Scheduled for C5/6 ADR with a Prodisc-C--questions about that type of implant
 

Hi there! I'm excited to have found this forum. I suppose this is probably the spot to put my long-winded intro. I've had chronic neck/shoulder issues since a significant roll-over car accident in 2011--did plenty of PT, etc, no real help there. Spring 2015 I started having severe muscle spasms, and by May 2015, I got that horrible tell-tale pain down in my right forearm, along with numbness/tingling in my thumb, index, and part of my middle finger.

After months and months of running around between orthopedic doctors and physical therapists, I finally forced the medical director to authorize an MRI, and low and behold! Disc problems. Here's my MRI summary, in case anyone's curious:

C4-5: Mild posterior osseous ridging which is eccentric to the left. Mild left-sided canal narrowing. No cord compression. Neural foramina patent.

C5-6: Disc-osteophyte complex with element of left paracentral disc protrusion. Moderate canal stenosis. Mild left ventral cord contouring without cord compression or cord edema. No significant foraminal stenosis.

C6-7: Shallow central disc protrusion without significant canal stenosis or cord compression. Neural foramina patent.

I got referred to a pain specialist, and after months of waiting, got in to see a neurosurgeon as well. The pain specialist I saw first wanted to try some cortisone injections in C6-7, just based on reading the MRI report. I was going to do that, but I lucked out and got in to see a neurosurgeon early before that appointment. The Neurosurgeon looked at my actual MRI films, and thinks my issues are mostly from the C5-6 level, and said that he thinks I should have an ADR surgery to fix that issue. Especially because of the bone spur at that level, he said there’s little chance that disc will ever stop being a problem on its own, and I’m young (32 year old female). Seemed reasonable to me, since I’ve been ready to just cut my own arm off.

He also said that a disc replacement would decrease the chance of speeding degeneration at other levels, so long as insurance will pay for it. I am still a little concerned that the disc below it, C6-7 is already bulging—he obviously didn’t think it should be dealt with surgically yet, but I’m still worried about it, since the pain specialist actually thought that disc was the problem. That’s making me nervous.

After having my pain disregarded for so many months, I was taken by surprise when the neurosurgeon suggested ADR, and I knew absolutely nothing about that surgery. I was unprepared to ask questions. I called back later and asked what type of disc they were going to use, and the staff told me it would be a Prodisc-C. I wanted to ask more questions directly, but unfortunately they would not let me speak to the surgeon over the phone. I scheduled an appointment to speak with him in person, but they're so booked up, that appointment is only three days before the surgery itself!

In the meantime, I'm concerned about the type of disc he's using. As I understand it, the Mobi-C is the only disc that's approved for use at two levels. My concern is that although it's not surgical now, I already have a disc that's herniating beneath the one that they're replacing. I'm concerned that in the future I'll need that one done as well, so I'm worried about having that older Prodisc in there.

I work in academia, and I spend a bunch of time combing through journal articles--so naturally I spent some time reading through the literature on various types of ADR models. The issue seems to be that most of the studies are comparing different types to traditional ACDF surgeries, not to each other, so there's not a lot of robust research to really say oh, well, Mobi-c is definitely better than the Prodisc-c etc. I found a few that compared them, but they were in a lab setting, not actually in human bodies. This is probably too much for one post, but here were some of the things I dug up:

Overall, across several studies I found, the Prodisc has good results over a 5-7 year period, with little risk of implant failures so long as it was placed properly. It may have a slightly higher risk of heterotrophic ossification, but most of the implants seem to have that same problem, and it's not totally clear if the Prodisc's design has anything to do with that higher risk. Furthermore, heterotrophic ossification didn't seem to cause adverse patient outcomes anyway--it's like the devices just slowly convert into a fused disc, as I understand it, and fusion in general also has high success rates.

In lab tests, it appears that the Prodisc does a better job of protecting against extreme forces/excess movement, because it has a more constrained design than the Mobi-C. However, the polyurethane core wears down and starts shedding plastic particles more quickly than the Mobic-C (not proven in a body, just in a lab setting).

The only thing I found about the Prodisc that was worrisome is that there is a potential risk of a vertebral body fracture, due to the way they cut the bone to insert the big keels. But, this risk should be mitigated by them implanting it correctly, and not putting it in people who are not good candidates (small vertebrae, significant osteoporosis, etc). This risk does increase if you have a fusion OR another Prodisc implanted in an adjacent vertebrae. Interestingly, there are studies of Prodiscs being used at multiple levels, so it IS a possibility (although not FDA approved). It just carries that added risk. And that added risk concerns me. It was unclear about if they could put a different type of disc in the second level, and what the consequences of that might be.

Sorry about that long, long introduction, but basically I'm hoping for some other perspectives on my issue, and about the Prodisc-C itself as a device. There's only one surgeon in my area that does the Mobi-C that's on my insurance, and for practical reasons, waiting until summer to sort out another long chain of referrals is going to be difficult for me. As it stands, I'm scheduled for the ADR with the Prodisc on February 29th, and that's the most trouble-free option, but I don't want to make a mistake letting someone put this thing in me!

Is there another forum I should put a more condensed issue of my question in? Thanks for your help!

Bad news, you've pretty much caught most of the concerns. One additional one that has come out over time is that the Prodisc can permit hypermobility and lead to facet damage.

Good news, to some extent the vertebral fracture potential can be reduced by confirming bone density ahead of time and working with a skilled surgeon. Doesn't make that concern go away but it does reduce it. The hypermobility concern can also be partially addressed with strength training (once you're recovered to the point where that's safe). Laura's had two Prodisc-C's and uses strength training and prolotherapy to address the hypermobility.

Overall, it's pretty difficult to evaluate one ADR against another. Partially because most of what we accept as their attributes is actually marketing hype and partially because there's been little head-to-head testing or evaluation. As you're in academia, you'll understand that studies are generally only done when the study author is likely to be funded to do it. My, frequently expressed, opinion is that the most significant factor leading to ADR success is the surgeon's skill, not the ADR. If you feel like you're being railroaded, especially in that you can't speak with the surgeon, that's probably a far better indication that you need to delay and get your worries addressed

Well said, AnnaPurna. :)

JinSong, no, this forum is fine and thanks for asking. Let me know if you need help with this:

http://adrsupport.org/forums/showthread.php?t=11053

I've got a signature saved--is it not showing up? Thanks for adding me to the forum!

Thanks for your input! Yes, that's exactly what I found, in that there's almost no literature comparing the different devices together in vivo, and I assumed that was probably likely due to funding issues. It also makes sense in that at this point, with insurance companies in the US still fighting against ADR, that the research efforts are mainly trying to prove that ADR is equal to or superior to ACDF (and cheaper--found some studies arguing that it's cheaper in the long run). Meanwhile, I'm like I don't care what's cheaper, I have to live with this thing in my neck!

The Prodisc is concerning me still, especially with the whole two-level issue. The communication problem, as you mentioned, is also disconcerting. I actually really liked my surgeon, and he has a good reputation, but it just seems like we have so few surgeons in this town that they're all extremely busy and hard to get ahold of.

I may post another question about this, but I was also wondering about clicking issues--I've read a few posts here and other places about the Mobi-C making very loud clicking noises, and I'm wondering how common that is. I've seen fewer complaints about that with the Prodisc.

Jin,

Thanks for adding your signature. :)

The clicking noises are usually (if not always) attributed to structural adjustments of soft tissue post-operatively. Not sure if that would include facet joints (Z joint) or not. But in regard to your question, I don't think I've ever read a post from a patient (since 2004) that decisively stated that the clicking was from a poorly placed ADR.

Yes, complications have occurred; I am only addressing one of your specific questions.

Well, in that case it's good that it's not attributed to any specific disc type!

As I'm waiting to see if I can push through more appointments for second opinions, I had sent my MRIs and history off to Barrows Brain and Spine Institute in Phoenix, Arizona (feel free to delete that info if giving out names of facilities is not okay) for a remote consult. I didn't know that such a thing existed, so that was a nice discovery. They won't discuss surgical options, but at least they can confirm that you're a surgical candidate. I'm waiting to hear back from them though, because they interpreted my MRI a bit differently--I think they may have just made a typo in the disc levels! In case anyone's curious, this was what they came back to me with:

After careful review of your films the MRI imaging demonstrates a moderate
left para-central C5-6 disc herniation with compression of the spinal cord and mild
compression of the outgoing left C6 nerve root. There is a smaller left para-central disc
herniation at C4-5 without spinal cord deformity or significant impact on the outgoing C5 nerve
root on the left side.

The recent onset of left arm symptoms may reflect a structural change at the level of the spinal
cord and nerves or could simply indicate that the left C6 nerve root is becoming less tolerant of
chronic compression.

You are certainly a surgical candidate given your progressive symptoms, spinal cord
compression, and lack of response to physical therapy.

I'm guessing they meant C6-7 instead of C4-5 because as far as I knew from my other appointments...all I have at C4-5 is a bone spur. I emailed them to confirm, but regardless, I think the lesson here is that MRIs can be interpreted in different ways by different professionals. In this second consult here they seem to be much more concerned about the spinal cord compression, which was not really noted strongly by the original MRI report. The first surgeon mentioned a potential for permanent myelopathy in the future, but didn't really stress what's already going on there now.

Hypermobility of ProDisc, but also I would say new COR on axis of spine not the same as well as lack of translation.

The hypermobility problem seems like it's a well-known issue, which definitely concerns me.

I'm still harassing neurosurgeons, but thus far the soonest consultation I can get from anyone that uses a different type of disc isn't until almost April, just for an initial appointment. Now I have to decide whether to go through with the Prodisc surgery in February, or throw the dice and wait to see if/when I can get in with a different surgeon. Not an easy choice!

I'm so excited, because after weeks of harassing various surgeons in the state, I managed to get in for a third opinion TOMORROW. I was so worried I was going to have to make a choice between doing surgery and waiting for several months for more info/options from another surgeon. Will update after that.

Don't be surprised if the new opinion is more or less diametrically opposite to the ones you have. It seems like the more opinions patients here get, the more different opposing views then end up with. All I can suggest is to really ask a lot about why the new surgeon suggests what he/she suggests so you can understand what they see as the driving forces in their recommendation.

Wow you were so right--well, I was misinformed I suppose from the get-go. The surgeon doesn't even DO disc replacements! The staff assured me when I was making my appointment that though they couldn't tell me what kind of disc he preferred to use, he does work with another surgeon in the practice that does use the mobi-c (the other surgeon is booked into antiquity), and that they often work together/share techniques. Uh uh. Yeah, so that was a totally awkward appointment--I knew more about disc types than this guy did! He was very nice at least, and said that it sounded like I had done my research. He only does fusions, and he said because of my age, he wouldn't do a fusion unless I was pretty much unable to walk or use my arms anymore. Not a total waste of time, but also not very informative. Now my only option for a different disc type is to go to another city. *sigh*

I actually made a separate thread for this question, but I thought maybe for consistency in case anyone is following this in the future that I might post it here too. Here's the latest with my decision-making process:

This week was super busy with surgical consults for me, and now I'm at the point where I just have to make a decision. I've seen three surgeons in total now, and of course each had slightly different opinions of what kind of surgery to do (or not do).

I had a remote third opinion earlier in the month with a surgeon in the city north of me, which preliminarily said that he would do an ADR with the Mobi-C implant. I was super happy, because my first surgeon used the Pro-disc, which I wasn't sure about, and then I was unable to get an appointment to ask more questions about it until very close to the surgery.

Two days ago I saw the other surgeon in person. I was excited because I thought I already knew what he would say, given that he'd already written up an initial opinion. However, this surgeon had me get a new MRI, and also had me do flexion/extension x-rays. So then he tells me that on the x-rays have retrolisthesis, and because of that, he would no longer want to do the ADR; he'd want to do a regular fusion instead. I understood the rationale perfectly, but I was pretty upset because I've been so sure that ADR is the way to go, and the second surgeon I saw told me to avoid a fusion basically until things were really dire.

Given that information, I tried to push harder to have a follow-up consultation with my first surgeon. I must be getting better at this whole medical office persuasion business, because I got an appointment for the next morning! I tell the original surgeon what the other guy said about the retrolisthesis/fusion thing. He looked at my films and said yeah, there is in fact some retrolisthesis there, but it's really mild, and that he would still prefer to do the ADR. In fact, he said if it was his own neck, and his films looked like mine, he would put an ADR in his own spine. He was definitely confident.

Then I brought up my concerns about the Pro-disc, and he said that he usually defaults to the Pro-disc for a single-level ADR because it's got the most data on it, since it's older. To my surprise, then he said that if I felt more comfortable about the Mobi-C, he does use that one too, and he would have no problem using the Mobi-C instead if I wanted it! I was so happy because that was pretty much everything I was hoping to hear, but didn't think I would.

So now I guess my only concerns now are about the retrolisthesis issue--both surgeons seem equally and diametrically confident that it either is or is not a problem for the ADR. I obviously really prefer the ADR option, but I just want to make sure I'm not making a foolish decision by ignoring the third surgeon and his concerns about the retrolisthesis.

JinSong,
Have you had a consult with Bertagnoli in Bogen GmbH?
He is reputed to be quite skilled in C level ADRs so I am just wondering as I haven't seen anything in your posts regarding looking his way...

Hi Fathub,

I haven't looked into any of the surgeons in Europe--unfortunately, there'd be no way for me to afford a trip or a surgery out of pocket like that. I'm a PhD student in the U.S., so I'm pretty much tied to whatever my health insurance will cover. In fact now that's the other part of this equation: waiting to see if my insurance will approve the ADR in the first place.

Regarding this:

"...there is in fact some retrolisthesis there, but it's really mild, and that he would still prefer to do the ADR. In fact, he said if it was his own neck, and his films looked like mine, he would put an ADR in his own spine. He was definitely confident..."

You may want to get a more precise assessment on this. Every doc and disc mfr. has slightly different contraindications regarding retrolisthesis, so be careful. The flexion-extension images are usually helpful to the patient and doctor on this. Make sense?

See this link, table 1 and references: http://www.ncbi.nlm.nih.gov/pmc/arti...25514/#CIT0007

And for review: https://en.wikipedia.org/wiki/Retrolisthesis

The flexion/extension x-rays are what made the retrolisthesis problem come up in the first place--the first and second surgeon I saw didn't ask for them, but the third surgeon did, so I went and got the images. Then during the third surgeon's consultation he noted the retrolisthesis on the flex/extension films. After that, I went back to my first surgeon to review the x-rays and discuss the third surgeon's hesitation for doing the ADR, because I wanted his opinion on that issue.

Neither surgeon gave me a measurement in terms of grade of retrolisthesis, although the one that still wants to do the ADR said, "It's literally just a few millimeters," so I'm guessing that it's a grade 1 retrolisthesis. I asked for the notes on both appointments, but neither has come back from transcription yet.

I would really prefer the ADR, and the first surgeon is so sure about doing it, but yeah, I don't want to make the wrong choice by going that way. It's so hard to decide what way to go...

I had the x-rays done at my primary orthopedic doctor's, so I contacted him to see if he had the radiology report on my flexion/extension films. I was hoping I'd be able to get a written number for the grade of retrolisthesis, but he told me that there was absolutely none noted. Both neurosurgeons showed me on my films, so I know there is SOME retrolisthesis in there, but like the second guy said, I'm guessing that it's very slight, since the radiologist didn't even mention it in their report. Not sure if that means I don't need to worry about it and should still go with the ADR option, or if I should be super concerned still. Tough choice!

JinSong,
I had 3 ADRs S1-L3 and because of my Spondylolisthesis at L3, I had a 360 mobility preservation cage put in.......http://www.dr-bertagnoli.com/360-mot...n-surgery.html
So far so good but it's really early.......Harrison can probably comment better on this as far as others and long term......

It's an option and Bertagnoli is good on C level.....

Oh my I've heard of heard of 360 fusions, but not of mobility preservation. How's it going for you? I'm curious about whether or not I really need to be concerned about the retrolisthesis at all since I have two very different opinions about it. I wish seeing one of the big name surgeons was an option, but at the moment, I'm just left to choose between the ones on my insurance that are at least in my same state. Still waiting for insurance clearance on the ADR...and then I have to figure out whether I pull the trigger on that or opt for the regular fusion.

Well now my insurance company has actually denied the ADR authorization--I know it's a common thing to have it initially denied, but my surgeon had already written a letter with a detailed spine history and his recommendations for them. Since they denied that attempt, he's going to do a peer review with the insurance on Monday. I'm sure it varies between insurance companies, but has anyone else ever had this happen? I'm wondering how long it usually takes to get an answer once they do the peer review.

Just to put a cap on this thread, the peer review rejection was almost instant, and then the third appeal was protracted. My surgeon's office tried to push for an expedited appeal, and that request was denied. After weeks of fighting, they didn't want me to wait any longer because I have progressive spinal cord symptoms. I go in for an ACDF tomorrow morning instead, and I am so, so upset. :( I wish I had a happier ending to my story.

Jin, you'll be OK. We are here for you. :look:

Thanks Harrison--sorry that I'm going to be "out of the club" now. I'm just so depressed. I'm only 32, and this just feels like the beginning of the end. With all the adjacent segment damage potential, and the fact that my other discs are already having issues, I feel like it's just going to be a daisy chain of fusions by the time I'm 40. Even if I can get an ADR approved in the future, we know hybrid surgeries are not really validated. I feel like I'm permanently screwed (literally, I'll have instrumentation with my fusion). Plus the protracted ACDF recovery and the hard cervical collar for 6 weeks straight that I am not looking forward to don't help. I'm just so upset :(

Ended up in the hospital for three days with the ACDF and it was pure torture. Recovery is not going well. I wish I could go back in time and un-do this, but they said my spinal cord was "dented," and this was the right thing to do, rather than wait for insurance to pass the ADR. This whole thing is a nightmare.

JinSong, I am so sorry to read about your frustration and pain! I have been following your story with interest, and I have been impressed by the systematic way you have gone about looking for the best alternatives. I am so sorry you were not in a situation where you could choose the treatment you prefered. I guess this is not much comfort right now, but as a fellow academic I can assure you that you are not going to be a phd-student for ever - and your economic situation is going to give you much more freedom in the future. If you, as a worse case scenario, get problems with adjacent levels further down the road, you will most probably be able to choose the treatment you prefer - and you will be able to stop the deterioration with an adr of your own choice. I gather from your previous posts that you are a very resourceful person, and I am sure you will get out of this even stronger. I really hope your recovery will be less unpleasant soon, and I wish you all good luck.

To add to pbrav's encouragement, there are a lot of new approaches that are being used to treat discs that are showing some damage but not enough to warrant surgical replacement. Stem cell injections are showing reasonable success for discs like that. You don't hear too much about them here because most people aren't in a position to pursue that kind of treatment: by the time there's enough pain to cause them to figure out why their back hurts, the damage to the disc is advanced and stem cell procedures would require more time than they have. For adjacent level damage, though, they do hold some hope. Laura had ACDT on her L45 years ago and hasn't had problems with it since.

Anna, I have never seen any verified studies of the effectiveness of Stem Cell injections other than the promotors thereof. Do you have any links to some bonafide studies?

This is a bit bigger question than I can answer quickly. I'll try to post something under Regenerative Medicine as I can. Quick answer: blind studies, implying the control group's getting needles stuck into degenerated disks with no effort to treat them, would seem to be medically unethical as we know that casually injecting disks can lead to damage or accelerate the damage that's already present. That means we're probably never going to find a published, verified, statistically valid, blind study. You're more likely to find long-term studies discussing outcomes but not comparing those against any control group.

So, statistically speaking from a purely science POV....it's snake oil at this point.

I believe that your opinion isn't supported by facts. I did ask that you give me a little time to put together a better answer for you

Anna........I would respectfully say YOUR opinion (at this point - which is what I said in the last post) ISN'T supported by facts.
I'm a man.....I run on logic and at this point I don't see anything to support your claims......now, if you got irrefutable evidence....I'm all ears but I'n not believing at this point in Stem Cell treatments.
I'll be patient and wait.

I'll just weigh in with the "fact" that there are many different kinds of stem cell treatments; many variant techniques; and many conditions treated.

I had stem cell treatment using my own blood at IBC in Tijuana. I've spoken with dozens of patients through the years who have seen successes. AnnaPurna's comment is accurate and is also based on years of personal experience with stem cell treatments.

Facts can certainly exist without government studies. Hell, I would be dead now if I depended on doctors and their fortresses of medical data to tell me what is safe and what is not safe!

My story: http://www.whyamistillsick.com/story/

Harrison,
Understood as after phone interviewing a ton of Bertagnoli's (and Ritter-Lang's) patients, I made a decision based on verbal interviews alone.
That being said, with the length of time that SC injections have been done......I'm really insisting on a scientific studies as the BS out there right now on snake oil solutions is at an all time high....
But I'll be patient and wait for anyone to show me..... ;)

Thanks for the kind words (and for following my story). I really was trying to do the best I could for my situation, which is part of why I'm so upset/frustrated by the way it ended. Recovery is still going very poorly, and I'm having problems getting enough pain medication to keep me comfortable--it's just constantly chasing the pain, worrying about running out of medication, and worrying about not being able to get refills. I'm also not at home because I did the surgery out of town, so I'm not really in a comfortable spot either. I'm really wishing I'd never gone through with this, but it didn't seen like I had much of a choice.

As for the future, I'm rather on your side with the experimental nature of all the stem cell injections and whatnot--not something I'd want to try without more evidence (and my insurance won't cover it anyway, which was half the problem in the first place). Now I'm mainly depressed because I feel like I've permanently ruined my neck. Even if I can get an ADR at the other levels in the future, all the studies I've read about hybrid procedures are bad. Correct me if anyone's seen more favorable outcomes because I wasn't specifically looking for hybrid procedure studies before, but it looks like doing a hybrid ADR/fusion is even worse than just doing the stupid fusion itself :(

I'm so sorry you fell after your surgery! I think you deserve one of these huge get well cards. I sure hope your story gets better and that you feel better soon. From another desert dweller. Hang in there.

http://i65.tinypic.com/w8q1ch.gif

Thank you! It's been really tough--getting out and walking around a little bit was kind of the "highlight" of my day, and it really sucked after I fell down the stairs and messed up my ankle. I don't have any help at home, and I didn't get any formal time off work, so that really made everything extra difficult for me. The ankle's not broken, but the sprain damaged the ligaments enough that I need to be in the walking cast until it heals and the inflammation goes down. Sucks even more because I did the ACDF I'm not allowed to take any NSAIDs, which would really help with my ankle.

I had a great neurosurgeon, but they're two hours north of me, and I've had issues getting consistent pain medication post-op (the falling down the stairs bit didn't help). I mentioned it a bit above, but the hospital I was at was a total train wreck--I'm still traumatized from that whole experience. And I'm still pretty upset that I'm fused too, but there's nothing I can do about that now. At least I can feel my hands again.

I was just reviewing your posts again. I sure hope you are feeling a little bit better now. Your story is very similar to what I have experienced here. I know others in our state that have also struggled with getting decent care. I think our options are not the best in the country here and that includes The Barrow Institute which was just a big frustrating experience for me. I waited three months to get an appointment only to find that the office misinformed me on the surgeon using Mobi-C's. I vented all of this in my threads last year. My insurance won't let me go out of county so, unless I can change that in the future, I'm pretty limited in my care.

I reached out to many neurosurgeons in the U.S. and Europe last year. I never did get a consensus.

Down the road, you could look into getting ADR's next to your fusion provided your facet joints are not in too bad a shape. I know several people online who have had a fusion replaced with an ADR. When the body does not fuse properly, the surgeons can replace it. Theoretically, if you get an ADR next to a fusion, it will stop the degeneration of the adjacent discs so I've read.

I was just asking a patient yesterday if Dr. Clavel in Spain could replace a solid fusion. I thought it could not be done (and perhaps it can't) but, he seemed to think it could be done and he's over in Spain right now. If I can proceed with my surgery plans in Europe, I'll be sure to talk to Dr. Clavel about this because one of my levels autofused already and I'm pretty sure it's solid. It's a long shot I know.

I sure hope that you are feeling better and that you will have better options in your future. I know how hard it is to live with these problems and pain. Many others here do as well. Hang in there and don't give up.

Oh yes, I'm at Barrows as well, and I LOVE my surgeon (Dr. Fusco), but I have had frustrations with their system, and the hospital I ended up at was an absolute nightmare (my surgery was done at Chandler instead of the main hospital downtown). I'm surprised your surgeon there didn't do Mobi-Cs! That's specifically why I went up there, and as you saw, I lost my case for it, but because of the retrolisthesis issue, the Barrows surgeon actually wanted to do the ACDF anyway. I think he was a better surgeon than my other option, so I went with him anyway. Did you actually do your surgery at Barrow?

This is kind of an update of this week:

I was having a horrible time getting pain management, and physical and emotional support, and there have been *some* improvements in some of those areas. Some people have helped me out more, while others have been outright abusive, but soon I should have more independence and be less at the mercy of other people's ability to help me out.

I survived my 7-week follow-up appointment today. Turns out the reason I'm in so much more pain is because the spacer (PEEK cage) in my fusion is oversized. The disc had been extruded so long that there was a ton of arthritis in the space, so the smaller cage was too loose, so he used a bigger cage that stretched the area much more. Now that one disc space is a lot taller than the others in my spine, which is aggravating everything.

Thankfully, he wants me to go to the spine group's PM doctor to do facet injections to bring down the inflammation and hopefully break the pain cycle. Before he told me to cancel that appointment (because he wanted to manage my case for at least three months), so I'm glad I kept it! I asked him where he thinks about my scapula pain and my continuing right arm pain are coming from, and he didn't really have an answer other than it could be just from spinal cord damage, or it could be from somewhere else. So PM might end up doing more epidural injections too.

And I told my NS about how I was having issues with pain control, and not getting meds refilled, and asked if we could just make a plan for when and how he'd want me to taper, and if he could give me a bigger prescription that more closely matched that. So he gave me bigger scripts this time at least so I don't have to play beg for medications every five days (they kept promising to mail me refills that would never come). Ironically, I get home, and a week and half later the other prescriptions they'd promised me were also in the mail!

I was upset because on my post-op xrays, I'm definitely not fusing yet, which he was concerned about, but not *freaking out about* I have a vitamin D deficiency, so I'm supposed to increase my dose of that and re-recheck xrays in three months. Like a lot of us, my neck lost its natural curve from muscle spasms, so he was like hey! The fusion gave you back some natural curvature...in one spot at least o_O So that's...good?

Despite that, he's still going to let me start weaning out of the collar over the next two weeks, as long as I'm careful, so I'm happy for that. No more sleeping in this thing!!!!

I'm a little scared for more neck injections, but happy that there's a reason for my continued pain, it's been validated, I got more medication, and there's a plan for how to move forward from here other than just *sit around and suffer*

So, I don't know what I'll do if I don't fuse, but it is good to know that it *might* be possible to replace it with an ADR, if I had to/need to. It's hard not to be worried about ASD given my ongoing issues and the other discs that are already bad, but what's done is done. I'm just happy there's a plan to manage my pain for the moment, and more independence is coming soon--boot should be coming off my leg in the next week or two, neck brace is being weaned off, and once I fix my car I'll be able to drive and be less reliant on others to help me. I'm still in a lot of pain, but just knowing things are going to be done about it makes me feel better mentally.

Thank you so much for checking in with me--I don't know what I would do without online support forums like this one. This stuff literally steals your life, and it's so hard to explain/share with people that haven't lived through it.

Hey folks, it's meeee again. Not sure if replying to my old, original thread is the best place to put this, but I thought I'd start here. So much has changed since I first posted here...getting close to a full year ago. Wow.

Welp, I lost my appeals for an ADR last spring and had a C5/6 ACDF back in March. Since then, life has been AWFUL. Nothing has improved. I've got migraines, constant spasms, my old symptoms never resolved, and now I've got all those new issues. I'm seeing neurologists, doing physical therapy, on every drug known to man, and I've had every injection procedure out there (a bit of hyperbole, but seriously, I'm getting to the point where I've exhausted my options).

Meanwhile, I've got my own neurosurgeon telling me my pain has nothing to do with the ACDF surgery, and everything looks fine, other than my oversized graft and incomplete fusion. Yeah. Right. These problems just "magically" appeared after I had major surgery and never resolved. No connection at all.

I've been so depressed from the constant pain and the total disruption of my life and finances that this has caused, I've seriously been considering suicide, and I even "practiced" a few times. I've been ready to just say goodbye to this all.

Then a friend of mine poked at me and said that I needed to start talking to other surgeons for opinions since you know, surgeons have something of a biased opinion of their own work. As you can see from my signature probably, besides C5/6 which is currently fused (well not really--the graft's not taking), I've got other herniations in there. I need to update my signature because I'm the ripe old age of 33 now, ha.

Anyway, someone told me to send my imaging and history to Dr. Kenneth Light in San Francisco to see what he had to say about my case, since he's one of the people in the country that specializes in revising fusions to ADRs. I can't afford to go to Europe, but I live in Arizona, and I have friends in San Francisco, so doing surgery there wouldn't be impossible...and miraculously he's on my insurance plan.

So he tells me to send in my materials and he offered to review them for free, which I thought was quite generous. I figured he'd get back to me and say sorry Charlie, everything looks structrually fine (as my surgeon keeps saying). Not so much. He says at this point, 8 months post-op, the amount of fusion I've got in my graft is minimal, and probably contributing to all my pain. As well, there's a high risk of a non-union (aka failed fusion). My surgeon keeps claiming I'm fine, but he's actually been using the post-laminectomy syndrome/failed fusion CPT diagnosis codes on my paperwork. I know you can't technically call it failed until you're a year post-op, but in any event, things aren't looking promising there. In addition, he thinks my C4/5 now looks bad enough to be contributing to my pain as well. I thought I'd get like...I don't know a few years out of this stupid fusion before succumbing to ASD, but I guess not. I freaked out for a second, because the prospect of a 2-level fusion and a revision surgery, meaning two big surgeries within the same year was terrifying.

Then he says to me he'd revise my 1-level fusion into a 2-level ADR. THAT'S WHAT I WANTED IN THE FIRST PLACE. I know I need to get my expectations in check because there are so many variables here to consider, insurance and financing not being the least of my concerns. But literally nearly gun in my hand (not an actual gun...but things to end my life) were laid out on my counter when I got that message. Just the idea that I might have hope of SOME improvement in the hell I've been living in for the last 8 months--probably only those of you on here who have lived through the same pain and feelings can understand.

And now I have questions. Can you help me? Has anyone here had surgery with Dr. Light? I know there's a separate revision forum, but I haven't actually had the revision surgery, so I wasn't sure if I should post in there. Are there other U.S. based revision specialists I should be looking at before diving in with Dr. Light?

ANY insight would be so deeply appreciated.