3 level ADR to Autofusion

[dzydvl]

Good Morning Everyone,

I'm new to the forum, but after my Dr Appointment yesterday I will be hanging around a lot more.

So where do I start, I guess the beginning would be as good a place as any.

This all started 2-14-1997, I was 20 working at McDonalds. I was unloading a truck carrying 2 cases of bag in the box soda. Unfortunately someone had spilled some water on the stairs, and failed to clean it up, and I stepped in it. The liquid all shifted, which caused me to ultimately twist and fall and in the process I injured L3-4, L4-5, L5-S1. Fast forward to December 23rd, 2004, after multiple failed treatments, and special approval from the FDA, I had a 3 level disc replacement at Texas Back Institute, my surgeon was Dr Zack E Ziegler. Surgery was uneventful, it took a little under 4 hours, and honestly I felt great, but I’m sad to say that didn’t last as long as I had hoped.
I started having issues in 2008, but it wasn’t the same type of pain, it turns out the generation of disc that I have can cause “Too much” motion (which will really confuse you and me in the next paragraph). As a result my new pain is being caused by the facet joints. (This is common knowledge now, but back when I had the surgery, not so much)

So in terms of treatment we went with facet injections, and eventually RFA, which seemed to help, so once again I was happy and chugging along.
Over time the pain slowly started creeping back in, which I wasn’t too surprised about, since we know over time nerves will heal themselves, and the process of RFA will have to be done again, which isn’t too bad. Unfortunately a new symptom was also developing. This really strange click in my lower back, it wasn’t painful all the time, but it wasn’t right. I saw a DR in WI, and they didn’t see much, so we kept on the same course of treatment, and had the RFA, but this time it did nothing. No relief, not even a little. I ended up back on the pain meds and back into depression. I had really hoped I wouldn’t be in this position again, but I was.

During this time, I ended up getting a new job, which transferred me from WI to TX, so I decided to make an apt with Dr Ziegler, maybe he would have some ideas. I showed up for my appt. and we did the typical set of x-rays, but what we saw still has me confused beyond belief. It seems as though my spine decided to take its own path, and the surgery that was meant to preserve my ROM may have caused the opposite. As of this point it appears that only L3-4 is fused, but the levels below are now out of alignment and most likely causing my pain. The sad thing we don’t know what we are going to do. The plan right now is to try facet injections at a higher level and see if that might help, but I’m not sure if I have much hope. My fear is, if these things are already fusing themselves are we better off fusing the levels below them, to make sure they are fused and aligned?

Now that I’m back and researching it seems other people are having similar issues, but as far as treatment there doesn’t seem to be a standard course of treatment.
I’m hoping some people here may have some experience with something similar and have some ideas. I’m open to ideas so feel free to give me your thoughts. I’m sorry for the wall of text, but I appreciate you taking the time to read by story.

[Jim M2]

Hi dzydvl,

Sorry to hear you are having so much trouble. There are some similarities in our situations.

I had a Charite disc implanted in 2003. The evening of the surgery the facets were screaming. RF treatments gave little relief. The Charite was replaced with a fusion cage earlier this year. Now at five months post-op my post surgery pain is similar to my pre-surgery pain although the pain level has come down slightly and it seems I am very slowly improving. I started back to work part-time this week. I am optimistic I will continue to improve slowly as the two vertabras(sp) fuse.

Maybe do a facet block at L3-4 to confirm that level has calmed down. Then do facet blocks one at a time at each level to get an idea of which levels are the most hosed.

I feel for you. I've had problems with only L5S1 and it has made my life miserable since 2003. Good luck and keep us informed.

[dzydvl]

Jim,

Thanks for the reply... I guess what I hate the most is knowing the treatment I chose that was suppose to be the better alternative to fusion has become a fusion. What stings even more is the financial issues the original surgery ultimately caused (was originally approved by insurance only to be denied AFTER, needless to say the financial turmoil still affects my family today)

Add to it the uncertanty and I feel like I'm stuck in an emotional taffy pull machine.

[Maria]

First off sorry to read that you've had ongoing problems and once again are facing a decision that really probably doesn't even have a definitive answer. By this I mean surgeons can probably tell you what might happen though I'm not sure what might happen will happen and even if it does may or may not impact you as one thinks it will.

I am wondering what the surgeon you saw thinks with regard to the autofusion and/or has advised you with regard to this option or more surgery (fusion)?

I've had 2 discectomies at L4 and L5S1 and was a candidate for a 3 level global fusion, then a two level ADR, the ADR and fusion.. didn't do any of the surgeries because after numerous years of pain post 2nd discectomy it seemed I was starting to feel somewhat better with what at that time was probably related to good response to ESIs, Methadone and Neurontin or at least about 5 years going into all that. I didn't want to be dragged back into the "unknown" re more surgery and response.

Even though my L5S1 area is pretty much autofused L4 is still problematic enough to bug me. I'm not sure what L3 is doing as that had an annular tear for the longest time and it's been so long since I had an MRI (2006) I don't really know what all is happening back there though I know not enough to warrant an updated MRI per WC (work comp).

I'm hoping my L4 will autofuse too and I'm hoping I can get away without anymore spine surgery though I don't know about that so I guess it's sort of always a "maybe" out there for me.

What I'm wondering is would it be possible for you to take pain medication and do nothing else surgically? I did that for the last 14 years. Am just now starting to taper on Methadone which I have to say was a very good drug for me re pain. I'm not sure I'll get off it entirely however that was at least what I have been attempting to do though honestly it did provide me with quite adequate pain relief and also I was dealing with "the devil I knew" vs the devil I didn't re more surgery.

Just food for thought. I mean surgically fusing two levels may help some things and may create some other problems so it's hard to weigh it against the body just auto fusing those levels (the unknown response either way though I tend to put more faith in the body's ability to heal itself than rods, screws and such). I know we all want the Holy Grail when it comes to spine surgery and I'm sure plenty of us get it.. and then plenty don't. I also understand if one might absolutely need surgery to prevent something from worsening.. though I do tend to think what might help one spinal problem might create another surgically so I've held back thus far from thinking along surgical lines myself. I'm sure I have enough going on that something would still be recommended for me like multi level fusion (my low back was so out the last few days ..just outrageously painful to move let alone do anything). And then there are the people I know that have had successful recent spine surgeries or surgeries that actually helped them so it always comes down to each individual weighing his or her own situation and rolling the dice I guess. You know well enough about this given your own spine surgery experience.

Good luck with whatever you'll be doing and please continue to update us~ whatever route you choose to take ~ Maria

[Jim M2]

dzydvl,

After some more thought I would thoroughly investigate the situation. What I mean is that I would get as much imaging as possible. I would try a number of interventional pain management procedures in hopes that these might help shed some light on possible pain generators. I would take all of these results to multiple surgeons for opinions. If you found a smoking gun(s) I would certainly consider converting the ADRs to fusion from the front. You need an outstanding vascular surgeon and a spine surgeon to pull this off. The goal is to get proper alignment of the spine. Your spine seems to be unstable. When they go in from only the front a lot of risk associated with spinal cord, nerve roots, tendons and muscle, etc is avoided. This might be bad thinking but I'm afraid you might have pain for many years in your situation.

On the topic of insurance (those sleaze balls) I would start an appeal. Cc your state insurance commissioner on the appeal and all correspondents with the insurance company. Start legal action. It is thievery on their behalf. That's why you have insurance is for these situations. Sorry I am rambling. I don't know how doable these actions are. I hope some of the forum participants can contribute some helpful information. The behavior of the insurance is sickening.

[jsewell]

Hi my spine is really messed up . I just posted about my upcoming surgery in hopes of getting some type of alignment back. My original surgery said there was nothing else that could be done. so after 2 years of more and more hunched over position. I looked for a surgeon who does deformity surgery. I found one . My spine is now in the shape of a C, the lumbar area curving in the wrong direction . I would get lots of opinions. I am going to be financially in bad , bad shape after this surgery. I had to go on Obamacare and not many docs in Ca accept it. I figure from this first surgery I will be paying 7 doctors and I am only sure one of them takes my insurance. If you can fight the decision that is great, but is there a statute of limitations on this? Anyway good luck on getting any pain relief
Judy

[dzydvl]

Hello fellow spineys... Well as expected things got worse, this past weekend I lost feeling in my left leg and ankle, and foot drop set in. I did the usual things one would try when you get a flair up, ice, NSAIDS, and rest. Went to the dr Monday, and they ordered an MRI, and a Doppler ultrasound to rule out DVT. Went to the clinic for the MRI, and they did the test scan and immediately pulled me out due to the fact they couldn't see a thing due to artifacting around the Pro-Discs. I was quite surprised to see a clinic that decided it was better to not to do the procedure if it wasn't going to be useful.

Fast forward to today, when my pain Dr immediately sent me to a surgeon. He looked at the X-rays from a couple months back, as well as some past MRI reports, and decided to order a Mylagram. His immediate diagnosis after the usual neuro tests is minimum of a 2 level fusion (L3-l4, L4-l5), but he also said it may be best just to fuse all three levels, to prevent the bottom disc from causing issues.

To make things worse, thanks to my initial ADR surgery, I have an Abdomin full of mesh, so entering through the front is not gonna happen, unless we have an abdominal reconstruction specialist in the room to clean up the mess he's sure to come across.

Fortunately he has experience of dealing with revision surgery for ADR complications, and he immediately said we would not consider removing the discs unless he sees something when he's in there, even then he's not too keen on the idea.

Any who, that's where I'm at today.... Now the long wait until the dreaded mylagram, and the fun that goes with that.

Any and all thoughts are welcome..
Here's to a pain free weekend everyone...

[Maria]

Wow u sure have been having a lot going on! I think there have been some very successful revisions done that I've read about on this forum and some others over the years. It's good that your surgeon has experience with revisions and doesn't have to refer you out even though you may want a second opinion because of the nature of the proposed surgery (revision). I think that's just the norm whenever a surgery of this magnitude is proposed. That being said you may be entirely comfortable with your current surgical choice and confident in his abilities however it never hurts to get one more opinion!

I don't know if you've gone back through some of the older surgical forum material here though I'm sure there are people that have talked about their experience having to go from ADR to fusion in revision surgeries. If not and even if so you may want to talk with Mark Mintzer (mmglobal) about the proposed surgery (or maybe you've already done this). He would likely be the one person here besides those that have had revisions that could give you the most information.

Anyway I guess you'll be having the myelogram soon ( I hated these because I always got spinal leaks afterwards) and then getting your surgical date pending the results?

Please do keep us posted and while I'm sorry to read that you have to undergo more surgery hopefully the surgery will help your current spinal situation out!

Wishing you the best! Maria

[dzydvl]

Hello Maria

Thanks for taking the time to reply, it's appreciated. There was lots of information in your post, so I want to make sure to address it all.

In terms of the surgeon and the proposed surgery - I completely agree with you here. My plan is to have the myelogram done (Thursday 12th), and get my follow up results on Monday the 16th. That way we know what we are dealing with. Once I have those results, I'm going to go back to TBI and talk to Dr Ziegler and his staff and see if they agree with the results. I'm also looking into one other surgeon that a fellow coworker recommended. I figure three opinions is a good start. If two agree great, but most likely they will all have different opinions, which may not be so bad.

As for reading through the past information, I started to this past weekend, but I will continue my research, I like you agree you can never do too much.

You mentioned the name Mark M, I recognize that name from a forum I used to visit, but it's no longer around, but I will have to look him up. Again, it goes back to that research and you can never do too much.

Oops I forgot one thing, the dreaded myelogram, yeah I'm not looking forward to it. Like you the last time I had one, I had a leak and had to have a blood patch done to get rid of the spinal headache. I'm hoping I don't have to do that again, but I know my luck so I'm already planning for it

I hope I covered it all, but feel free to let me know if I missed anything, I will be happy to respond.

[Maria]

iSpine is his creation! You can address questions to him here specifically in a separate thread and hopefully he will answer or you might want to use the Contact Us up under the disc photos next to iSpine The International Spine Patient's Information Network. You could probably call him and leave a message.

Sounds like you're doing good with all your "moves" thus far! I too would seek more than one other surgical opinion and like the idea of 3 myself.

re the spinal leak I don't know why my doctors never wanted to do one on me so instead I had to be admitted to the hospital and lay on my back flat for a week getting IVs and using the bedpan, eating turned to my side with my head flat... sheesh it was really awful until about the 6th day .. so 2 times I had to do this post myelogram. I had a really bad spinal leak after a spinal tap when I was in my teens as well.

So hoping that you will do Ok with that procedure and if you do have the leak will get the patch and it will work for you and all will go easily enough with all of that part of things!

Take care and please keep us posted! Maria

[dzydvl]

Hey Gang.... I hope everyone is doing well. So isn't it amazing how no matter what we seem to do it's always like we take a step forward just to fall back a mile. I ended up having to stay home from work today, due to the pain. I'm on a pretty high level of medication as it is, so upping it isn't an option, but I was hoping I may have a plan of sorts in the works after my test. Well I get a call from my manager, asking how things were, so I filled him in. Well he brings up a comment, have you looked into FMLA if I have to have the surgery. Well it's my fault but I hadn't, again this is all pretty recent, come to find out I'm ineligible for FMLA, and since I haven't been there 2 years I will only get 60% of my pay. Well being the only person in my family with a job, my boys are both in school and my wife is in school, I'm pretty much screwed. So my only option will be to suffer until I hit the point I'm eligible which is 6 months. Just hope the nerve damage by then isn't too drastic, and that it will eventually heal.

I guess what bugs me most is all I heard before starting there is how understanding they are, and how all these people have had to take extended time off for various procedures. In my case I can work remotely, but we have a VP who doesn't believe in it, so we don't get that option.

Sorry for complaining, I just really feel discouraged today. Thanks for listening, it's appreciated....

[Maria]

In the past I didn't let my work environment know what was going on if possible (which it wasn't always obviously when missing large amounts of time off of work due to back stuff) though I would go out on temporary disability as anyone should able to do that at least if you are in the USA. Also I would take the max amount of leave time for my surgeries not the minimum that I "might" be better by so usually I took 8 weeks off and then on my second surgery had to go with an extension at the end of that for another month.

I'm pretty sure you cannot be refused the temporary disability part and Family Medical Leave should be saved for someone else's illness in the family or a death or something like that I think. I never took Family Medical leave for any of my own stuff (2 back surgeries and 2 right knee surgeries) only for when my Mom passed away and I had to be away from work for a month. If you do it thru your employer they pay the time off but if you pay into SS then you can get temporary disability leave after I think 7 unpaid days off or something like that.

Don't say anything else to your work just check out what you can do legally and I do believe your doctor can order you to be off work almost immediately and you can go on a temporary disability or you can give a notice about how many weeks you're going to be out. Do not feel you are screwed and have to wait. Please check out your options but without letting your employer know your exact plans. You have to think of #1 and your family if you're the bread winner so please do that.

[dzydvl]

Hey gang,

Well thank goodness for an IPad, lol... Well the good news, so far no spinal headache, the bad news won't know anything until Monday. As far as the test, yeah it still sucks, but the pain was manageable which is good. I figure at some point I'll throw the disc in the computer and see if I notice anything. It's always fun to try and read the disc and see if you see anything remotely close to the actual results..... Anyway thanks for the words of encouragement they are appreciated.

[Maria]

Hopefully u will continue to do well and not develop a spinal h/a! Thanks for letting us know how you're doing and hope u continue to feel as well & better!