How many levels are too many when it comes to cervical ADR?

[scotto74]

Hello everyone,

I'm still agonizing over my surgical decision, but realize I need to move quickly due to the compression on my spinal cord which continues to cause stiffness and pain in my legs, weakness in both arms, and some clumsiness and loss of strength in my hands. I'm also getting fairly constant headaches now, which seem to be coming from the upper level discs in my neck, which are causing me some trouble sleeping. Anyway, I've pretty much narrowed my decision down to either a hybrid surgery (fusion at 6/7 and ProDisc at 5/6) with Dr. Bitan in NYC or a two-level ADR (M6) with Nick Boeree in the UK.

While almost every surgeon I've consulted with agreed on addressing the most severe problems at 5/6 and 6/7 first, most also acknowledged that I have surgical problems at almost every level in my neck. So when I consider the strong probability that I will likely need additional cervical surgeries in the future (I'm 36 now), I then struggle with what the right approach is for this first surgery. Perhaps a two-level fusion is the right starting point (although I don't believe so given how quickly it would wear out my already degenerated adjacent discs), and then have ADR above the fusion level at some point in the future? Also, I wonder how many levels of ADR it makes sense to have in the cervical spine. I've heard that 2 or 3 levels seem to be the upper range for most surgeons -- but is that just 2 or 3 at one time? Could you conceivably have 5 of these ADR's in your neck if you did it with a phased approach over a number of years?

I know that one member -- Jeff I believe -- has a two-level fusion book-ended by two M6's and that has seemed to work very well for him so far. Most surgeons I've spoken to (including Bitan, Boeree, Stenum, UCSF, and others) have not really offered much in terms of what the best "long term solution" should be -- rather, they have acknowledged that it's a complex situation and focused on how they would best address these two levels that clearly need surgical intervention now.

Sorry for all the questions and rambling thoughts, but I'm just agonizing over this decision. And I'm not looking for medical advice, just thoughts, opinions, a sounding board... anything that might help me as I hopefully finalize my decision this week.

Thanks in advance for the help!

Scott

[KBear]

Scott- I wish there were an easy answer to those questions, but it's really each persons individual choice. Personally, I would not have more than 2 ADR's in a row. I believe at this point that the discs available can allow too much movement when there are too many and can cause more problems. There are plenty of people with 3 levels who are doing great though and there are also plenty who had 3 levels and regret it. I would personally go hybrid if I needed 3 or more levels. With your particular situation, knowing that you are going to need more spine surgery down the road, I'm not sure what I'd do. My first thought was have the double fusion, then when technology is better and more is known on the current new discs, have ADR. But you bring up a good point that the fusion could cause quicker degeneration. I think the double fusion 'sandwiched with ADR's' would be a great compromise and would be curious if any of the surgeons you are considering would do that. I think I'd rather get it over with now, than heal from this surgery and need another in a couple of years (even with ADR, there is no guarantee adjacent levels aren't going to go out within a few years. We have several members who had that happen.)
I wasn't much help there, just thinking out loud. Hope you find a good solution for you.

[JPJH]

Scott,

Dr. Boeree is an excellent surgeon. If his opinion is a two level ADR using the M-6. That's how I would go. I just had a two level cervical ADR (4/5 & 5/6) using the M-6 with Dr. Clavel in Barcelona and have had an excellent outcome. I am four weeks post op and back to work feeling good. My feeling was/is if the ADR whatever device you use ultimatley does not work then you can turn to fusion. It does not work the other way around.

Not and easy decision I know. It was a two year process for me to finally come to the point of having my surgery.

All the best to you.

JPJH

[KBear]

Scott,

Dr. Boeree is an excellent surgeon. If his opinion is a two level ADR using the M-6. That's how I would go. I just had a two level cervical ADR (4/5 & 5/6) using the M-6 with Dr. Clavel in Barcelona and have had an excellent outcome. I am four weeks post op and back to work feeling good. My feeling was/is if the ADR whatever device you use ultimatley does not work then you can turn to fusion. It does not work the other way around.

Not and easy decision I know. It was a two year process for me to finally come to the point of having my surgery.

All the best to you.

JPJH

Unfortunately, it's not that easy. Your chance of a successful fusion after a revision are way less than just having a fusion in the first place. A lot of people (myself included) go into ADR surgery thinking "if this doesn't work out, I'll just have a fusion". That's wrong and it's not that easy. You can die during a revision, it is an extremely risky operation and not always successful. There are several on here who have unsuccessful revisons or less than desirable revisions (read in the post op forum.) Not trying to scare you, just trying to play devils advocate.

[scotto74]

Thank you both for responding, I really appreciate it sincerely!

JP -- I agree that Dr. Boeree also seems to be an excellent surgeon, and I was very impressed by his knowledge and analysis of my spine during our half hour phone consultation. I also think the M-6 seems like a pretty amazing device. If surgery with him were covered by my insurance, I would definitely be done deliberating I think!!

KBear -- Thanks so much for sharing your thoughts and ideas. As for addressing the additional levels in my neck and the possibility of the "sandwich" or "book-end", most of the docs thought it was best to address just the two most severe levels first given my age. I guess the thought is "less is best" at first, although I have to admit that I would love the idea of fixing my whole neck with one surgery, if that were possible. The only surgeon who proposed a possible 4-level surgery (4 ADR's) was Dr. Bertagnoli. That seemed a bit extreme to me. Another surgeon in NJ (a fusion guy) said that if I walked into his office with my same exact films and were 60 plus years old, he would strongly recommend a 4-level fusion. Texas Back Institute said I was "not surgically remediable" and all of the others thought the right approach was just to try to address the two levels where I have the worst cord compression.

The idea of the two-level M6 surgery that really excites me is the possibility of protecting the discs above and below the surgery level, where I have some herniations and stenosis. However, I worry about things like auto-fusion or the need for a revision. Sometimes I think start with the two-level fusion, and try to see how long things can go from there. However, Dr. Boeree said he would strongly recommend against a two-level fusion with my spine, and Dr. Bitan said if I had a two-level fusion I would be back for more surgery in 18 months or less. So I feel like I'm a bit stuck between a rock and a hard place!

Sorry for rambling on so much, I just have so many thoughts swirling around in my head about what to do -- what's the best move not only for now, but for the next 10 or 20 years. And I am not a good decision maker to begin with!

Anyway, thanks again for listening and responding, I do really appreciate it!

Scott

[Metalneck07]

Scott I just wanted to throw my two cents in here. I absolutely agree with KBear that Revision surgery should not be taken lightly. I had a fusion on my C5-6 back in 07. Now of course ADR was in the early stages at the point so it was not an option for me. I would have given it a strong consideration. So my Fusion went horribly wrong my doctor used BMP-2 in my Cervical something the FDA had never approved to be used there. 2 months after my surgery I had 3 screws that had backed out and a mess. No surgeon at that point would help me out with a Revision. It took me 2 long years of pain and searching I finally found one doctor who would help me. But he was very up front that Revision is very dangerous and there is a very high chance that my Cervical would never be the same. I went ahead with surgery because I was at the end of my struggle . Revision was Hell I wish I had a better term but this is it !! It has to be taken very seriously. I recently has surgery again on my Lumbar and I personally struggled with this very concern.What if my ADR doesn't work ?? Will I be ok with living with it. Revision would be far to risky.
Ok So sorry for how long this is. But I know your searching for all the information you can to make the right decsion. I wish you the best of luck. And I really wish for you pain free days soon !!
Caitlin aka Metalneck07

[scotto74]

Caitlin, thanks so much for responding and sharing your experience. I am so sorry to hear about all that you have been through with your failed fusion and years of suffering. My oldest brother (he's 44) has had three failed cervical fusions and is likely headed for a fourth surgery soon. I've witnessed how much it has taken a toll on him, so I can only imagine what you have been going through. I'm so glad to hear that you seem to on the path to recovery and that your latest surgery was a success! Thanks again for sharing your two cents, and I hope for lots of pain-free days in the future for you also!

Scott

[Justin]

Hi Scott,

It looks as if you have really been doing your research and thinking things through. If I were in your shoes, I would opt for the two-level artificial disc replacement (ADR) surgery. Cervical ADR has had better outcomes than lumbar cases due in part to anatomy and the differences in load between the cervical and lumbar spine.

With cord compression, moving forward is pretty much in your stack of cards.

Texas Back Institute said I was "not surgically remediable" and all of the others thought the right approach was just to try to address the two levels where I have the worst cord compression.

Can you elaborate on TBI's view on your spine? I'm guessing that their line of thinking is that the ADRs won't address your stenosis.

Sometimes I think start with the two-level fusion, and try to see how long things can go from there.

This is an interesting point. One thing to remember is that both spinal fusion and artificial disc replacement surgery will permanently burn bridges. Both procedures alter the normal anatomy of the spine.

However, Dr. Boeree said he would strongly recommend against a two-level fusion with my spine, and Dr. Bitan said if I had a two-level fusion I would be back for more surgery in 18 months or less.

I would think long and hard about why these surgeons are strongly stating that fusion is not a "good" idea in your situation. Is it because they both implant ADR devices? I'd say not--Dr. Bitan is a world-renowned scoliosis surgeon that utilizes fusion for very technically challenging patient cases. They both see something on your films that makes the case for ADR.

Sorry for rambling on so much, I just have so many thoughts swirling around in my head about what to do -- what's the best move not only for now, but for the next 10 or 20 years. And I am not a good decision maker to begin with!

This line of thinking is key. It's easy to think "we'll do it like this and then address these other issues down the road." Yes, less surgery is better, but you have to ask yourself is "less" surgery the result of current FDA regulations or something else. Also, Kathy stated a VERY important point above: the thought process that I'll get an ADR device now, and then get a fusion if things go South is profoundly flawed. This type of thinking was even suggested by top spine surgeons involved in the United States clinical trials, but it has evolved to exclude this thought process and for good reason.

I stink at making decisions too. At the end of the day, it will come down to what you feel comfortable with and the skill and expertise of your surgeon. Personally, I believe that the type of device is far down the list (all ADR devices compromise the spine in some fashion). Every device has "pros" and "cons" associated with it, as does any surgical intervention [fusion, mircodiscectomy, artificial disc replacement, etc.]).

One huge plus in your favor is your age. You'll not only heal faster, but any degenerative process you have and its associated collateral damage will not be as severe as other Spine Patients that have had long-standing, unaddressed issues spanning decades.

Good luck in your decision and keep asking these great questions--they will ultimately serve you well!

[Katie]

I've had the pleasure of having a consult with Dr. Bitan about eighteen months ago. He went above and beyond trying to get our insurance to cover what he considered an urgent surgery, to no avail.

I also had serious compression at C5/6 and moderate at C4/5. Dr. Bitan recommended a hybrid, with the fusion at the lower level. Since I had lumbar problems too, I couldn't figure out what levels caused which complications. When my arms and hands started to go numb, I really started to sweat, as I'm an artist by trade.

While every other out of country surgeon recommended two level cervical surgery, Dr. Pimenta from Brazil, who eventually did my surgery, only thought that the C5/6 needed work. He used a Nuvasive NeoDisc, a very non-invasive ADR as they go, as they are only held in place initially with four screws in the side of the vertebrae. The mesh that surrounds the silicone 'disc' eventually melds with the vertebral end plates.

So far, all my neurological symptoms have disappeared. No more erratic gait, numbness, bladder problems, etc. I can now pass a sobriety test if pulled over I was very surprised that surgery at the one level would be effective, but he was adamant that it would work.

So I guess I'm rambling too, but just telling you my experience.

[scotto74]

Justin -- thanks so much for the long and thoughtful response! You definitely make a lot of excellent points, and have given me some things to think about. I think if the whole cost factor and insurance nightmare process were taken out of the equation, I would be heading over to the UK with Dr. Boeree. However, I also like the idea of being a little closer to home (Philadelphia) with Dr. Bitan in NYC. Either way, I hope to have this decision process wrapped up this week (fingers crossed). With regard to your question about Texas Back Institute, it really was a punch in the gut when they told me that. After several follow up calls and voicemails, someone from their office finally got back to me. However, they were really guarded in terms of what they can say (due to Texas law) and would only keep repeating that the docs (multiple doctors there reviewed my films) thought I was "not surgically remediable". I've copied a portion of a post I made on another board related to this same question:

I also wanted to close the loop on the Texas Back Institute issue. I finally was able to get a hold of someone at their office to discuss the "not surgically remediable" diagnosis. While I really pressed hard (in a very polite and thoughtful sort of way) for further information, I was told that by Texas law unless they actually see me for an office visit -- they can only say "yes" they think I am surgically remediable, or "no" they don't think they can help me surgically. I really pushed hard to try to further understand the reasoning behind their assesment of my case (as it might be helpful in my journey), but to no avail. I did infer, however, from the discussion that perhaps they thought I was not a good candidate for ADR and it would not make sense to travel all the way to TX for a fusion. Hence, the referral to a surgeon at the Rothman institute in Philadelphia. However, that's just a hunch from what I was able to discern from my conversation. So time to move on!

Katie -- thanks so much for sharing your story. I have not reached out to Dr. Pimenta yet, but he seems like an excellent surgeon and the NeoDisc seems like a unique and promising device. I'm so happy that you have found relief and improvement in your neurological symptoms -- it definitely gives me some hope!!

Thank you both for responding -- this board has definitely been a great resource in terms of helping me to talk through some of my concerns and questions, while at the same time feeling a part of a community of people who are all going through similar challenges and life experiences. Thanks again!

Scott