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  #11  
Old 05-15-2015, 02:45 AM
Anne189 Anne189 is offline
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Join Date: May 2015
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Thank you too Cynlite!

I did send out my images to ONZ for their review today! Thank you for your insight. I really appreciate it! It means so much as you know!
I did look up the names you posted and it really does make you stop and think more about Dr. Bertagnoli. He just updated his website on a bunch of 4 level ADR patient comments too and one 5 level. But after reading all about Jamie in 2010, I don't feel totally comfortable even though he seems to have learned from that type of horrible error, as I heard he now requires every patient to get a Dexa Bone Scan before ADR surgery. Who wants a doctor to learn on them? My prayers are with her and everyone else suffering. I wish this board could compile outcomes along with how many levels and what doctor.
__________________
History of pain since 10/1996, over that time, 6 auto accidents.
My doctors warned not to wait too long, due to my recent symptoms of increasing weakness in my left arm, myelomalacia, numbness and tingling, and the fact I could be paralyzed if I tripped, I chose to go forward with a 3 level fusion C4/5, C5/6, C6/7 after considering the strain of the costs to get ADR and the stress it would put on my family.
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  #12  
Old 05-15-2015, 11:15 AM
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Cynlite Cynlite is offline
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Join Date: Mar 2015
Posts: 666
Default 2 level limitation - Correction!

jss, I thought the FDA approved the Mobi-C for two levels in the U.S. How does TBI get around that and do four levels? Maybe it has to do with whether or not they are consecutive levels. Thanks for correcting my error. I checked my notes and did see one incidence where someone had 4 Prodisc-C ADRs (don't know surgeon) and 1 incidence where someone had 3 Prodisc-C ADRS in the U.S. (Dr. Chapman, WA 2008.)
__________________
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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  #13  
Old 05-15-2015, 11:31 AM
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jss jss is offline
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My understanding is that it works something like this ... the FDA doesn't approve a device for some number of levels, but rather they approve the device within the parameters of the trial. After which any usage of that device outside those parameters is termed "off label". Unless explicitly decreed, "off label" usage is not prohibited by the FDA. But, good luck getting your insurance carrier to cover an "off label" application.

The four level ProDisc I was referring to goes by the handle davidj8121 on this board. He had four lumbar levels done by Dr Zigler at TBI.
__________________
C4/5 - ACDF in 2000
C5/6 - ACDF in 2002
C3/4 & C6/7 - M6 ADR, Nov 2009, Barcelona
Conceded defeat to a manifestly disingenuous BCBS-TX in my quest for reimbursement, Jan 2011
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  #14  
Old 05-15-2015, 11:49 AM
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jss jss is offline
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Anne,

TBI is a spine facility that participates in a lot of IDE trials. So they are on the 'cutting' edge of most all spine treatments that are new in the US.

Most of the surgeons there have been doing ADR for many years and are probably on par with their European counterparts. As spine surgery is a for-profit business and not a charity, I think that their pricing, willingness to negotiate, etc ... is all based on the desire to make a buck. My guess is that if they have a slow time (like a car dealership when it rains) that you could negotiate a better price than if they have more patients than they can treat.

If you know of a specific doctor there that you want to see, you can request an appointment with them. If not, then they'll assign you the next one that's available.

Some countries have national registries for surgical procedures where you can look at success rates for a myriad of procedures; English Wales Joint Registry, Austrailian Registry, etc... I'm unaware of such an animal for the US. I don't know how you'd go about comparing US and European success rates other than forums like this one. That may not be a 'good' way of comparing, but as far as I know it is the ONLY way.

If you have surgery in Europe (like I did), it is likely that you'll have trouble finding a spine surgeon in your area that is willing to treat you if, may God forbid, you have problems when you get home. It took me weeks to find a surgeon in the Dallas area that was willing to see me for a "well-baby" check a year and a half post-op. That is a common story btw.

All surgeons have bad outcomes, and for a host of different reasons. A key is to find one that seems to have among the lowest rates of of bad outcomes. Unfortunately the only way I know of looking at their outcome rates is by spending hours and hours in surgical outcome forums. This is what Cynlite seems to be currently doing, and it is the absolutely best way to start this process. If you do that too, you will begin to see patterns emerge; patterns with doctors, with implants, with specific treatments after specific symptoms, etc... I wouldn't shy away from Blumenthal just because you've found a patient that had a bad outcome with him. Now if you discovered that was a pattern, then yes. (you won't find that btw)

Good Luck!
__________________
C4/5 - ACDF in 2000
C5/6 - ACDF in 2002
C3/4 & C6/7 - M6 ADR, Nov 2009, Barcelona
Conceded defeat to a manifestly disingenuous BCBS-TX in my quest for reimbursement, Jan 2011
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  #15  
Old 05-15-2015, 12:03 PM
NJ Gene NJ Gene is offline
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Join Date: Feb 2013
Posts: 376
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Anne, as a patient who just had ADR at the Texas Back Institute I can attest to what JSS is telling you.

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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  #16  
Old 05-15-2015, 10:41 PM
Anne189 Anne189 is offline
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Join Date: May 2015
Posts: 12
Default Many thanks to you all!

I wish I joined this group months ago. I was told not to trust what you read online and that can be true but it is also the only way to hear about other patients and their outcomes. All the surgeons I see make fun if I reveal where I've heard things and my parents have made comments to me that only people in pain come on them to it is skewed regarding happy fusion patients, if there are any?

I felt pressured to take the 3 level fusion of C4-C7 appointment for surgery I have for this Monday, as I don't have the money to do it on my own, I hate the idea of taking it from my parents, currently unemployed and my parents have been scared by the local surgeons on my appointments so it is very hard to really change their minds. When I panic I feel maybe I should go for TBI. I have seen a few times people aren't really happy with ProDisc & Mobi C though. I even had a Medtronic rep who knows the local doctors in my area suggest to me not to risk a 3 or 4 level ADR. I need to get on the right path with this!! It is hard when you are fearing loosing the use of your dominant arm!!
__________________
History of pain since 10/1996, over that time, 6 auto accidents.
My doctors warned not to wait too long, due to my recent symptoms of increasing weakness in my left arm, myelomalacia, numbness and tingling, and the fact I could be paralyzed if I tripped, I chose to go forward with a 3 level fusion C4/5, C5/6, C6/7 after considering the strain of the costs to get ADR and the stress it would put on my family.

Last edited by Anne189; 05-15-2015 at 10:48 PM. Reason: missed word
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  #17  
Old 05-15-2015, 11:53 PM
cfbugsbunny's Avatar
cfbugsbunny cfbugsbunny is offline
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Join Date: Apr 2009
Posts: 168
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As a four level cervical patient (two fusion / two adr) I have to really talk up Dr. Clavel. Read Cheryl's post in the ADR surgical outcome area. I don't work for any of these people but I do like to share my story and would be willing to talk to you if you would like. There are many great surgeons overseas that are very experienced with the latest technology. I feel at times that the US is just on the cusp of this type of surgery but are not quite there yet. PM me if you would like to discuss.
__________________
Mark
July 2009: Two level ADR performed at Stenum Hospital in Germany. Spinal Kinetics M6 - Dr. Ritter Lang

March 2011: Removal of previous M6 due to auto-fusing over implants. Fusion at C5-7 and new M6 ADRs at C4-5 and C7-T1 with Dr. Clavel

January 2013: Lumbar surgery with M6-L at L3-5 and single level BalanC at L2-3 with Dr. Clavel

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  #18  
Old 05-16-2015, 12:03 AM
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Cynlite Cynlite is offline
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Join Date: Mar 2015
Posts: 666
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Anne, if I read your post correctly, you are scheduled for the fusion surgery on Monday? If this is true, please check out the Facebook group for Cervical Disc Replacement Surgery. People on that page are having both fusion and ADR surgeries. I think you might find them to be a good support group for you too. There is also a group for just fusion but I could not find the name. Sorry this is not working out for you as you would like it to. Wishing you wellness and a good recovery.
__________________
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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  #19  
Old 05-19-2015, 07:32 PM
Anne189 Anne189 is offline
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Join Date: May 2015
Posts: 12
Smile

Hello and thank you adr support family. I'm 24 hour out of surgery. I'm still very weak from throwing up from the anesthesia. But I wanted to thank everyone for their support, love and caring. As I mentioned I was really sick for the first few months where I couldn't concentrate on the Internet. All my docs over the years told me that spinE sugary was very rare. But apparently not for us. in the last month and a half I had to evaluate waiting too long to get ADR at this point, when I have such bad myelomalacia that I could be paralyzed if I fell, in comparison to wiping out my retirement and taking a lot of assistance from my family too. Considering all that it was too risky to get the adr for me, I had the 3 level fusion from C4 to C7. I must face this with good faith to make the most of the gifts I do still have in life. I hope this all sounds coherent as I'm still quite drugged etc. Lover and blessings to you all!
__________________
History of pain since 10/1996, over that time, 6 auto accidents.
My doctors warned not to wait too long, due to my recent symptoms of increasing weakness in my left arm, myelomalacia, numbness and tingling, and the fact I could be paralyzed if I tripped, I chose to go forward with a 3 level fusion C4/5, C5/6, C6/7 after considering the strain of the costs to get ADR and the stress it would put on my family.
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  #20  
Old 05-19-2015, 07:50 PM
Cynlite's Avatar
Cynlite Cynlite is offline
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Join Date: Mar 2015
Posts: 666
Default

Anne,

Congratulations on being on the other side of surgery! I'm so sorry you were sick from the anesthesia. I've been there and done that....it's not fun at all.

We all make the decisions we have to so, I'm sure you made the right decision for yourself. Having a positive attitude makes a huge difference and it sounds like you have one! Wishing you a speedy recovery and many pain free days going forward.

Cynlite
__________________
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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