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laurenmiddleton1 04-10-2014 06:52 PM

Any experience with AD moving out of place
 
My AD at C4 has moved out of my spinal column by more than 50% at this point. It has moved to the front of my neck. I am including a picture of my x-rays. Has anyone had experience with this?

http://i168.photobucket.com/albums/u...404_092120.jpg

drewrad 04-10-2014 09:25 PM

Is that a ProDisc? When was the date your implant was put in and who was your surgeon.

laurenmiddleton1 04-11-2014 07:15 AM

Yes I believe it was. My surgery was Oct 2010 and my surgeon was Dr Virones . He is a neurosurgeon at Moffitt Cancer Center (I didn't have cancer my mom is an RN there) in Tampa, Florida.

I live in Houston, TX now

laurenmiddleton1 04-11-2014 01:22 PM

Getting frustrated with surgeon
 
My husband and I really like my new surgeon when we met him last week. He was very honest and complete with us both and our questions.

I had an MRI on Friday. I was told that the results would be back Mon or Tues and posted on my patient line on Tues or Weds.

Nothing so far. I spoke with his nurse yesterday (after calling twice) she said he was going to dictate it yesterday afternoon and it would be there for me to listen to. But so far nothing. He was going to decide what exactly he needed to do and if there were multiple levels. Then they would get approval from Ins. and then we could schedule.

I honestly get all that, but I feel like my situation is sort an emergency. My C4 AD is coming out the front of my spine and is over 50% out already. My arm is going completely numb, I have no strength in it, the pain is horrible, and tingling is getting worse by the day (this I am sure is from a lower disc problem, probably C7 level under my previous fusion)

Ok vent over! Again I really like him and don't want to switch but not sure I am happy with the flow of info from his office.

P.S. this is my first surgery with him.....


[IMG]http://i168.photobucket.com/albums/u...404_092120.jpg[/IMG]

drewrad 04-11-2014 02:27 PM

I assume you have already talked to Dr. Virones. What has he said about your situation?

Also, was there any kind of jarring event that would have caused this?

drewrad 04-11-2014 02:36 PM

I just blew up the image to see it up close. Wow. What a horrible spot to be in! I feel for you.

I can definitely see those fused discs under the failed implant and the bottom c7(I think) whose space is also nearly collapsed. I would also figure that that is where your new pain is coming from, down there.

You really need to find out why this ProDisc came out. The reason why I say this is because I think the best solution would be to have two new ADRs put in, one above and the other below the two fused discs. As much as you may be against ADRs due to your experience, I wonder how much of this had to do with surgeon error as opposed to either device or bone density problems. From a strictly mechanical perspective, if you went with fusion again, it would mean your entire neck would be one long immobile column. I don't know how old you are, but I would think a competent doctor, either in the US or overseas, would be able to address this issue with you and suggest bookending the fusion with ADRs. Just my opinion.

Get 2 to 3 more opinions if you can afford the wait to do so. And get the best ones to give it. You need to move quickly.

laurenmiddleton1 04-11-2014 04:22 PM

Any experience this before
 
Yeah Dr Cartwright says he doesn't think I would be a candidate because of the healthiness of the bones. He would not do an ADR even if I wanted it. Which honestly I don't. I am terrified of this happening again.

I was thinking of calling my PCP and see they recommend another surgeon on Monday if I don't hear from him by this afternoon.

My real main concern is that I can't find any information on what this does while and after it is being pushed out. Apparently this is very rare.....


If anyone has experienced this I would love to hear your stories....

pittpete 04-11-2014 05:24 PM

I'd call up the TBI and get there ASAP.
Texas Back Institute

Jerry5 04-11-2014 08:21 PM

Hard to reply
 
sorry, but this is scary, don't want to sound the alarm bells, but if this were me, I would find a good Dr, overseas, that has experience with motion discs, I have read a lot about the M6, and Like the post above me, I am sure that this would really scare you from seeking an opinion, about more ADR's.

This is probably the biggest reason for the FDA not allowing discs, they allow a few, like the Charite, the Prodisc and the Flexicore, and they fail.

Now they won't allow others, that do work.

The Charite works preserving motion, but like the Prodisc, has too much motion, and is hard on the facet joints.

This is a hard call, how many ADR's has this Doctor performed?

If I were you, I would send this to an experienced facility in London or Germany, and seek their advice, sooner than later.

Motion is better than a fusion, and if the disc is properly placed, it would not move like this.

Hope you can make the right choice, like some, or a lot of us, we deal with this,(some on a daily basis) an there is NO easy solution.

pittpete 04-11-2014 08:34 PM

Since the initial ADR had a large keel, is it even possible to have another ADR put in?
Being in Texas i would go to TBI ASAP

laurenmiddleton1 04-11-2014 09:30 PM

Current Surgeon will not do an ADR. He has done many many many in the past after previous fusions. But since this failed and feels the area is not "healthy enough" for it.

TBI is up North I am Houston.

pittpete 04-11-2014 10:49 PM

Lauren, i would drive 2000 miles to make sure i get the best care.
TBI is one of the best spine centers in the US.
Do you really want to fool around with a mediocre surgeon because he's geographically desirable? :uhoh:

Kelly4ADR 04-11-2014 11:43 PM

Lauren,
I just want to say I'm so sorry this happened! I will be praying that you find a quick and safe solution. And thank you for keeping us updated so we can stay informed on you and your progress.

Best,

Stonewall_Boris 04-12-2014 12:59 AM

Lauren,

Welcome to the forum, sorry for your situation that had you seek it out. I can't speak to the xray,but your post sounds urgent.
The doctors that I communicated with during my time deciding who to choose was all done while I was pretty much immobile. I didn't drive anywhere other than to get a MRI and get it on a CD. When you have that MRI on CD you can upload it as you did your xray and share it with just about any doctor around the world. If they don't want to bother to view your MRI that way, you can get software to "slice" the MRI into .gifs and send it to them in an email. Theres always help here for how to get images to doctors.
Some doctors I've heard named on the forum are Dr. Clavel, Dr. Bertagnoli, Dr. Bierstedt, Dr. Zeegers, Dr Ritter-Lang from Europe, all reachable via the internet. I'd suggest you Google their names to lead you to their web sites that provide contact info.
I'm going to ask those that had surgery in the US to help Lauren with US doctors and contact information.

jss 04-12-2014 07:09 AM

Lauren,

What a miserable position. Being "blown off" and ignored is infuriating.

I don't recall anyone ever coming to this site with both ends of a ProDisc migrating in the same direction. Neither do I recall ever reading of such an incident. In the early days of the ProDisc, there was the problem of the plastic insert slipping out of place, which immediately mal-aligned the vertebrae and required immediate surgery. It sounds like Dr Cartwright doesn't believe that you're condition is quite as serious.

Good luck on getting in quick. I hope you heard something from his office yesterday.

Jeff

laurenmiddleton1 04-12-2014 07:12 AM

It's not that I want to settle for mediocre care, but I have a 4 yr old and 7 yr old. We have a comfortable living but I will not go in major debt over this. There is more to think about than just me.

I do think I will request a CD of my MRI and discuss it with my PCP to see if there is anyone else that she recommends in the area.

I can't and won't travel out of Houston for the surgery. I trust there are competent surgeons here that will be able to fix this situation. I cant throw my children's lives into upheaval. We moved from Florida and it is just us here in Texas. My in-laws will be coming out after the surgery to help my husband with the house and kids.

Thank you all for your kind words, it really does make it easier to vent about it to people that understand.

laurenmiddleton1 04-12-2014 09:26 AM

Bad news found out suddenly ...
 
Hi I am Lauren, I am 36 I have had 2 cervical surgeries 2005 and 2010. The first surgery was a double discectomy w/ fusion. Never had problems with this one, still looks great on X-rays and MRI. However my second surgery in 2010 I had an ADR at C4. Everything seemed fine and as of 2 years ago it was perfect in place.

Well after deciding I would like to lose weight I started at the gym. Only doing cardio and added weight training.

Well on March 28th after working out with my trainer on my lats and shoulders, I began feeling weird pain in my L tricep. As the day went on it got worse and worse. The weekend was horrible. I went to the ER on Monday (3/31) afraid it was my heart. ER Dr. said it was a muscle spasm and that was it, I tried to explain I knew it wasn't. He referred me to a Ortho.

When I got home I called my PCP and asked her where she thought I should go. So I called KSF and made an appt with them for the following Weds (2 days later).

After they did some x-rays they could see what part of the problem was (picture below) My C4 AD has slipped out over 50% toward the front of my neck. Sometimes it rubs against my esophagus and makes it hard to swallow. They then made me see the Neuro-Ortho and he had me do an MRI. He doesn't think the pain, numbness, and tingling in my complete L arm isn't from the C4 but from my C7. But he wants the MRI to make sure.


So now I am in limbo waiting and waiting for info...... I hate this part....

[IMG]http://i168.photobucket.com/albums/u...92f71fbd59.jpg[/IMG]

jss 04-12-2014 09:43 AM

Lauren,

Sigh... Talk about a double whammy. If it helps any ... Reminds me of 2008; six years after my second cervical fusion I started having symptoms again. After the MRI the surgeon that did the two fusions said that I needed THREE MORE! Long story short, I had a double ADR (M6) and have done very well (so far) over the last 4.5 years.

It's hard for our untrained eyes to tell from an x-ray, but the disc height of your C7/T1 does look as though it may be less than your C2/3 and C3/4. Given your unusual experience with ADR at C4/5 I'm guessing that you're not going to be open to ADR at C7/T1 if that level needs surgery?

I suppose that addressing C4/5 is on hold until a plan is formed for C7/T1? How long until you can get your MRI? And then the appointment to discuss it with your doctor?

Condolences and good luck. Please keep us posted.

Jeff

laurenmiddleton1 04-12-2014 09:54 AM

Hey Jeff - had the MRI a week ago from Friday (4/4) waiting on the Dr to review it and dictate into patient portal so I can hear the results.

And yes that is exactly what he is doing.

Kelly4ADR 04-12-2014 10:02 AM

Lauren,

This must be very scary for you :uhoh: but this forum is a great place for support, and we are here for you!

In my journey in getting my cervical two level ADR approved by my insurance, I will be certain to keep your situation in mind as I talk to professionals and do research, and pass along any information that might help you.

Do you know what kind of disc it is? If you can contact the company that produced the disc and let them know of your situation they might be helpful in locating a DR with experience that can help you. It would be in their best interest to do so, anyway.

Please keep us posted on how you are doing and I will be praying for you.

laurenmiddleton1 04-12-2014 10:03 AM

I have not called him, I feel funny since my mother has gone back to work at the hospital. I don't want to make things uncomfortable for her.

Not jarring accident or event. Just very light weight weight training recently. Very light weight LOL

laurenmiddleton1 04-12-2014 10:11 AM

Kelly - Thank you. I believe it was a Prodisc

Jerry5 04-12-2014 11:28 AM

Placement
 
The remark above, about the large keel, lead me to think the same, and the comment from your doctor, about the bone being healthy.

This is a replacement, and does not have the large keel, this is a good idea for the neck.

Mobi-C One and Two Level Cervical Disc Replacement |LDR Cervical

You may want to contact the Company, directly, and ask for surgeons.


{Side Note, I would contact the Company directly, get a surgeon that can and has implanted these, with experience, you will get good results}


If you do not wish to contact someone in the EU, like Bierstedt, London Surgery, that could put in the M6.

All the Best,

Johnny Vegas 04-12-2014 12:06 PM

Hang in there Lauren
 
Just wanted to say hi and hang in there Lauren. It seems some of us have received the job of guinea pigs for emerging technology, just the way the game of life evolves, I suppose. Its very apparent that many regular docs are very unaware of spinal and chronic pain issues, so it was a good thing you trusted your instincts to make some phone calls after the ER doc was ready to dismiss you!
I am also currently considering further options, and you can atleast consider yourself lucky if you can still reach your adr manufacturer for post op issues.
Welcome, hang in there and cheers:beer:
p.s. There are some very good resources on mind and mood control for chronic pain. I was required to take some classes by my insurance company:raspberry: , only to be surprised by the fact that it actually does work!

Harrison 04-18-2014 12:06 PM

Lauren, I am so sorry...this looks serious. Did you identify a surgeon yet who has revision expertise? Where are you located?

RobertM 04-20-2014 09:28 PM

I am sorry for the position you and your disc are in. But what would happen if it came all the way out? I don't want to sound stupid but would it just be a collapsed vertebrae or would you be paralyzed. I don't want to come off as insensitive for asking and mean no harm, but I have never heard of this happening like this. Good luck and lots of Prayers.

Harrison 04-20-2014 10:20 PM

Important topic -- but will be merged
 
Laura, just finding these same topics now on your dire situation -- pls post to this topic -- so we can follow and reply to you with better understanding and clarity.

Again, I merged the different topics that were in different places. They are all now here. We are here focusing and praying for you now! :)

Discinterested 04-21-2014 06:58 AM

This post is not aimed at lauren, but just to add further thoughts to the idea of replacing the prodisc with another ADR. Any talk of replacing a failed ADR with another ADR is sure to raise eyebrows and it certainly bothers me too, and I tend to scoff whenever anybody suggests it. In particular my concern would be the failure of adequate osseointegration. It would seem doubtful that the titanium coated prodisc had properly integrated, so could it be certain that another metallic disc design that solely relies on bone ingrowth for adequate fixing would be more successful? The two fusions obviously put a different perspective on things and if there is a viable ADR option it has to at least be worth a thought, since adding further fusions is known to carry increasing risks of trouble with adjacent segments. Replacement of the prodisc with another ADR can only be considered if it has a fixing to ensure the same thing does not happen again IMO, or at least to give peace of mind. Perhaps a good replacement ADR would be the Neodisc. It consists of a silicone nucleus wrapped in fabric and held in place at the front of the vertebra with screws so it cannot move. It has no keels, does not rely on osseointegration, placement error is minimised and it also requires minimal tooling for insertion. I know the neodisc is not news to most people here.

So sorry Lauren to see you in this situation and having to make such huge decisions when time is against you. It would be very good I think if you can get a consultation or two from top pioneering surgeons, perhaps ones outside the US that are not bound in too much red tape etc. just to see what they say as I think this is quite a rare case. It would be good to know what all your viable options are before making a decision, even if some options might not be unavailable to you.

Brian

Harrison 04-21-2014 10:08 PM

Brian, if you search Neodisc, pls share with us your impression of the outcomes. I have not done this in a while. That said, I've talked to a few patients with disastrous outcomes. I don't think the product is on the market -- I'll do a quick check and add another post.

Harrison 04-21-2014 10:13 PM

I have no news on the Neodisc since 2011. If you search, nothing since 2012. Lauren, back to you: have you found an experienced surgeon?

Discinterested 04-22-2014 06:05 AM

Quote:

Originally Posted by Harrison (Post 105461)
Brian, if you search Neodisc, pls share with us your impression of the outcomes. I have not done this in a while. That said, I've talked to a few patients with disastrous outcomes. I don't think the product is on the market -- I'll do a quick check and add another post.

Sorry, i have never heard of a disastrous outcome with the Neodisc, but understand there were concerns (from forum members) regarding biofilm and HO risks with the design of the disc. A girl on this forum had the device implanted by Pimenta in 2010 and her most recent post in 2012 suggests she was very pleased with it. I had no idea of the disastrous outcomes and wonder if they could be worse than some of the other ADR failures. There are hundreds of Neodiscs out there including multilevel and I am surprised by the silence.

A little further research to see if the disc is still on the market and I think you are right. I only did a quick check before posting my above post and found a 2014 document suggesting a Dr Neel Anand uses it. I revisited it and it appears they are quoting old information. Thank you for taking the time to pick me up on that.

It appears the device completed FDA study but the "...sponsor of the study has[had] decided not to move forward with an FDA submission for approval" If I find out any further more up to date information I will let you know.

Harrison 04-23-2014 01:10 PM

Here's one adverse event with the Neodisc: MAUDE Adverse Event Report: NUVASIVENEODISCNONE

Lauren, any word on next steps?

laurenmiddleton1 04-23-2014 01:51 PM

Thank you everyone for you well wishes.

Yes my surgeon actually had a family emergency (death in his family) that is why I had not heard back from him.

But my surgery is now scheduled for next Weds (4/30)

I really wont even consider replacing this AD with another one, I believe the best plan of action is to remove it and then do a Fusion w/ cadaver bones at C4 & C5. I just feel like if it failed the first time, for whatever reason I don't want to take the risk again.

Still not sure why it moved in the first place, it was fine for at least 2-3 years and then started slipping out. But I just don't feel comfortable putting another one in. My husband is in agreement. I know the fusion will put more strain on my C3 and the fusion at C5 & C6. I also know it will limit my mobility in my neck but I would always have the thought in mind .. "is it moving" ... "has it slipped again" .... You know what I mean???

jss 04-23-2014 03:12 PM

Lauren,

That is good news; getting the surgery scheduled one week from today.

Here is a thought. You, like me, have DDD seeming moving both up and down your spine. (I have 2 ADRs and 2 fusions) One thing Harrison harps on, and I'm a little surprised that he hasn't mentioned it in this thread, is infection as a cause of DDD. Had I been aware of that specific etiology of spine disease at the time of my third spine surgery, I certainly would have had them test for an infection. I would encourage you to discuss this with your surgeon; the possibility of an undetected infection causing a domino of DDD in your spine. If that turns out to be the cause, he might have a treatment plan that will stop any further levels from incurring DDD.

Congratulations on getting a surgery date, and good luck next Wednesday. We'll be pulling for you.

Good luck, Jeff

Harrison 04-23-2014 08:23 PM

Jeff, yes, thanks for reminding me of the obvious -- I suppose some folks get tired of me ringing the infection bell. But it's often the cause of implant failures.

Lauren, unfortunately, most spine doctors will tell you that they know what a biofilm is, but the reality is that they don't have the diagnostic equipment, expertise, methods, time (or even interest) to test implants for biofilms that contribute to failures. Some may say, "yeah, we can have it cultured." And that's the wrong answer -- testing a device for failure is more involved than that.

That's why earlier in the topic I asked about the experience of your surgeon. It's super-important that your surgeon has done a significant number of these revisions -- can you tell me how many? Though your situation seems dire, I would be wary if he did less than "X." What that number should be is often debated; but if it's less than 20 or 30 I would be concerned. If it is, pls PM me and let me know...maybe I can help.

Discinterested 04-23-2014 08:38 PM

Harrison, that failed Neodisc is indeed terrible. It does though have hallmarks of being caused by an infection, and may not have been a fault of the disc itself. I recall reading about the failure of a metal disc on this forum that failed in a similar way, where the bone rotted away and it was found to be caused by an infection of the surgical site with the Staph bacteria. Well the neodisc was withdrawn from the market and there will have been reasons. I regret suggesting the Neodisc for what it is worth because I failed to research the latest and Lauren deserves better than that half-heartedness. My point, or one of them was that there are discs that have a fixing which in Laurens case might give some peace of mind about the same thing not happening again.

Lauren I understand your decision. Your previous fusions have proven to have worked well and so every reason to expect a good fusion from the revision and of course there will be no concerns about anything slipping forward again. I wish you the very best and please be very careful. Sorry to have gummed up your thread with junk posts. Personally, I think after a fright like this I would take the fusion and never look back at ADR. You know I would rather my own L4-S1 had a solid fusion than these apparent mickey mouse M6's. I think about them every time I lift anything, including my kids which I wouldn't have to do if they were fused. Yeah way to go Lauren and best wishes for the surgery.

drewrad 04-23-2014 09:40 PM

Brian, don't you think you'd also start to think about your adjacent level l3-l4 getting torn back eventually by fusing l4-s1 as a Mickey Mouse procedure than foresaking your mobility?

The younger you are, the more risk a fusion poses which is why I still voice my stubborn concern for Lauren getting bamboo spine of the neck at 36. Not to be mean, it's a tough spot, but I want to challenge the idea. There have been last minute fusion cancellations and switch to ADR.

Kelly4ADR 04-23-2014 11:38 PM

:)Lauren,

I hope you are at peace (as much as you can be) with your decision. Ultimately, you, your husband and your surgeon need to be comfortable with it. I'm sure anyone posting here has your best interests in mind when posting their opinions.

I'll be praying that you have a week of peace, and no anxiety or apprehension about your surgery. I'll pray that if this is not the right decision for you, that will be made very clear and I'll pray for a safe and successful surgery and outcome for you. Please keep us posted.

Rest in the fact that there are no absolutes in this decision, no right or wrong, since no one can tell the future or predict surgical outcomes. No matter how much clinical data is out there, there is only one "life of Lauren". No one can say do this or that, your life is unique as well as your situation. Only you know what fits for you. And many many many people do great with a cervical fusion.

Blessings :)

Discinterested 04-24-2014 05:28 AM

Quote:

Brian, don't you think you'd also start to think about your adjacent level l3-l4 getting torn back eventually by fusing l4-s1 as a Mickey Mouse procedure than foresaking your mobility?
My M6 disks look very small in my spine. I am tall with a large spine and the M6's look way too small. I do intend to start a thread at some point because I have a lot to say about them. I did think about the mobility issue and the stresses that a fusion would have done for the L3/4 which is why I did go for the ADR. I would not actually have gone for a fusion at the time but would have rather just suffered my dehydrated disks. But after the surgery and I saw the Xrays I just broke down as I was hoping to see a real textbook fit. They are not though. They look awful and are a mickey mouse effort for the size of my spine. The good thing is that if I get spondylotic bridging/autofusion I should end up with a very strong natural fusion as there is plenty of area around the perimeter of the disc for a strong fixing, as long as there is no bone wax. This is food for a long long discussion so please wait until i start my own thread. So I only wish they were fused because I think in my case the M6's are a poor fit and I am concerned about the quality of the bone, because the bone is softer towards the centre where the discs are. I have some issues with the design and testing of the M6 too.

If I was fused at L4 to S1 and required surgery later on at L3/4 I would have an ADR. If I did that and it slipped forward and I was lucky to still be alive I would have it fused.

Quote:

The younger you are, the more risk a fusion poses which is why I still voice my stubborn concern for Lauren getting bamboo spine of the neck at 36. Not to be mean, it's a tough spot, but I want to challenge the idea. There have been last minute fusion cancellations and switch to ADR.
There have been last minute fusion cancellations, but maybe not for a revision of a horrific failing of an ADR. The surgical site may have a lot of scar tissue, and perhaps even more if a replacement ADR was fitted, making a third revision extremely risky if it came about. I hope you do keep challenging the idea because I agree that if there was a good enough disk available that would not fail like this it might provide for a more active life. I feel I have taken a beating and can fight no more:). Perhaps the advice should be sought of an experienced pioneering surgeon, like Dr Luiz Pimenta.

laurenmiddleton1 04-24-2014 08:47 AM

I appreciate EVERYONE's opinion. That is why I post here. To learn things I may not know.


I want to thank everyone again for your well wishes and your advice!!! No matter which way we decide to go, you have all give me food for thought!!!!

:beer: THANK YOU!!!!!


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