the low back pain across L4 that will totally drop me. I try to avoid getting there tho just do at times.

What surgery would be right for me? Currently hybrid fusion at L5S1 and ADR at L4 is the recommendation for me. I worry that L5S1 fusion will further aggravate what has happened in the past, I worry that both fusion and ADR might make me more mobile and thus bugger the L3 that is disrupted w/anular tear but not *gone* yet per multiple discograms..

One can never know would be, only what is or has been. So thus we make our choices. I hope that with time your pain will resolve and/or there will be a procedure out there for you that will take care of things ~

We are a work in progress no doubt! Take good care and look forward to seeing you again one day at a Spiney Reunion! BTW, obviously I worry too much!

[Jim M2]

Blair,
I had the same experience! The evening of the surgery I had a new pain. It was the most significant pain, far beyond the surgical pain. It was L5S1 bilateral and felt more posterior relative to the presurgery discogenic LBP.

I did have facet issues prior to surgery. They were misaligned and one had a small cyst or fluid build up. Post surgery imaging shows the facets to be properly aligned and no evidence of cyst/fluid. I didn't like walking before or after surgery. When I stood or shuffled around using small steps I had the discogenic pain. When I tried to walk at a normal gait there was some other pain source that acted up. I now think the presurgery discomfort and pain that arose from walking was an indicator of worn facets.

On another forum Dan (djscal) described his pain at 1 year, and it sounded very similar to mine.

One thing is for sure, the old discogenic pain is history. I can stoop, bend and lift without discogenic-type pain. If I didn't have facet issues I'm sure I'd be pain free.

Maria,
I understand and appreciate what you say about the choices and risks, it's quite a dilemna. Wojt's (from MGH) always pointed out that in the end it's a gamble.

I'm looking forward to seeing everyone again at an MGH party. It involves a plane ride from Seattle to OC but I'll do it!

Jim

[Blairsara]

Jim,
I definitely agree with you on that if I didn't have this problems with my facets then I would be pain free. All I can do now is do everything possible that is available to make it so I am not in a lot of pain. I'm going in for a Rhizotomy in less than 10 hours. I hope that it works. I don't think this pain is worse than my previous pain because I couldnt do anything, now I can do things but I'm limited to a certain extent. And the pain is also very very different from the pain I felt before the surgery.
Have you had facet blocks or a rhizotomy? I know that our here (Los Angeles) my doctors are going to come up with a less invasive procedure other than a fusion to fix the problem but it wont be for at least 3-4 years. I don't want to have the fusion because I guess the surgery is very dangerous after having ADR.
What do you do to try and decrease your pain? I'm sorry that you have this pain too. It sucks, it's frustrating, it's constant, etc... but you still have to keep your head up and never give up on hope that one day you will be pain free.

Blair

[djscal]

Originally Posted by Jim M2

Blair,

I did have facet issues prior to surgery. They were misaligned and one had a small cyst or fluid build up. Post surgery imaging shows the facets to be properly aligned and no evidence of cyst/fluid. I didn't like walking before or after surgery. When I stood or shuffled around using small steps I had the discogenic pain. When I tried to walk at a normal gait there was some other pain source that acted up. I now think the presurgery discomfort and pain that arose from walking was an indicator of worn facets.

On another forum Dan (djscal) described his pain at 1 year, and it sounded very similar to mine.

One thing is for sure, the old discogenic pain is history. I can stoop, bend and lift without discogenic-type pain. If I didn't have facet issues I'm sure I'd be pain free.

Jim

Hey Jim,

Yes, our pain is almost identical. I also have trouble with walking slowly and taking small steps and standing still. Sitting is also bad, especially if the chair is very low. My pain is also bilateral - just off to the side of the center. The discogenic pain is gone in my case as well, however my facets hurt like hell. I also have to sleep curled in a ball on my side. I had to tell my girlfriend not to take it personally.

I also had or have a cyst on my l5-s1 facet joint that was missed by my doctors. I just had a CT Scan to determine if it is still there. I believe it is because I have a bit of foot numbness which I believe is the cyst making contact with the S1 nerve root.

Did you know that you had the cyst before surgery? Did your doctor not think that to be a contraindication to ADR? Have you tried having a rhizotomy? It helped me a little bit.

Kind Regards,
Dan

[Jim M2]

Everyone knew about the cyst. It was obvious (to them) on the imaging and it was in all of the reports.

I always felt like a rhizo would mask the pain and allow me to abuse the joint even more. When the rhizo wore off I'd feel worse than before. I'm starting to think this may not necessarily be the best strategy. I just wonder what the endgame is for a worn facet. If I didn't have ADR the whole level would eventually fuse, and with any luck, pain would fade away after years. Now with the motion enabled from the ADR what's the endgame? Maybe the facets will hypertrophy, and spurs, cysts and pain will develop until the facets become immobile?

[annapurna]

Jim,

About what happens to degenerated facets behind an ADR, I don't think that anyone really knows. I asked Dr. Fenk-Mayer this a couple years ago and she said that the fate of arthritic facet behind and ADR is one of the great mysteries of spinal medicine.

If you think about it, though, you could really only get two outcomes: better or worse. In the first case, the normalized loading and motion permits some sort of joint healing the pain eventually subsides. This is known to occurr in patellofemoral joints in the knee following patella alignment surgery. In the other case, the arthritis progresses as you described and you get spurring that leads to stenosis. At that point, pain from the facet joints would probably take backseat to the nerves being pinched by the bone spurs.

At that point, you could choose a wide decompressive laminectomty with fusion or with a motion preserving device such as TFAS, AFRS, TOPS, or one of the many follow-on devices that will no doubt be in use by the time we have to worry about stenosis.

Best of luck to you and Blair and all of us facet-spineys. May the new year bring hope for better spine health to us all.

Laura

[Jim M2]

Laura,
Thanks for the excellent info. Looks like all I can do is hang on to see what unfolds, better or worse.

For now I'm getting used to limitations. I continue to manage myself better to keep control of discomfort and pain. I'm still improving at an excrutiatingly slow rate, and I think I'm just plain getting used to dealing with it.

If I ever decide to have a surgery it will be for pain. I can deal with limitations. At some point pain controls me.

Jim

[Blairsara]

Jim
Getting used to being in chronic pain is very difficult, but what has worked for me is to try and focus on anything that will take your mind away from your body. For me, the past few months was law school and throwing myself at work. What about taking up a hobby tht doesnt make your pain worse?
I hope you have a great new year!!!

[djscal]

Jim, Blair, Laura,

Yesterday, I had Dr. Fuller (a local pain mngmnt doc) try to aspirate the cyst on my right side L5-S1 facet joint. He tried 3 different entry points but could not get the needle into it.

I'm hurting from all of the poking around and frustrated. Fusion is sounding better and better. I will give it until the summer I suppose.

The question becomes if I fuse. Do I go for a 360 degree? I'd be scared to only fuse the back for fear that there would be enough motion in the front to cause problems. Also posterior fusions can have issues like screws loosening and not enough bone growth in between the vertebra. If I remove the Charite and fuse from the front there may be enough motion in the rear to cause me facet pain.

My head hurts!

[Blairsara]

David,
I'm sorry to hear that Dr. Fuller wasnt able to aspirate the cyst. I have been going to Dr. Fuller for all of my facet blocks and my last rhizotomy. He's absolutely wonderful and definitely one of the best of what he does in LA.
I don't really know the different kinds of fusions, I actually didnt know there were different kinds. What did Dr. Fuller say about the fusion and your other doc (I think Regan right?)?
I hope that whatever you decide to do it helps! Happy new year!!!!!!!!!!

[annapurna]

Dave,

Sorry to hear about your painful facet(s) at L5/S1. Perhaps your pain management doc could perform a rhizo and, at the same time, give the cyst aspiration another try?

As far as fusion goes, it's really an individual choice. Here's the breakdown of post-ADR facet options that as I know it.

*Fusion: ADR revisions to fusion, with or without ADR removal are complex surgeries. As far as I know, there is still some controversy concerning continued painful micro-motion with a posterior-only fusion. Removal of the ADR is definitely a "big deal" surgery, although experienced surgeons have done it successfully. Needless to say, you lose the motion at that level with all the issues that may or may not be associated.

*Posterior Stabilizaiton: Posterior stabilization devices address facet pain by "sharing" the axial load with the facet joints and preventing improper motion. Yes, the painful facets remain in place, but, with the posterior stabilization device taking a good deal of the load, the facets can calm down and quit hurting. Surgical approaches are far less invasive than a fusion revision or facet arthroplasty.

*Facet arthroplasty: These devices work by simply replacing the facets and/or the entire posterior spinal element with a mechanical device that does the same job. These devices are VERY new with little or no clinical data, depending on the specific device. At the same time, for someone with an ADR and symptomatic, end-stage facet arthritis, these devices represent the only alternative to fusion. Surgical approach would be similar to posterior-only fusion or laminectomy.

*Rhizotomy: Works by simply cutting the nerve signals that feed the facet joints themselves. Facet rhizotomy can be very effective for reducing pain from the facet joints. The technique is percutaneous (just a needle), and, therefore, represents the most minimally-invasive of all the possible procedures. Despite the fact that rhizo is only a pain management technique, it can indirectly provide real, structural benefits in that it permits better physio and muscle strengthening which can, in and of itself reduce the very instability that may have been causing the facets to be painful.

Personally, I'm not in a hurry to do anything more than rhizo, even though I have fairly advanced facet arthritis behind my ADR at L5/S1 and at the non-ADR level above at L4/L5. Although I'm a huge fan of joint replacement technology, I'm simply not comfortable with the idea of using devices that have so little clinic data. I'm not happy with a fusion because, in addition to a revision of my ADR, it would mean losing motion at not one, but two levels. Even though I'm no longer young (39-years old), I'm not yet willing to accept the activity restrictions a two-level fusion would require.

Hope this helps and bear in mind that I'm certainly no expert - just another patient looking for information.

Best,
Laura

[Jim M2]

Dan (djscal), Blair, Laura, Dave,

I'm with Laura on waiting. At the 2004 GPN seminar Dr. Yeung reminded us that there wasn't always back surgery and people usually get better. Now with the ADR I'll not fuse naturally so we're a different group. There will always be the motion that hurts the facets. Still at almost 3.5 years post op I continue to improve although at a snail's pace. I'm voluntarily limited in what I can do to keep from flare ups. I feel lousy but I don't have the 24/7 oppressive, distracting, horrible pain that was with me for so long.

Laura, thanks for the concise list of options!

Jim