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  #1  
Old 11-23-2014, 10:41 PM
Antifragile Antifragile is offline
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Default 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?
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  #2  
Old 11-24-2014, 12:09 AM
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Kelly4ADR Kelly4ADR is offline
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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.
__________________
2004 MRI -cervical bone spur causing pain
2011 MRI -5 bulging discs at C3-7: Recommended C5-6 and C6-7 for a two level fusion, I said no thanks.
2014 MRI -progressive compression C5-7.
MRI 6/5/14- Ruptured L4-5, bulge at L2-3 and L5-S1 Dr recommends discectomy of L4-5 but won't do surgery until cervical is stable
8/2014- 8 months/3 rounds of appeals, Aetna denies 2 level cervical ADR
2 level ADR w/ mobi-c C5-7 Jan 7, 2015
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  #3  
Old 11-24-2014, 07:33 AM
Antifragile Antifragile is offline
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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.
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  #4  
Old 11-24-2014, 12:14 PM
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Kelly4ADR Kelly4ADR is offline
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It sounds like you have done your research, that is good! Good luck!


Quote:
Originally Posted by Antifragile View Post
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.
__________________
2004 MRI -cervical bone spur causing pain
2011 MRI -5 bulging discs at C3-7: Recommended C5-6 and C6-7 for a two level fusion, I said no thanks.
2014 MRI -progressive compression C5-7.
MRI 6/5/14- Ruptured L4-5, bulge at L2-3 and L5-S1 Dr recommends discectomy of L4-5 but won't do surgery until cervical is stable
8/2014- 8 months/3 rounds of appeals, Aetna denies 2 level cervical ADR
2 level ADR w/ mobi-c C5-7 Jan 7, 2015
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  #5  
Old 11-24-2014, 07:12 PM
Optimistic Optimistic is offline
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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.
__________________
1989 – herniated disc at L5-S1
1992 – L5-S1 broad bulging; right L5 nerve root compression; impingement on S1 root within spinal canal;
2006 – DDD L3-S1; disk bulge at L3-L4 and mild facet/ligmentous hypertrophy; L4-L5 large herniated disc; facet/ligmentous hypertrophy with stenosis; disc herniation & dessication at L5-S1;
2013/2014 – Dessication and significant disc height loss at L4-L5 & L5-S1; L3-L4 disc bulge with hypertrophy; mild spinal stenosis; Grade 1 anterolisthesis (3mm); L4-L5 - marginal spurring and moderate hypertrophy causing neuroforaminal narrowing; L5-S1 - moderate-severe neuroforaminal narrowing; lumbar lordosis is straightening.

New pains & functional limitations in late 2013 led to exploring ADR procedures. Consulted with 8 surgeons domestically and 9 in Europe.
May 2014 – Anterior and posterior incisions in a 5-hour surgery resulted in 2 M-6s and one facet joint prosthesis (dynamic stabilization system). On the road to full recovery.
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  #6  
Old 11-29-2014, 08:04 PM
Antifragile Antifragile is offline
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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.
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  #7  
Old 11-29-2014, 09:38 PM
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Harrison Harrison is offline
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Join Date: Oct 2004
Posts: 6,918
Question

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?!

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.

PS: Of course, all members have access to patient outcomes too in the post-op forum.
__________________
"Harrison" - info (at) adrsupport.org
Fell on my ***winter 2003, Canceled fusion April 6 2004
Reborn June 25th, 2004, L5-S1 ADR Charite in Boston
Founder & moderator of ADRSupport - 2004
Founder Arthroplasty Patient Foundation a 501(c)(3) - 2006
Creator & producer, Why Am I Still Sick? - 2012
Donate www.arthropatient.org/about/donate
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  #8  
Old 11-30-2014, 03:09 AM
Antifragile Antifragile is offline
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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.
__________________
12/5/13: Cord compression and myelopathy at c6/c7
As well as cord compression at c5/6 - few symptoms
9/4/14: slight progression in compression as well as chronic headaches.
11/28/14: seeking 2 level adr overseas
2015: Successfully received 2 M6c implants from Dr. Bierstedt
2017: No symptoms, neck is 100% and fully back to training!

Last edited by Antifragile; 11-30-2014 at 05:36 AM.
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  #9  
Old 11-30-2014, 04:01 PM
colorado babe's Avatar
colorado babe colorado babe is offline
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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.
__________________
1998- Injured neck and back in USAF
2011 - Started experiencing Severe Symptoms, Migranes, numbness, spasms in legs and feet and sciatica.
Feb 2014 - Received upper Lumbar Injection - Severe Allergy to injection
Mar 2014 - MRI of Cervical and Lumbar, protruding disc in C3-7, Herniated Disc in L5/S1, placed on STD and FMLA )
July 2014 - Stem Cell Procedure performed
Oct 20, 2014 - ADR (MOBI-C) at C5-7 and Anterior Fusion at L5/S1 by Dr. Pettine and Dr. Techy
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  #10  
Old 11-30-2014, 05:49 PM
Throttlejockey Throttlejockey is offline
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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
__________________
- Wife has been diagnosed with Severe Spinal Stenosis Right and Left Sides, Degenerative Disk Disease at C5/6 and C6/7, Large Osteophyte Complexes at a both levels, with C6/7 on R/H Side, and C5/6 both R/H and L/H Sides. Also Reverse Lordosis.
- Performed 2-Level ADR with M6-C by Dr. Clavel, Barcelona Spine Center on 10/15/14.

Last edited by Throttlejockey; 11-30-2014 at 08:15 PM.
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