Advice needed on cervical ADR decision
 

Hi,

My story is complicated and I would love to get some advice or opinions on overseas ADR.

I train and teach wresting and martial arts and injured my neck last December (12/2013). I have likely had a bad neck for a long time. MRI from that time revealed myelopathy and cord compression at c6/7 and some compression at c5/6 with foraminal narrowing. My symptoms were transient parasthesias in the feet and numbness in my left hand. I got several consultations with surgeons at the hospital for Special surgery in NYC and they all agreed with two level fusion or a hybrid mobi-c ADR/fusion (the head surgeon there had only done one two-level replacement with the Mobi-C.) I also consulted with Dr. bierstedt and Dr. clavel at the time and they both agreed on two level ADR with the M6. I even met with Dr. Beirstedt in NYC in January and felt him and his crew were very knowledgeable, and that if I were to do the surgery, it would be with them. However, I decided at the time not to have surgery. After 3 months the symptoms subsided and I continued training with caution.

I was fine until this past September when things got bad again. After attempting to lift weights and do gymnastics, the grip in both my hands started to give out. A day or two later I was getting parasthesias again all over my body, including burning in my right forearm and fingertips. I saw my doctor and another MRI was ordered which revealed that the problem in my neck was unchanged, in fact, c5/6 may have gotten worse. Few weeks later, I started getting chronic headaches that came everyday. I have been getting them for about two months now.

I tried contacting Malte in September and setting up the surgery, but for some reason he did not respond after 2 weeks of emails. So I called the Canadian rep, Ken, who is very nice, and he said to resend the emails and copy him on it. My emails included a few questions, information about my new MRI, and a request to speak again with Dr. bierstedt either by phone or email. There was still no reply from Malte. A week later I follow up with Ken and he said to resend again and Malte finally replied but to an older email that didn't have all the questions. No chance to speak with Dr. bierstedt was offered. The communication has been very frustrating. On top of this, I had recommended a friend of mine in Georgia to contact them for his back surgery around the same time - he had the same problem: it took several multiple attempts and over a month for a reply. Needless to say, this does not inspire me with confidence. They don't even have my money yet and it's that hard to get in touch with them? I did not have this problem with them with communication back in January of 2013. I had heard about them losing a patient last spring due to the patient lying about his drug history, but I don't know the full details. Maybe it had an effect on the program? Something changed and communication is now very poor.

So, I consulted with two other overseas surgeons: Dr. Peter Hamlyn out of London (he did my friends 2-level cervical M6's 4 years ago, and he has been able to train and compete in high-level martial arts completion again) and I also consulted with Dr. Clavel. Here are the opinions:

Six US orthopedic surgeons and one neurosurgeon said to do a two level fusion. One US neurosurgeon said to do a one level fusion or replacement at only c6/7.

Dr Hamlyn out of London only received my recent MRI out of some staff error (it's a poor quality image), and based on that, recommended a one level ADR with the M6 at c6/7. He didn't think c5/6 was necessary based on the MRI.

Dr. Clavel said pretty much what everyone else said: two levels were necessary and he told me that even my posterior ligament was enlarged and contributing to my problem. He wouldn't even do one level, only two.

My experience with staff communication and skyping with both Dr. Hamlyn and Dr. Clavel were excellent. I had to pay, but I have no problem with that as they took 45 minutes of their time and did not rush me at all.

So, I have decided on getting the surgery and would like to get it done before the new year. My options are Dr. Hamlyn, Dr. Bierstedt or Dr. Clavel.

Dr. Hamlyn is great and I have another skype appt with him to go over the second MRI he didn't get (staff error), however, the system there with the NHS is not really set up for US citizens. They couldn't exactly tell me how much it would cost, only a ballpark figure, close to the price of the others in Europe, and said I would get 3 separate bills. Also, he said one level, which is confusing, since the majority of surgeons say two levels.

Dr. Beirstedt seems extremely knowledgeable, I like him, and think he's very skilled because people have had good outcomes overall from what I see on here. However, communication is poor, even post-op from what I have read on here. This I don't like. If I have an issue and need to ask a question, I would like to have access to speak with him either via phone or skype, even if it costs money. I have no problem with paying for his time and would expect to. However, reading about other peoples experiences on here, it doesn't seem like it's an option. I would rather not have to relay everything through Malte who didn't even answer my emails until after 3 weeks and several attempts. Also, the issue there last spring that I heard about worries me, but I don't know the full details.

Dr. Clavel is a really great guy. Wonderful personality and also seems extremely knowledgeable and skilled. I have heard people also have good outcomes. Dr. Clavel spent time with me via skype, answered all my questions, was very nice and informative, and communication with his staff is good. However, someone mentioned the outcomes not being as good as of recently, (someone said it on a thread here). Also, while Germany has an outstanding reputation for medical technology and surgery, I am unfamiliar with Spain and haven't heard anything about their hospitals, etc.

Any thoughts?

I'm not trying to throw more confusing choices into the mix for you but my surgeon is here in the states and he has performed many 2 level ADRs.

I'm scheduled to get a two level cervical with the mobi-c in January, 35k.

He is a martial artist as well ;)

Dr. Richard Wohns, MD . His clinic name is Neospine and he is in WA.

Hi Kelly,

Good luck with your surgery and thank you for the recommendation. With the profession I have, I believe the best option for me is the M6 disc. I don't know anybody with a mobi-c who is training in my art. My friend who had it done in London 4 years ago is able to compete at the highest level with his two cervical m6's with no problem - so I use that as a model for what the m6 can do. Also, the doctors I spoke with who are familiar with both discs said the M6 is a better option, even one who couldn't do the surgery and had nothing to gain from telling me that - one of the surgeons at hospital for special surgery in NYC who is involved in the M6 FDA trials (which I don't qualify for) told me honestly over the phone that the M6 is "far stronger" than the mobi-c. Hence, I have ruled out the US as an option.

It sounds like you have done your research, that is good! Good luck!

Antifragile,
It seems like you also did your research, like me. I had been to 8 neurosurgeons in the U.S. and 9 in Europe. The opinions varied a great deal more as I was dealing with 3 levels. I ultimately narrowed it down to Dr. Bierstedt and Dr. Clavel. I had Skype calls with each of them twice.

I was comfortable with both and chose Dr. Bierstedt but feel confident that my outcome with Dr. Clavel would have been equally as good. You really can't go wrong with the professionals with that level of experience. I have not heard of the incident you referred to in Germany but I was able to set up paid Skype with both docs. These "face-to-face" meetings really helped me gain confidence with them.

I did not have problems in obtaining responses in late Spring this year and turnaround time was fine. I found connecting directly with Spain & Germany proved useful rather than going through an intermediary like Ken. For clinical questions, Ken cannot help. I also used an internet phone like magicjack or Skype to be quite reasonable to make calls and speak with someone directly. Malte does pick up his phone (if you allow for time difference) and many of my emails requested Dr. Bierstedt to weigh in. I obtained some emails in German from Bierstedt that I translated using Google to check what Malte told me.

It is all very do-able. The rehab in Germany is also great. You regain a lot before you return to the U.S. Feel free to pm me if you like and good luck with your decision. Once you make it, you will feel a lot better that you are moving forward.

Still not getting good communication with Germany. Waiting on hearing back from Malte again.

Dr. Clavel said it's ok to stay in Spain only 8 days after the surgery (potentially December 15th) and fly out on the 23rd to be back home for Christmas. I don't want to feel like I'm rushing it. How long did other cervical patients on here stay in Europe after the surgery? Can I drive?

Also, discussing the options of using bone wax or not. Apparently Dr. Clavel uses it, but Dr. Hamlyn and bierstedt do not. With my history of staph infections, Dr. Clavel said he may not use it. I'm afraid of him altering his normal procedure. But I'm wondering, are there other techniques that need to be done instead if he doesn't use it?

Very confused.

Folks here know that I am biased against going overseas for surgeries for a litany of reasons. These are but a few below (sorry, I hope it helps).

Professional: My research is unusual, in that I have access to patient outcomes and researchers that have also analyzed and written about the perils of medical tourism. From 2005-2010, I spoke to patients whose lives were ruined by surgeons from Stenum; Malte Peterson in particular. He still has his web goons deploy propaganda all over the internet to manage the PR nightmares, see one of many examples of this judo in action: Stenum Nightmare – The Truth | Disc Replacement Nation

Personal: the sales reps that worked for Stenum (including working for the doctor you seem convinced is the right one) hijacked this web site -- to collect sales leads -- patients. If you have surgery overseas, and have complications, you are (almost) completely screwed because of the way German laws are written to protect doctors – particularly surgeons.

But botched surgeries are not limited to Germany, it happens in every country I am sorry to say. In general outcomes seem to be getting better. But at the same time, more and more patients with "sub-clinical" problems (the causes of degenerative diseases) are getting surgery. And that is a growing problem.

Luckily, most patients with experienced overseas’ surgeons recover nicely. But certain laws, especially in Deutschland, leave you NO chances of suing for damages or getting your surgery fixed. Getting complications repaired is iffy; the process involves begging and often requires additional money. It all depends on who is driving the process: the surgeon or the sales rep. Rarely, the patient is in charge and the surgeons know that.

Even if it was paid for -- do you really want to hop on a plane -- in pain -- and fly back to see the surgeon that compromised your health in the first place? That's the last thing a person in pain needs to reconcile.

The Prodisc and Mobi C are a simpler design with less materials and parts. The Mobi C implant process involves less bone loss -- which is key to reducing blood loss, minimizing heterotopic ossification and healing. Stated differently, cutting a huge keel through the vertebral body weakens it structurally and immunologically, so please be careful about the erroneous assumptions you are making about some rather complex spinal kinematics – that some doctor almost made for you:

“…one of the surgeons at hospital for special surgery in NYC who is involved in the M6 FDA trials (which I don't qualify for) told me honestly over the phone that the M6 is "far stronger" than the mobi-c….”

OK, I am all ears. What the hell does this mean? It’s based on a subjective opinion, right?! :eek2:

With so many US clinics doing the Mobi C, even for two level, I think it’s crazy you want to fly overseas. Here’s a bit more on the LDR device:

Mobi-C

Finally, please create a signature:

https://www.adrsupport.org/forums/f5...-health-11053/

Again, hope this helps. It’s just my opinion and nothing else. :look:

PS: Of course, all members have access to patient outcomes too in the post-op forum.

Hi Harrison,

I really appreciate your opinion and advice. However, based on my experience in the US and the profession/sport I need to continue, I feel I would be crazy not to go overseas for ADR.

Due to my profession, 2-level fusion is not an ideal option. I teach Brazilian Jiu-Jitsu for a living. I need to be able to return to teaching and participating in a sport where an opponent pulling and pushing on the head and getting caught in chokes and headlocks is normal on a daily basis. How do I know the M6 can handle this? Do a Google search for a gentleman named Braulio Estima. Braulio is a good friend of mine and quite literally one of the best athletes in the world in the sport of Brazilian Jiu-Jitsu. Braulio had two cervical M6's placed in his neck at c4/5 and c5/6 around 2010 in the UK (where he lives). Since then, he has won the European, World, and Pan American Jiu-Jitsu Championships, as well as many world-level grappling tournaments and also competed in MMA. He trains in the same art as myself every day and experiences the same physical stresses I put myself though. It's been about four years and his M6's have held up perfectly thus far to this super-normal usage and he experiences no problems from the implants at all. Everyone I have spoken to in my sport who had two level fusion has said that they are not as functional as they were before the surgery, and have experienced problems due to the stresses from training with the fusion. Due to this, I have used Braulio as a model for what the M6 is capable of and how it will stand up to the rigors of my sport with it's very specific physical demands. I have no such proof or model to follow with the Mobi-C. Hence, I feel the M6 is my best option.

My experience here in the US has been very frustrating thus far. I have consulted with many spine and neurosurgeons, including four top spine surgeons at the Hospital for Special Surgery in NYC - two of whom are in the M6 trials. As you probably know, the Hospital for Special Surgery (HSS) is an "elite" hospital that is among the best in the US, especially for orthopedic surgery. All four HSS doctors have offered fusion or a hybrid ADR. The first doctor at HSS told me he had done "one" two-level Mobi-C replacement and that my insurance wouldn't cover it anyway. The second doctor told me he didn't believe in ADR and that fusion was best, stating that the artificial discs would probably "pop out" if I did sports with them in. The third doctor was in the M6 trials, but didn't accept insurance. He said he could do a hybrid Mobi-C/fusion, however he said he had done thousands of fusions, but less than a dozen Mobi-C disc replacements. He had only placed the M6 in dogs, never in humans. The last HSS doctor was also part of the M6 trials and had placed a few of them. He was quite familiar with the Mobi-C and the M6 and said he would do some specific research on how the discs would handle in athletes and call me back, which he did. It was in the phone conversation that he said the M6 was "far stronger" than the Mobi-C in terms of the mechanical stresses it can handle. The mechanical testing data from both companies seems to confirm this:

Mobi-C: from the LDR website
http://us.ldr.com/Portals/1/MECHTESTtwolevel.pdf

The Mobi-C resisted 497 Newtons of sheer force before it failed mechanically.

M6: Spine Surgery London has the data
M6-C artificial disc information

The M6-c resisted roughly 6,700 Newtons of sheer force before it failed mechanically.

Other directional load tests from the same sources show the M6 to be far stronger.

Now, I do understand that each company has different testing machinery, different methods, different measuring devices, etc. and that the various methods of testing are not exactly alike, but even accounting for that would not show such differences in results. The respective numbers of what each device can take are not even close. I also understand that these numbers are supposed to be stronger than a normal human disc, but I want the strongest mechanical option possible with my profession and sport.

Hence, after all my research, I feel the M6 in Europe is my best option.

As for Germany, that is some valuable advice regarding the laws. I met Malte back in February and he seems like a nice guy, but I have been disappointed with communication. I believe Dr. Bierstedt to be excellent, but because of the poor communication with Malte, I have been leaning towards Dr. Hamlyn in the UK or Dr. Clavel in Spain. Both Dr. Clavel and Dr. Hamlyn skyped with me individually and they were excellent - both coming to the same conclusion. However, the UK option is not set up for medical tourism, so the cost estimate is not clear and there is no coverage for a revision or longer stay in the hospital. It would seem that Dr. Clavel is the best option.

I had a multi-level ADR using the Mobi-C on October 20th. So far no problems whatsoever and a U.S. Surgeon performed the surgery and is currently doing trials on the M6. I just don't understand why some people fly all the way over to Europe to get the procedure done when it is right here in our country and my insurance paid 100 % of it after three appeals. I saved myself 80K and just don't understand. However, its your choice and that is all that matters.

We too were biased against going to Europe. You would be crazy to not be! But at the end of the day we wanted to have someone with the professional edge and selected Dr. Clavel.

First of all, as a professional pilot, I can tell you that the riskiest pilots are the ones that know how to operate the airplane, but lack experience in its peculiarities and seasoning in the cockpit. We call these guys "High Mins" Captains - they are allowed to fly the line, but are not allowed to fly in challenging conditions. So when the weather is bad, the company substitutes a more experienced guy for the flight.

Like pilots, we found that many of the highly regarded US surgeons whose names are often tossed about on this forum are still "High Mins" surgeons. They can do the procedure well with exceptional outcomes. But if you exhibit a clinically challenging diagnosis, they will revert to recommend a fusion or hybrid just as Antifragile has experienced. Call it CYA or whatever, but it is really frustrating to get your hopes up, and then have them quickly dashed when they so NO and push for the fusion.

Our experience was that Dr. Clavel felt that he had a 95% chance of getting it done, but told us he would have the fusion device at the ready. We asked him why the US doctors didn't approach it the same way, and he suggested they likely didn't feel comfortable with de-compression at the C6/C7 due to the advanced stage of my wife's condition.

As for the Mobi-C vs M6, we preferred the constrained design of the M6 over the unconstrained design of the Mobi-C, but at the end of the day, the Mobi-C was OK for us and we were prepared to have the Mobi-C. However, since we could not find a US Surgeon who gave us any confidence they would do the procedure the Mobi-C was not an option. On the other hand, Dr. Clavel has a lot of experience with the M6. In addition, there have been over 32,000 of these devices implanted so far so it is not something new.

Finally while some get reimbursed by insurance (Congratulations! You're in the minority of the minority), most that require a multi-level do not. As one of the seven doctors we talked to here in the US said to us, "your insurance won't cover it, so why talk about something you can't have."

I believe that once the insurance issue is resolved, multi-level ADR will become more common, and the issues of experience and seasoning for US Surgeons will go away. Until then, this problem will persist.

Overall, so far, we believe the decision to go to Europe was the best decision we could make given the information we had at our disposal at that time. We are happy with Dr. Clavel and the professional staff in Barcelona, but only time will tell.

TJ

I have been absolutely thrilled with Dr Clavel. Coming up on 5 month mark. The actual worked on area is the least of my problems. I'm old, and Dr Clavel MRI'd my entire spine. I have crappy discs all over the place. Talk about multilevel! But my bottom 3 worked on areas are great now! I can sit at the dinner table, drive a car etc.

I just need to learn to slow down which is hard for me. The MRIs showed some cervical stuff to be aware of as well as a few ugly thoracics which do cause issues if I swim too much so now I'm thinking I just need to take her easy. Walking is fantastic though. Still do machine weights but I'm not doing MMA, too much of a chickenshart for that.

Docs here at Kaiser were going to consign me to a life of pain management drugs and PT. Pffffft.

I chose to live life abundantly instead and decided to turn into the punch head on. Glad I did. When I see my lumbar before it just sends shivers looking at it.

Call me if anyone needs help in making a decision, but I admit I'm biased in leaving this banana republic behind.

And anti fragile, I like your style. You should talk to Frank. He went to Clavel also and rolled his jitz mats out again a few months ago. And is rolling on em again. He's a four level, neck and lumbar.

And Throttle, can I see your wife's pre/postop? I really want to see that reversal of curve re established by El Maestro.

So Dr. Bierstedt called me today and we spoke for about 35 minutes on my condition. He apologize about my not hearing from Malte but said that they are swamped and very busy. The good news is that both Dr Bierstedt and Clavel agree on my condition and recommend the same thing. What I wasn't clear on was what ligament/s are removed, because Dr. Clavel mentioned my posterior ligament being enlarged.

Colorado Babe,

Throttlejockey explained iit well and had a similar experience as I did here. You're lucky in that you found a wonderful doctor here in the states. However, if you read my initial post and my reply to Harrison, I've already explained in detail why my options in the US are not ideal, including my experiences with doctors, as well as why I would rather have the M6 over the Mobi-C. On top of that, I discussed the Mobi-C with Dr. Bierstedt today and he said that he and his other surgeons are not "married" to the M6, they can use whatever device they choose, but in his experience the M6 is a better, stronger disc and the only one that has undergone 30,000,000 cycles.

Drewrad,

You train MMA? I would like to get in touch with Frank if he does BJJ. What did he have done?

In my follow up appointment with Dr. Cappuccino(Buffalo, NY) yesterday(see my thread) the doctor and I discussed cervical discs because I also have some cervical issues that may have to be addressed at some point. He has been using the mobi-c and recently performed a 2 level with it. He said that it was his opinion that anyone that could wait for the M6 to be cleared by the fda should wait. He did not give me specifics but said based on research and data that he has seen he feels the M6 is superior especially in multi level situations. Dr. Cappuccino has also been involved in research and development of spinal products.

Antifragile,

Isn't it a challenge to decide which is the best course? The trouble is that you likely won't know for years down the road if the decision you made was the right one.

Anyway, you've been given great points all the way around and a lot to consider. I think that either way you go, Mobi-C or M6, both are great 2nd and 3rd generation devices. BTW: the trauma required to deliver 497 newtons of sheer stress to your cervical spine will likely leave you dead or paralyzed; so I wouldn't worry about that being the limit of the Mobi-C. As you've probably discovered, more important than the device is finding a gentleman that has a long and successful track record with that device.

I wouldn't trade my pair of M6-C's. I've had them five years last week. Had the Mobi-C been available in the US and covered by my insurance when I needed it, I would have gone with that one. Either way is a good decision. Find the right surgeon.

You're going about the process the right way.

Good luck, Jeff

I should note that Dr. Cappuccino also said that if you do need surgery now that he feels the mobi-c at least gives him an option in this country that he feels is a good one. He was never a fan of the Pro-disc and used to prefer to use the kina-flex in Cyprus thru AIMISS before the Mobi-c was approved here.
On another note, he conveyed some interesting feedback from a meeting he recently had with 2 local insurance companies regarding persuading them to pay for adr over fusion. He said that presenting some new data on must-level fusion showing that there was only an 8% success rate! They agreed that adr made more sense but said that they do not want to start approving because they fear that more people will opt for surgery if there is a better option!

There is so much wrong with these two statements that it's hard to know where to start. While I appreciate the fact that the medical insurance industry is a for-profit business, the last statement is outrageous.

Other than this great board the general public seldom hears about post op spinal problems. My wife is near three years out from a lumbar fusion. The pain is starting to come back, what's that I hear about adjacent disc breakdown?

Sincerest condolences. What's the plan?

Very interesting. after my experiences and reading the experiences of others, I feel better about having it done overseas.

There's an opening for surgery with Dr Clavel on Dec 15th (one week away) and if I take it, I would have to make all the arrangements now and rush to get everything done. On the upside, I would get the surgery over with before the holidays, and get on with my life sooner.

On the downside, I'm confused about the procedure and the different opinions I got. I had a bit of a different opinion recently when I spoke with Dr. Bierstedt by phone a few days ago. Apparently, Dr. Bierstedt was going to partially remove the annulus (it's torn) but leave the posterior ligament in tact. From what I was told by Dr. Clavel, my posterior ligament is enlarged and he wants to remove part if it. I feel like I am well out of my expertise here, but I would like to know why the difference of opinion. Of course, I would rather not cut a ligament if I don't absolutely have to.

If I don't get it done with Dr. Clavel on dec 15th, he has January dates available, and so does dr Bierstedt. I'm not sure what to do.

Thoughts?

Antifragile,

I don't know what you should do, but I know what you shouldn't do; go into a European surgery without knowing all of the options and opinions. Example: you need to understand the problems that ossification of the PLL cause, what happens if you leave the ossification and what does it mean for your future if you remove the effected segment of the PLL.

You are liable to discover that the opinions are just different; not necessarily right or wrong. I don't know.

I do know that thickening of the PLL will cause compression of the spinal cord. I don't know if that thickening can be arrested surgically, if the PLL can be debrided, or if it can only be removed.

That's not definitive, but I hope it's helpful.

Good luck!

If the PLL is calcified it is like having a stretched out rubber band without any of its former elasticity meaning it doesn't provide any vertical stability any longer but could cause problems with compression. Sometimes they look healthy, sometimes they do not. Everyone is different. I would let the doc make the decision once in there to see its overall health by getting an actual visual.

I know Bergnatoli actually dissects the ALL and inserts the Prodsic through it then sews it back up.

Thanks for the replies. I've decided to research both doctors further and have my surgery after the holidays.

I wish there were a graph or list of the cervical and lumbar successes for both Bierstedt and Clavel. I have been searching it through the surgical outcomes forum, but finding the threads and sifting through the stories is a lot of research.

Does anyone know which doctor has better cevical outcomes (fewer revisions or complications after recovery)?

Again, still haven't heard from Malte after sending his an email with questions over a week ago. Dr. Clavel gets back to me within one day. Communication is obviously a big factor for comfort and peace of mind, but I am more interested in successful outcome numbers.

jss, there is no plan. There are no options up here. Perhaps a spinal nerve block, worked for me for about a month.

Hello all,

Just an update: I have not had my surgery yet. I had planned on having it done with Dr. Bierstedt, but due to a serious family situation, had to cancel it. I was getting ready to reschedule, but I recently heard about a blood spinning procedure called Regenokine (used to be called orthokine). Dr. Peter Wehling in Germany invented it, and many professional athletes have had it done like Kobe Bryant, etc. it's suppsed to be 150-300x more powerful than PRP. They take your blood, spin it, hear it, and inject it back in. Your blood then becomes a powerful anti inflammatory that blocks interleukin 1. It can heal herniated discs.

Two doctors now offer it here in the US, one in NYC and one in LA. I spoke with Dr. Wehling in Germany, as well as the guys who offer it here in Ny and LA and opinions were slightly different. Dr. Wehling suggested I do ADR surgery because my spinal cord is compressed. He said there was a 60% chance that Regenokine could heal me without surgery and resorb my disc extrusions at c5/6 and c6/7. The Dr in Ny suggested trying Regenokine first, but didn't give me details as of how successful it might be, but said it could take a year to heal fully. The Dr in La though I should try Regenokine first - he was very helpful and answers lots of email questions. He said I may see resorption in only 6-8 weeks and it would be ok to give the Regenokine 3 months to work. If not, I could have the ADR surgery after if o wanted and that I would heal faster if I did the Regenokine first. Regenokine costs $15,000 and is not covered by insurance. The doctors in here use fluoroscope guidance, and the doctor in Germany does not, hence why their opinions may be different.

Here are the options:

Regenokine first in LA: (I'm in Ny, but I liked the doctor there better).
Im told it may have a positive effect on my autoimmune disease as its a powerful anti inflammatory. The effects last 2-7 years. It will have a positive effect on all levels of my neck, but IF the disc resorbs (60% chance) it will not be as strong as a healthy disc or the M6. It could also help my headaches which no one is sure is ring caused by the cord compression (some doctors say the headaches are unrelated, Dr. Bierstwdt and clavel say the headaches ARE related to the cord compression as its a common occurrence) If it doesn't work, I'm out $15,000, and my life is on hold longer. I need to get back to teaching and training Jiu-Jitsu 100%. If I wind up needing both Regenokine and adr, I'll have a healthy neck, but will be close to $70,000 in debt after costs of procedures and travel. This will affect my business and other areas of my life. The positives are that it may help me avoid surgery (although I'm not so sure) and I will know I tried something less invasive first and am told I will heal faster from surgery should I get it months later.

Surgery first in Germany: $40,000. Higher chance of success and stronger end result, but more invasive. Will decompress my cord and get me back to training in 3-6 months. Downside is that I'm worried it may not help headaches, it won't address the small hernias on higher levels (c2/3 and c3/4 which I dont know if they're related to headaches). It's also a permanent option and it doesn't sit well with me if I didn't try the less invasive thing first, especially if it doesn't go well. My rheumatologist doesn't like the idea of getting Regenokine injections in the neck after ADR as he says it may introduce bacteria near the implants. The Regenokine dr in las says it's not an issue.

I'm in confusion limbo and hell. The whole decision is giving me lots of stress. Meanwhile I can't train and need to get on with my life.

What do you all think?

Thanks,

-Carl

My pea brain says that you'd need a convincing argument that your autoimmune disease led to or increased the weakness of your disks if you're going to have a chance of Regenokine reducing your need for surgery. I tend to be a big proponent of the biological repairs but I really need a solid premise for an underlying mechanism before I'm willing to trust them to fix a problem. In the absence of that explanation, I'd suggest that you look at this as two separate but related problems. You have an autoimmune disease that's likely exacerbated when you're in pain. You have weakened disks and cord compression and the pain and disability they cause is enhanced when your autoimmune disease fires up.

If you split those up and address them separately, then you can ask addressing which improves your condition the most, the fastest, the most certain, and the cheapest (up to you to rank which factor is most important).

Side note, Laura gets prolotherapy injections into the C-spine region semi-regularly to deal with the mobility of the Prodisc-C implants. If an injectionist can't figure out how to establish a sterile area to give you injections near your implants, you really need to find a new injectionist. You rhematologist is being careful but a bit too cautious in my opinion. That risk is real but manageable.

Great Information
 

I just wanted to see if you have been tested for the Radio Frequency Ablation of the facet joints? (also called Facet Rhizotomy.)

I have had six minimally invasive spinal surgeries with four of them cervical to get rid of the horrible non-stop headaches that sometimes turn into migraines and two thoracic to try to correct the problems I have with my legs (I think the problem is cervical but, that's another story.) Finally, in 2013 after 7 years of suffering, a Pain Specialist tested me for the above procedure and in the middle of a level 10 pain headache it magically faded away in one second. OMG HEAVEN ON EARTH! The procedures only last about 10 months for me (had each side done separately) before the headaches returned because the nerves grow back but, it allows me to THINK again and at least function. I just finished two more procedures a week ago. Message me if you want to know more.

FYI, I just this week started emailing with Malte Petersen and have not had any issues as of yet. They now have my complete package. Dr. Clavel is also on my list of doctors to contact. I see Dr. Porter at the Barrow Institute on the 23rd so, that will be my first U.S. surgeon on this round. I'm waiting to find out what these surgeons think of my prognosis so, can't say much about that but, last time the surgeons locally all wanted to do a two level fusion on my neck and I declined. Last round of surgeries went from 2006 - 2010 but, I never improved that much from the minimally invasive surgeries (total cost excluding insurance premiums was about $30,000.). I traveled from Phoenix to Pittsburgh for those surgeries and I did not know anything about ADR at the time. I've got 9 years into this journey and am really desperately hoping that either Dr. Bierstedt or Dr. Porter have the answers because I'm really in bad shape right now and it came on really fast over the last three months. If I can hang in there, I'll contact Dr. Clavel and get him my package as well.

I already know I'll have to appeal my insurance and wait to try and get the Mobi-C with no guarantee they will approve a two level surgery. I'm not in your profession so, either the Mobi-C or the M6-C would probably be fine for me but, I'm really leaning towards the M6-C. It makes sense to me to have a game plan that does not involve waiting even if it does break the bank. Quality of life is more important than preserving cash for later. My point of all this is that surgeries done in the U.S. can also not work so, I think it's always going to be a bit of a gamble anywhere you have it done. I would not go back to my old surgeon in the U.S. at this point. For me, picking a great surgeon is the most important part of the equation. I missed the mark the first time at least for me but, he had some very good reviews from others including a professional wrestler.

Thanks so much for all the information you have shared! Sorry for the long post but, hopefully you found some useful information in it. This is a very good thread. Be well!

Cynlite, you sound like me!! I had two foraminotomies at level C6/C7, once in 2008 on the left side and once in 2013 on the right side. They were effective for a period of time, but IMO, not a permanent fix. I have levels (C3 through C5) fused. At C5/C6, there is a full-fledged herniation, which two years ago was only a bulge. My surgeon at the time said a bulge was "no big deal". Most adults have one somewhere in their spinal cord. However this is a level susceptible to adjacent segment disease (ASD) with the fusion right above it. Also, I have foraminal narrowing at C6/C7, the level at which I had two foraminotomies. I'm now being told to get a CT Scan there. That will help determine where the foraminal narrowing is coming from. It could be that the disc is herniated again or it could be the result of bone spurs. Since I have a titanium plate inside me from the fusion, an MRI doesn't show the best image at that level, but a CT Scan would.

My hope is to get two-level ADR in the U.S. covered at least partially by insurance. For some ridiculous reason, insurance companies often don't cover ADR at levels adjacent to a fusion. That is the dumbest thing I have ever heard, because, in my personal opinion (based on what doctors have told me) that is the most important level to get taken care of, because it stops the domino effect of ASD. I spoke to an ADR surgeon in the U.S this week and asked him why this was the case. He told me that insurance companies are in the business of making money and not necessarily interested in what's in the best interest of the patient. Furthermore, many companies hold on to certain FDA guidelines as long as possible. Up until a year or so ago, the FDA did not approve use of an artificial disc at adjacent levels to a fusion. This has since changed, but some insurance companies try to use this as a reason not to cover someone like me as long as possible.

My thoughts are if I don't get approved for two-level, perhaps they can do ADR at C6/C7, which is giving me the most symptoms and is not adjacent to a level of fusion. Then I can consider something else later. Perhaps insurance companies will relax that rule and eventually I could get ADR at C5/C6. Another thought, while not recommended, might be to get a fusion at C5/C6. I would now have three levels fused C3/C6 but the AJS would end there because I would have an artificial disc at C6/C7.

The bottom line is I'm going to do what's right for me. I'm not going to let the insurance companies dictate my procedure (as nice as it would be for them to cover it). I'm looking at ADR surgeons in the U.S. first, but I'm also putting some feelers out to those in Europe.

Gene

Hi Annapurna,

I don't think the autoimmune disease caused
my problem, but having a beneficial effect on the systemic inflammation that is a part of it is a positive potential side effect of the Regenokine. I Regenokine costs less, helps my whole neck, is less invasivemay help my autoimmune slightly but may not be as strong and may not work - leading to a greater financial strain.

ADR is stronger, more certain, gets my cord decompressed faster, but may not help my other levels and is a permanent, more invasive procedure. Still unsure.


Cynlite, no, I have never had that procedure not been offered it because no one knows what's causing the headaches. I had nerve blocks done in the occipital region, but my headaches are in the eardrums, back of the head, and behind my eyeballs and inside corner of my eyes (like brain freeze.) Do you have cord compression?

No one knew what was causing my headaches either! I saw an ENT who told me the dizziness was not ear related. I had several thousand dollars worth of tests done at a balance center and they said it was not balance related. I was told I had Occipital Neuralgia by the first Neurologist but, the neurosurgeon who operated on me said I did not so, he never did surgery for it. I believe Occipital Neuralgia is usually at the C2-C3 level and my MRI is fine at that level.

My headaches were in the back of my head initially and behind my eyes mostly right sided. It then developed into a dizziness where I had to hold onto the walls to walk. After my first surgery at C5-C6 which included a cord decompression, my headaches were still there. The dizziness went away. Prior to the surgery, my right eye would twitch for short periods of time (longest was one day) and that went away as well. After the four neck surgeries, the headaches went away for a few years but, then came back. The headaches then expanded their scope to sometimes include migraines that made me light and sound sensitive and caused nausea. The headaches never affected my ears that I recall.

When they came back in December 2014, I can't tell you how incapacitating they were. I just had the second procedure so, for three months I have been really suffering with at times feeling like the pressure in my head would make it explode and I periodically got strange stabbing feelings in my eyeballs. Well, the procedures seemed to have worked again. I'm still healing from them but, I expect to be much better in a week. The drugs and the procedure always cause me to feel ill and give me horrible muscle spasms but, eventually that all heals and the damn headaches are gone. My neck still hurts but, at least I can think again. I hope this detail helps.

I recommend finding a rock star Pain Specialist to include in your team of doctors! I went through four Pain Specialists before finding the one who diagnosed and treated my headaches....thank God!

I'm sorry to hear you had so much pain. It amazes me that the cause of these neck-related headaches can't be found. I started suspecting they may be caused by trigger-points in the neck muscles referring pain into head.

"I started suspecting they may be caused by trigger-points in the neck muscles referring pain into head.

This is so true! It's really hard to pin down what causes the headaches but the trigger points do have something to do with it some of the time. I just scheduled an appointment with my Pain Specialist to now jab me with needles in the Thoracic area of my back to try and release the spasms. I know from seeing a neuromuscular massage therapist in the past that there is a point in my mid-back that when she got it to release, she also got the headaches to go away temporarily. Sadly, fighting the muscle spasms is an ongoing war. I am hopeful that the ADR surgery will fix all the interrelated issues. Until then, I go through my check list of traction, working pressure points, hydration, needle work from pain specialist, deep breathing, and the radio frequency ablation of my facet joints and lastly drugs.

Did you move forward with the stem cell treatment?

Hope you are finding answers!

Another duplicate!

Weird! I waited over 10 minutes for my post to show up because it wasn't there. Now it is showing up as a duplicate. This is the deleted duplicate since I can't delete it!

what do you mean by
 

"Our experience was that Dr. Clavel felt that he had a 95% chance of getting it done, but told us he would have the fusion device at the ready. "

Looks like I may be getting the surgery in Germany after all. Does anyone recommend flying in at an earlier date to allow time to adjust for jet lag? If I'm having surgery on, say, the 10th, should I leave on the 7th or 6th to adjust? Germany is 6 hours ahead of me. I didn't k ow if 2 or 3 days was enough time.

If you can I would recommend getting in at least 3 day before. I say this because it gives you a buffer if any problems arise with flight delays and a chance for you to get settled and rested before a major surgery. I planned on arriving 4 days before but my connection was in Chicago, is there any need for me to keep explaining:) I was happy to have the 3 days we ended up getting. My wife and I took the train to Cologne one day and saw the Cathedral, Lindt chocolate factory, spent some tome along the shore of the rivers, and had a very nice lunch.
If you would like to contact me about specifics such as things your supporting partner can do and evening places to go the last few days if able besides Medicos shoot me a PM.

with all due respect
 

Harrison,

I understand your concern for medical care outside the US. I have been an US Army dependent wife; and I have had surgery in Panama Central America and Germany. My care in Germany was excellent. My doctors were not English or American. May be they don’t need malpractice there because they do it right the first time. Can you sight anyone that has been paralyzed or died here from having seen either Bierstadt or Clavel?
You also forget; there are those of us here on this site that have prior fusion and need more than two levels done, so no option here in the US. I don’t want a Mobi-c that is going to cause more adjacent level stress. I need the most shock absorption I can get.
I recently had a US doctor want to put a Bryan under my fusion, remove my plate and screws, possibly takedown the fusion at my C 5/6 just to get to a bone spur, and said he would check the PEEK cage at C ¾ to see if it was loose from not having fused. WOW! Doctors here that are that aggressive may have need for malpractice because that surgery would be very risky!
Let us not forget also that doctors here only sell what they are trained to do, or will be paid for by the insurance companies. What happened to “the Patient Bill of Rights”? Why didn’t my US surgeon tell me that there were other options rather than fusion? I could have had a 2 level ADR back in 2008. Now I am sitting here with this domino affect……………………………….
So I will go to Germany or Spain. Thank you very much!

Cheryl,

Well said. My previous US doctors NEVER mentioned ADR. They also NEVER educated me the sightest about DDD, until it got too late. I honstly believe some of them want you to get worse.

me too
 

I have sent two email this poast week to Malte without reply and one to Kelli. I hear back from BCN rwithin 24 hours. Dr. Clavel gave the best assessment thus far. He caught something the other did not. It's more money, but my health and out come is worth it!

I figure I'd better make am informed choice this time
 

Hi Romakis, People like us only have one more shot to get this right!