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  #1  
Old 04-30-2015, 01:47 PM
acronymforme acronymforme is offline
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Join Date: Apr 2015
Posts: 1
Default overwhelmed.

I don't really have a spinal history. One day I was fine, next day I wasn't. I have no clue how it happened, but I am certain I do not want a fusion! I could be paralyzed and I will still be drug screaming into the OR for a fusion.

So, I need 3 levels - or maybe not.

I've done a bit of research and have gone to various doctors all over the US and have consulted with a few overseas.

Some Doctors (in US) who claim to perform disc replacements, run scared when they hear "more than one level", "kyphosis" or "Osteophytes" and claim it is not FDA approved for more than 1 level or with one of the aforementioned words. These are always the Neurosurgeons. They all want to do a fusion. They try to scare me and tell me I'm a walking timebomb. They are always very cautious about disc replacements and don't seem to be very well educated on the new (really old) technology. It appears the last update they read was 10 years ago. They're probably tired of reading from medical school 50 years ago.

If your only tool is a hammer, everything becomes a nail.

Doctors (in the US) who are willing to do disc replacements and don't care about the "kyphosis", "Osteophytes" or "multi-level" are typically minimally invasive surgery centers who operate their own independent/out of network surgery clinics. These are always Orthopedic doctors. These doctors are more open to new technology, and more maverick in their approach, but are also more apt to have been a part of certain medical trials or have a financial stake in the certain disc they are proposing (selling).

The problem with this is 100% cost. US surgery costs are astronomical. Also, everyone proposes the Brian disk, but I don't know if it's the best one. It also isn't approved for multiple levels.

So, I looked overseas... Where this technology has been used for oh, 30 or so years...

I found a German doctor who holds patents for certain discs, but wiring money to an offshore account is a bit scary. Plus the price kept creeping up each time I asked. He seems authentic, but again, there is monetary profit in using a specific disc he has a financial stake in. There are considerations at play such as: "responsiveness, who would I follow up with in the US, doctors won't touch another doctors work, what if something goes wrong and I'm stuck in Germany, what if something goes wrong and I can't get back to Germany, will I have legal protections?, etc.." I need to be sure that something fusing to my spinal column won't have to be ripped out in the future, or take my spine with it if it is... I decided to do more research. There is still one more doctor in Germany I'll look into before it's done.

And then I reached out the Medical Tourism companies. I haven't followed up with them yet. There "appear" to be some top notch spinal centers in India and other parts of Europe, but anyone can stick a bandage on their neck and shoot a video claiming to be "healed." Plus all the YouTube videos look like they were recorded in the 1970's.

So then I circled back to the US and spoke to more doctors. A neurosurgeon told me that there have been studies showing that these discs can actually repair themselves with the right therapy. He prescribed me a collar, physical therapy and nerve conduction study. He knows I refuse to get a fusion so he steered clear of that discussion.

I also went to another spine center. This final doctor actually spoke some sense. He said, "your main problem is stemming from only 1 level (shoulder pain and numb fingers). That's your worst spot. It's causing nerve problems. Let's just fix this level until something in your condition or insurance situation changes. You have some time and the other levels are not that serious." I also found out that the area of my cervical spine that went belly up only has a natural 7 degree flexion anyway and that I had lost that mobility loooong time ago in the 3 levels. I hadn't even noticed to be honest. I learned that rotation and up/down of the head are at levels 1 & 2 of the spine anyway.

Sounds legit. So if insurance will pay for it (I have the worst insurance on the planet! BCBS), I will do this. However, it is a Bryan disc again. If insurance won't cover it, I'm heading to Germany for one of the doctors there. India worries me. The Internet is full of people w/funky diseases and they are all living in India. Anti-Inflammatories keep me out of pain, so I can take my time to make a decision.

So the question is.. what is the best disc to use and why? Keep in mind 3 eventual levels & kyphosis.
-Bryan
-MobiC
-ProDisc C

I won't consider a prestige. I'm not a fan of metal shavings
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  #2  
Old 04-30-2015, 03:35 PM
Cheryl0331 Cheryl0331 is offline
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Join Date: Dec 2010
Posts: 890
Default Hello

You have found a great support group! I feel like these people are my friends.

1. The Bryan: I will say that although the Bryan has good shock absorption, it requires too much milling of the vertabrea. If it fails or should develope heterotopic ossification, there is nothing that you can replace it with other than fusion. 2. Prodisc: Less milling, but no shock absorption, and I don't like the single keel, seems that you have to remove more bone than with the Mobi-c, doesn't seem as though it will protect the facet joint over time to me.

mid script: I am not a health care professional

3. The Mobi-C: Still no shock absorption, very loose stability so facet joint concern me later, the keels are better than Prodisc, and could possibly be replaced with another ADR later, just depands. I like it for one or two levels but not three...

Truly why I am going to Europe for the M6-C is had the best of all these!

The one docotor that only want to treat the one level, I would have to ask why? Is it because insurance will pay for 1 or 1 but not 3 or is it that they feel the other level can wait?

Keep us updated!

Cheryl
__________________
54 yr old female 5'7" 147 lbs. non-smoker conservative treatments failed
2007 fusion @ C4-6 peek cages, failed due to long term use of cox-2 inhibitor
2008 revised C4-6 donor bone, plate & screws
2009 fusion with Roi-C @ C3-4
2015 MRI & CT mjr ddd @ C6-7, segmental kyphosis at C7-T1, 2-level M6-C prosthesis by Dr. Clavel Barcelona Spain
2019 H.O. formed behind M6-C @ C6-7 left nerve rt & in spinal canal.
2020 Revision C6-7 to a CP-ESP prosthesis by Dr. Schmitz Dusseldorf Germany

Last edited by Cheryl0331; 04-30-2015 at 03:39 PM. Reason: typo after thought
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  #3  
Old 04-30-2015, 04:28 PM
Stonewall_Boris Stonewall_Boris is offline
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Join Date: Feb 2013
Posts: 547
Default

For my 2 cents, don't focus on a disc, focus on a doctor.
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  #4  
Old 04-30-2015, 07:21 PM
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Cynlite Cynlite is offline
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Join Date: Mar 2015
Posts: 666
Default

Good answer Cheryl. Additionally, my concern with the Mobi-C are metal allergies so, I would want to be checked for that before having that implant. The titanium in the M6-C is less likely to be an issue. I would prefer the M6-C and since it's unlikely I'll succeed here in the US, my decision has been made for me it seems. The M6-C is the best technology today IMO.

I think both the disc and the surgeon are equally important. If the disc is not the right size or placed incorrectly that will lead to problems. I am not a fan of the Pro-Disc because of the osteophyte problems and because I've read of too many people having problems with them down the road. It seems there are only a few surgeons in the US that I would trust at this point in my search.

Trying to get an ADR in the US has proved to be a real problem for me for two reasons. The first is the lack of specialists in my state and the second is insurance coverage. I have and continue to battle the same issues you are and often get overwhelmed by all the obstacles too. Hang in there.
__________________
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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  #5  
Old 04-30-2015, 08:21 PM
NJ Gene NJ Gene is offline
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Join Date: Feb 2013
Posts: 376
Default

Dear Acronym,

Welcome to these boards!! I'm sure you'll get a lot of help here. Please realize that only about 1 out of every 100 spine surgeons in the U.S. perform artificial disc replacement surgery. The 99% who don't perform this will not recommend it. They want something that's going to put $$ in their pocket.

I am having ADR next week at C5/C6 to stop the domino effect of 2 levels of fusion above it. I will be having it done at the Texas Back Institute (TBI) by Dr. Scott Blumenthal. He is one of the first (if not the first) U.S. surgeons to perform this procedure. He works with most FDA approved devices, including the Mobi-C (that's what I'm getting). He has performed this procedure on at least one player of the Dallas Cowboys as well as one of the Mavericks.

Dr. Blumenthal does not accept insurance. However, if you have insurance that has out-of-benefits, you might be covered for all or part of the procedure. Unfortunately, I do not have this. I will be paying a flat fee of $22,375.00 This includes the surgery, hospital, anesthesia, and follow-up. I simply gave them a credit number over the phone and I will be receiving a lot of hotel points because of it. I will also be receiving a nice tax deduction when filing for 2015, as any out-of-pocket (not covered by insurance) medical expenses that exceed 10% of your adjusted gross income can be deducted on Schedule A. Because I'm meeting this threshold, all of my other out-of-pocket medical expenses (i.e. doctor co-pays, RX co-pays, lasik surgery) can be included. Since I file a joint return, all of my wife's expenses can be included as well. If you're more interested in the tax aspects of this, please send me a private message and I'll go into more detail.

That being said, there are many other excellent surgeons on these boards who do take insurance. Furthermore, you don't have the biggest stumbling block that many insurance companies still use as an excuse. Many won't cover ADR at a level that is adjacent to one where one had a fusion. This is because when the FDA first started allowing ADR in the U.S., it did not permit it in this situation. I was told that studies (which some spine surgeons who don't perform ADR tell me and believe) have shown that ADR adjacent to a fusion can destabilize the spine. Well, Dr. Blumenthal mentioned that there have been recent studies that show the opposite (ADR adjacent to a fusion adds stability to the spine) is true. The bottom line is that many insurance companies will hold on to the original FDA rules as long as possible as an excuse not to pay. Since you don't have any fusions, this won't be an issue. You may have difficulty and/or an uphill battle trying to get insurance to cover multiple levels, but if stick to the one you were told was causing the most difficulty with your nerves, you should have no problem.

BTW, I'm sure if you send a private message to Harrison or Cynlite, they will gladly send you a link to ADR surgeons throughout the U.S. Finally, I could have searched around for a surgeon who might have accepted my insurance, but I know I wouldn't have it covered as Blue Cross seems to make an issue of this adjacent level thing. I could have fought and possibly prevailed, but you know what, I am tired and don't feel like fighting. $22K to have this procedure one of the best ADR surgeons in the country (if not the world), which is tax deductible, is money well spent (in my opinion).

Good luck!!

Gene
__________________
Car Accident 2002 - Small Herniated Disc C3/C4
1998 Larger Herniation and Cervical Fusion C3/C4
2005 Herniation C4/C5 - 40 epidural steroid injections from Oct 2005, - Oct, 2007
2008 - Foraminotomy at C6/C7 on left side
Feb, 2010 - Cervical Fusion C4/C5
Dec, 2010 - Lumbar Fusion L3/L5
2013 - Bulge on C5/C6; herniation C6/C7 right side
Mar 26, 2013 - Foraminotomy at C6/C7 on right side
May 5, 2015 - ADR with Dr Blumenthal of TBI for C5/C6 using Mobi-C
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  #6  
Old 04-30-2015, 09:27 PM
Cynlite's Avatar
Cynlite Cynlite is offline
Senior Member
 
Join Date: Mar 2015
Posts: 666
Default Top US ADR Surgeons list

36 Spine Surgeons Performing Artificial Disc Replacement
__________________
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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  #7  
Old 04-30-2015, 10:45 PM
NJ Gene NJ Gene is offline
Senior Member
 
Join Date: Feb 2013
Posts: 376
Default

Thank you Cynlite
__________________
Car Accident 2002 - Small Herniated Disc C3/C4
1998 Larger Herniation and Cervical Fusion C3/C4
2005 Herniation C4/C5 - 40 epidural steroid injections from Oct 2005, - Oct, 2007
2008 - Foraminotomy at C6/C7 on left side
Feb, 2010 - Cervical Fusion C4/C5
Dec, 2010 - Lumbar Fusion L3/L5
2013 - Bulge on C5/C6; herniation C6/C7 right side
Mar 26, 2013 - Foraminotomy at C6/C7 on right side
May 5, 2015 - ADR with Dr Blumenthal of TBI for C5/C6 using Mobi-C
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  #8  
Old 05-01-2015, 12:20 PM
Cheryl0331 Cheryl0331 is offline
Senior Member
 
Join Date: Dec 2010
Posts: 890
Default ditto on wha Cynlite said

What I was trying to say was, that Cynlite was right. It's the skill of the surgeon and the placement of the disc that really matter. I have seen some shotty placement and that can cause complications down the road....
__________________
54 yr old female 5'7" 147 lbs. non-smoker conservative treatments failed
2007 fusion @ C4-6 peek cages, failed due to long term use of cox-2 inhibitor
2008 revised C4-6 donor bone, plate & screws
2009 fusion with Roi-C @ C3-4
2015 MRI & CT mjr ddd @ C6-7, segmental kyphosis at C7-T1, 2-level M6-C prosthesis by Dr. Clavel Barcelona Spain
2019 H.O. formed behind M6-C @ C6-7 left nerve rt & in spinal canal.
2020 Revision C6-7 to a CP-ESP prosthesis by Dr. Schmitz Dusseldorf Germany

Last edited by Cheryl0331; 05-01-2015 at 03:39 PM. Reason: typo found
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  #9  
Old 05-01-2015, 03:40 PM
Cheryl0331 Cheryl0331 is offline
Senior Member
 
Join Date: Dec 2010
Posts: 890
Default so true

Quote:
Originally Posted by Stonewall_Boris View Post
For my 2 cents, don't focus on a disc, focus on a doctor.
Dr. Clavel saw something on my films that no one else felt was important. So the assessment is key!
__________________
54 yr old female 5'7" 147 lbs. non-smoker conservative treatments failed
2007 fusion @ C4-6 peek cages, failed due to long term use of cox-2 inhibitor
2008 revised C4-6 donor bone, plate & screws
2009 fusion with Roi-C @ C3-4
2015 MRI & CT mjr ddd @ C6-7, segmental kyphosis at C7-T1, 2-level M6-C prosthesis by Dr. Clavel Barcelona Spain
2019 H.O. formed behind M6-C @ C6-7 left nerve rt & in spinal canal.
2020 Revision C6-7 to a CP-ESP prosthesis by Dr. Schmitz Dusseldorf Germany
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  #10  
Old 05-01-2015, 04:59 PM
randolf's Avatar
randolf randolf is offline
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Join Date: Apr 2015
Posts: 46
Default

I'm in the exact same spot as Acronymforme. I am considering Dr Pettine for a 2 level Mobi-2 and a single level fusion. waiting for his report. doubt very much cigna will approve, so now Dr. Clavel seems like an appropriate consideration. good luck to Cheryl0331
__________________
2007 mri revealed all but 2 discs of entire spine are either bulged, some torn, a few herniated and compressing foramenal nerves or chord c3-4 fusion. myelomalacia at 2 levels, facet arthropathy, spinal and foramenal stenosis, yadda, yadda...
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