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  #1  
Old 07-14-2016, 02:37 PM
RiverMiles RiverMiles is offline
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Join Date: Jul 2016
Posts: 19
Default Hi and hope to give back

Hello everyone.

Just joined but have been visiting for a while.
This site has been an indispensable resource for me so I thought my first post really ought to be a sincere "thank you" to all contributors, past and present - Thank you.

I hope something from my own ADR story can someday add to this great well of experience and knowledge.

Thanks again - John
__________________
Nov-Dec 2015 - 10 miles in the kayak, a N. GA mt summit, a 12-mile day-trek.
Late Dec '15-Mar '16 - Years of "normal" tension in my neck became radiculopathy w/ neuro deficits / Standard conservative treatments. / MRI reveals C5-C7 unpleasantness.
Apr 18th, 2016 - 2LVL ADR scheduled for May 3rd!.......Apr 29th, 2016 - Surgery unscheduled by insurance co.
May 2016 to present - Appealing. Summit the couch daily; trek to restroom/kitchen as necessary.
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  #2  
Old 07-14-2016, 08:28 PM
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Harrison Harrison is offline
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Join Date: Oct 2004
Posts: 7,010
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Welcome, John. We look forward to supporting you in your journey back to wellness! Take it slow, bro.
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"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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  #3  
Old 07-17-2016, 11:44 AM
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Cynlite Cynlite is offline
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Join Date: Mar 2015
Posts: 666
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Thought this information might be helpful since you are in the information gathering stage again. After reading your posts, it seems you are appealing and planning on having surgery in Georgia. If that is the case, there are two other members here who had surgery in Georgia. Unfortunately, they did not give the name of their surgeon which is typical for U.S. based members. (I sure wish people would share that information because that is the most important decision when it comes to having surgery and others can benefit from that knowledge.) One is 'CMAC" who had surgery May 2008, Prodisc-C. My notes say that surgery did not turn out so well. The other is "BLOODHOUND1" who had surgery in May 2014, Prodisc-L and he reported doing pretty good after six months. If you send them a PM, perhaps you can find out who their surgeons were. You can use the search feature to read their stories if you are so inclined.

All the data I gathered was from last summer and back to the beginning of the board for cervical patients. I think that most of the people that posted who had the Prodisc-C were mostly earlier on and before the Prodisc-C Nova came out. So, I don't think I have enough data on the Nova to share outcomes from the board on it. Some here like the fact the the Prodisc has less parts than the M6 so, theoretically, there are less places for biofilms to gather. It has titanium end plates which is good. So does the M6. Given a choice if staying in the U.S., I would prefer the Mobi-C because it doesn't have the big keel design that the Prodisc has but, it is not made out of titanium so, was not a possibility for me. It is referred to as a bone saving device by Dr. Zeegers. Metal allergies are rare but, were a problem for me so, I had to stay with a titanium device.

Good luck with your appeal. I'm sure sorry the insurance company held you up at the last minute.
__________________
2006: epidural shots did nothing; 2 surgeons recommended 2 level fusion, I declined.
2007 - 2010 4 foraminotomy and cord decompression cervical surgeries and 2 endoscopic discectomy T7-T8 surgeries; total 6 with Dr. Jho (Pittsburgh,PA) My C6/C7 autofused around 2009.
2013 - 2015: epidurals 3 times (again did nothing) and 4 Radiofrequency ablation (or RFA) procedures.
2016 more RFAs, hit the 10 year mark of this insanity and pain, 3 level M6-C ADR with Dr. Clavel May 19, 2016
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  #4  
Old 07-17-2016, 07:36 PM
RiverMiles RiverMiles is offline
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Join Date: Jul 2016
Posts: 19
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Hi Cynlite
Thank you for all of this information. And for the Dr R lead which I've begun to follow up on. In fact, most of the homework I've been doing over the last few days has been based on your posts.

You're right, I am very much in the information gathering phase again. And I am starting over with so many things, even getting a real understanding of my own injury, because I have spent the last 2 1/2 months focused on a different affliction altogether known as Managed Care.

A few things are happening right now that might (big, big might) result in my insurance company approving coverage for a two level ADR. But with each passing day, I am less convinced that is even what I should be hoping for.

I'm not sure how MY ultimate goal compares with that of others. I'm sure there are commonalities but as you can probably guess by my username and signature, my first priority above all else is Long Term Mobility. For me, this takes priority over pain resolution, or any other goal. What you said about skiing really resonates with me though am not a skier. For me, This would mean fixing it right and addressing anything above or below or peripheral that can be reasonably expected to cause problems in the future. The more I learn the more i question whether my current path can even achieve that.

My neurosurgeon, by all accounts, is extremely gifted. I also have no doubts about his honesty and integrity. He volunteered the fact that he had never done a two level before but had performed many one levels. He also stated without my asking that he would typically want to perform a new procedure a few times before he could comfortably recommend it to a patient with the same confidence he would recommend other procedures that may be appropriate for a given patient. Following that consult he attended LDRs training. But according to LDRs surgeon finder, he wasn't previously trained on Mobi-C at all so his experience with disc replacement wouldn't even be with the same device. And it seems like that might be important.

So if two level experience with the only device available to me is important my next step would be to reach out to TBI, Dr R, or some of the other luminaries mentioned on this site. And an important prerequisite for that is to figure out if my insurance company will even cover me outside of Georgia. But is this even what I should wish for, when my potential outcome will be limited to the framework of the one device available to me?

As the possibility of having this surgery covered begins to look remotely possible, I wonder if I can even achieve my best outcome with any surgeon or procedure my insurance would possibly cover.

I have given alot of thought to reaching out to Dr Clavel. Based on all I have read he seems to represent the closest possibility of reaching my goal. I could make the decision that if I have to pay out of pocket I will seek Dr Clavels guidance and service. But then, even if I can figure out all the logistics of making this happen, what happens after? Will any physician take me as a spine patient for my follow up especially if I receive an M6 which may never be used in the US?

These are the reasons why I decided to log on just now and start reading your posts from the beginning, to see if I could fill in some of these blanks. That's when I saw your post.

Thanks again not just for the content addressed to me but for all of you entries.
__________________
Nov-Dec 2015 - 10 miles in the kayak, a N. GA mt summit, a 12-mile day-trek.
Late Dec '15-Mar '16 - Years of "normal" tension in my neck became radiculopathy w/ neuro deficits / Standard conservative treatments. / MRI reveals C5-C7 unpleasantness.
Apr 18th, 2016 - 2LVL ADR scheduled for May 3rd!.......Apr 29th, 2016 - Surgery unscheduled by insurance co.
May 2016 to present - Appealing. Summit the couch daily; trek to restroom/kitchen as necessary.
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  #5  
Old 07-17-2016, 09:43 PM
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Cynlite Cynlite is offline
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Join Date: Mar 2015
Posts: 666
Default

Did you read both of my pre-surgery threads? I went through the same decision making process. I broke them in to two threads because my New Member introduction thread got moved almost immediately to the International Forum since at the time I was looking in to what Europe had to offer compared to the U.S. So, I started another thread about paying cash and staying in the U.S. under the New Member Forum. I looked at all the data I could find and it took me months and many hours of research to come to my decision. I tried very hard to not let the financial aspect impact my decision. Some can do that and some just can't do that because it's a pretty big nut to bite off when insurance doesn't help.

The surgeon is the most important decision and finding one in the U.S. that has lots of experience with ADR here is not easy. (Yes, there are many here that do it but, I'm talking about the really experienced ones.) Several TBI doctors have the experience and then recently I learned about Dr. Riew. There is also Dr. Light up in San Francisco. I think your insurance better cover you if you go with the two named surgeons because one is in New York City and the other San Francisco so, they don't come cheap. (They are both Mobi-C doctors.) TBI's cost for ADR's is very good for the U.S. and perhaps they can help get your insurance on board but, my understanding is you have to pay cash up front with them.

After I did all my research, sent out lots of packages, had phone calls with three other surgeons and had my appointment up at Barrow, plus got turned down by their Mobi-C doctor (because I think my very screwed up neck was way above his experience level), I Skyped with Dr. Clavel. I knew after that conversation that he was the only surgeon for me. Knowledge is power or can be just plain confusing in this journey. If you bring Dr. Clavel into the picture, he may tell you things you haven't heard from other surgeons. I'm not the only member here to mention that he sees things others don't so, if you think you can pull off the trip to Europe, then I highly recommend getting his opinion. I put all my eggs in his basket and he's in Barcelona. If something happens to me here as a result of the surgery, there is no other surgeon I would want to help me so, back to Barcelona I would have to go. I included the one year of insurance in my package with Dr. Clavel just in case something goes wrong that is unexpected but, I expected a good outcome based on what I read from others before me plus, I came to trust him. Of course, there are no guarantees but, I at least went into it with a great attitude.

Besides dealing with egos and fear of a malpractice lawsuit, one of the problems with trying to get a U.S. surgeon on board after you get an M6-C in Europe, is that they just don't have the experience here with it. Surgeons won't see you if they don't think they can do anything to help you. It's in the trials for single level and who knows, may be approved for one level by next year. For a single or two level, I think one can make an argument for staying in the U.S. especially, if your insurance will help but, only with the right surgeon! Dr. Clavel thought I needed three and explained why to me, so I put my trust in his eyes and experience. Plus, I still don't think there is a snowballs chance in you know where that my insurance will help pay for that surgery. I looked hard into that as well. By the time I got to Dr. Clavel, I had already seen one surgeon in the U.S. who did four neck surgeries on me. I think that hurt me when it came to trying to find another surgeon in the U.S. You haven't had surgery yet so, you have that going for you. Choose your surgeon wisely because it's not so easy surgeon shopping later in the U.S. or Europe IMO after you have had your first surgery. We all want that first surgery to be the one that works! I don't recommend getting on the multiple surgery bandwagon...it's not fun! Why not consider going to a surgeon who is known for fixing other surgeon's mistakes to begin with if you can pull that off?

The last consideration is do you want a Neurosurgeon or an Orthopedic surgeon implanting your ADR? They do things a little differently sometimes. Maybe PhillyJoe will pipe in on this because that came into play with his surgery.

I preferred a Neurosurgeon who could get the job done quickly so, I wasn't under anesthesia for too long and I wanted one that would pay attention to all the osteophytes and do his best to get them all. Those darn osteophytes are a big deal both before surgery and after when considering your outcome IMO. I also preferred to be in a really good hospital not a surgical center for my surgery. So, surgeon first and then there is the rest of the list. There is a lot to consider.

Sorry for doing a data dump on you but, I do hope it helps you to figure out what you want to do.
__________________
2006: epidural shots did nothing; 2 surgeons recommended 2 level fusion, I declined.
2007 - 2010 4 foraminotomy and cord decompression cervical surgeries and 2 endoscopic discectomy T7-T8 surgeries; total 6 with Dr. Jho (Pittsburgh,PA) My C6/C7 autofused around 2009.
2013 - 2015: epidurals 3 times (again did nothing) and 4 Radiofrequency ablation (or RFA) procedures.
2016 more RFAs, hit the 10 year mark of this insanity and pain, 3 level M6-C ADR with Dr. Clavel May 19, 2016
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  #6  
Old 07-18-2016, 10:39 AM
phillyjoe phillyjoe is offline
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Join Date: Jan 2013
Posts: 286
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For cervical, I did in fact favor neuros both in the states as well as Europe Not sure I have solid reasons for this other than a guy like Clavel does a lot things that also involve brain. So that gave me confidence. I used to spend some time in Germany, and I have to say that I was also impressed by dr bierstedt but I somehow believed follow up with Clavel would be easier and more consistent. Clearly, once you go outside the US you are going to have a hard time finding a US doc to assist. But I'd want the surgeon who did the first job to fix any problems, anyway
__________________
Pre Surgery:
C3-C4:Mild disc osteophytes. Mild-moderate right facet arthrosis. Mild right foraminal stenosis.
C4-C5:Midline central disc protrusion, significant. Mild canal stenosis.
C5-C6:Moderate disc osteophytes. Mild-moderate canal stenosis. Moderate-severe bilateral foraminal stenosis.
C6-C-7:Mild-moderate disc osteophytes. Mild canal stenosis. Moderate left and moderate-severe right foraminal stenosis.
June 29,2016-3 level M6 (C4-C7) Dr. Clavel Barcelona
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  #7  
Old 07-18-2016, 11:22 AM
Cynlite's Avatar
Cynlite Cynlite is offline
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Join Date: Mar 2015
Posts: 666
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Well, I thought it was Phillyjoe. Sorry, I guess it was someone else I talked to who mentioned some differences between the neurosurgeons and the orthopedic surgeons. Since I can't remember, here's an article that compares the two:

http://www.spine-health.com/treatmen...-spine-surgery
__________________
2006: epidural shots did nothing; 2 surgeons recommended 2 level fusion, I declined.
2007 - 2010 4 foraminotomy and cord decompression cervical surgeries and 2 endoscopic discectomy T7-T8 surgeries; total 6 with Dr. Jho (Pittsburgh,PA) My C6/C7 autofused around 2009.
2013 - 2015: epidurals 3 times (again did nothing) and 4 Radiofrequency ablation (or RFA) procedures.
2016 more RFAs, hit the 10 year mark of this insanity and pain, 3 level M6-C ADR with Dr. Clavel May 19, 2016
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  #8  
Old 07-18-2016, 12:40 PM
phillyjoe phillyjoe is offline
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Join Date: Jan 2013
Posts: 286
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I did have a discussion with Clavel regarding bone wax.He says neuros use it and orthos typically may not.. Balancing infection risk, with osteop growth risk posterior to the ADR. So that also may be a point of difference, for what it may be worth
__________________
Pre Surgery:
C3-C4:Mild disc osteophytes. Mild-moderate right facet arthrosis. Mild right foraminal stenosis.
C4-C5:Midline central disc protrusion, significant. Mild canal stenosis.
C5-C6:Moderate disc osteophytes. Mild-moderate canal stenosis. Moderate-severe bilateral foraminal stenosis.
C6-C-7:Mild-moderate disc osteophytes. Mild canal stenosis. Moderate left and moderate-severe right foraminal stenosis.
June 29,2016-3 level M6 (C4-C7) Dr. Clavel Barcelona
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  #9  
Old 07-18-2016, 01:54 PM
Cynlite's Avatar
Cynlite Cynlite is offline
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Join Date: Mar 2015
Posts: 666
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Yes, that is it Phillyjoe. You also mentioned some percentages of patients that will develop HO post surgery according to Dr. Clavel. Would you please share that here too. It supports the point of why I put my stomach through heck for 28 days post surgery taking high doses of NSAIDs.

Unfortunately, the practice of taking NSAIDs post surgery and the amount is not standardized in the U.S. or Europe. It would be great if others would join into this conversation and add their surgeon name and what they were prescribed post surgery for HO prevention. Maybe we can pull together an informal listing. I know that Harrison has been trying to get people to share this information since I joined last year. Thanks.
__________________
2006: epidural shots did nothing; 2 surgeons recommended 2 level fusion, I declined.
2007 - 2010 4 foraminotomy and cord decompression cervical surgeries and 2 endoscopic discectomy T7-T8 surgeries; total 6 with Dr. Jho (Pittsburgh,PA) My C6/C7 autofused around 2009.
2013 - 2015: epidurals 3 times (again did nothing) and 4 Radiofrequency ablation (or RFA) procedures.
2016 more RFAs, hit the 10 year mark of this insanity and pain, 3 level M6-C ADR with Dr. Clavel May 19, 2016
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  #10  
Old 07-18-2016, 11:29 PM
RiverMiles RiverMiles is offline
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Join Date: Jul 2016
Posts: 19
Default No please dump away

Sorry for doing a data dump on you but, I do hope it helps you to figure out what you want to do.[/QUOTE]

Seriously, it's all helpful. Wish my upload speeds were faster.

Like everyone I've spent alot of time considering the HO thing. The few publications I've found that addressed this topic didn't assign a great deal of consequence to it. One reported which devices were more likely to result in HO. One mentioned it as just another result potential representing a small percentage the sample. Then one reported it as a significant portion of the sample but noted its presence didn't usually produce clinical consequences. Some of the experiences described in the so forum Tell a much scarier story.

I'm curious about the use of nsaids the way you mentioned. It makes sense to do the nsaid-blast right after surgery but what then I wonder? Is the theory something like, the HO risk diminishes once the acute system shock of the surgery is in the rearview so we can ease up on the nsaids? Or is it a constant viable threat, every time we slip or misstep or have systemic inflammation from a cold or flu? Everytime we work late for several days to finish a project. Everytime we "sleep wrong?" Someone in another post mentioned that eventually the adr levels would fuse anyway... Huh???
__________________
Nov-Dec 2015 - 10 miles in the kayak, a N. GA mt summit, a 12-mile day-trek.
Late Dec '15-Mar '16 - Years of "normal" tension in my neck became radiculopathy w/ neuro deficits / Standard conservative treatments. / MRI reveals C5-C7 unpleasantness.
Apr 18th, 2016 - 2LVL ADR scheduled for May 3rd!.......Apr 29th, 2016 - Surgery unscheduled by insurance co.
May 2016 to present - Appealing. Summit the couch daily; trek to restroom/kitchen as necessary.
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