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  #1  
Old 05-13-2015, 08:16 PM
Anne189 Anne189 is offline
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Join Date: May 2015
Posts: 12
Arrow Hello Everyone! - 3 or 4 level ADR candidate

Hello Everyone,

I'm on the forum because I have researched locally the best doctors in my area, Philadelphia (having a hard time finding a local experienced ADR doc) and so far these have been the suggested standard to manage my issues:
1st ortho - fuse C6/7 (no ADR training)
2nd ortho - fuse C6/7, C5/6, C4/5 (ADR training - stated it was experimental though)
3rd ortho - fuse C6/7, C5/6, C4/5, would be open to a hybrid with ADR (doesn't accept my insurance unfortunately)
4th & 5th neuro - fuse C6/7, C5/6, C4/5 (no ADR training)
6th neuro - fuse C6/7, C5/6, C4/5, would be open to a hybrid with ADR, but feels if a CT scan shows a bone spur it would disqualify me
7th ortho in Germany - 4 level cervical ADR C6/7, C5/6, C4/5, C3/4 with a semi-constrained artificial disc that can correct my kyphosis
Waiting on doctor in Spain's surgical opinion.
The German doctor would cost about $56,000, which I don't have on my own. I'm currently a single, unemployed 41 year old whose parents are willing to assist me in this, IF they agree with it. Ugh. If they had no means to help me I would be forced to get a 3 level fusion soon, as I'm fearing more loss of sensation in my dominant left arm and more weakness. Also if I have a bad fall or car accident I could be paralyzed.
Since they are kind enough to offer to assist me I'm still researching out of the country options. My mother fears traveling abroad at 72 years old and my dad is 74 and skeptical.
I realize this forum is not for medical advice, but I'm looking for experienced people to assist me in this very important decision. I'm fighting hard not to have a 3 level fusion and a future of more surgeries that would have a less and less chance of being successful. I fear loss of function as a single person who needs to make a living to support themselves. If you know of 3 level successful fusions, I would love to hear it. If you know of successful 3 or 4 level ADR surgery I would really love to hear that too. And how to protect myself in doing so. My ultimate goal is to get the ADR surgery, have it covered by insurance by the grace of God and have an excellent outcome. If I convince my family to help me and it goes badly I will feel horrible about it for the rest of my life. Please offer any assistance as it would be so appreciated!! Many blessings to all .
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  #2  
Old 05-13-2015, 08:25 PM
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Cynlite Cynlite is offline
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Anne, I'm sorry you are struggling. I'm still trying to figure out this puzzle too. I have found zero surgeons in my state also and I know how frustrating that is after trying so hard to find them. I too am a cervical patient but, most likely two levels since one of my levels autofused

I just finished reading all the cervical posts in the Post Surgical Forum. The only surgeon in PA that I found was Dr. Winer. The member's name is Marc in PA if you want to search for his story.

Do you have health insurance that will cover you out of state?

There are successful stories for 3 and 4 level cervical patients. I've read them so there is hope.

Is the German Doctor Bertagnoli? He's not in the running for me. He is always more expensive and has a mixed success rate from what I've read.

Dr. Bierstedt in Germany charges $34.5 thousand euro for a three level and has a good success rate with his patients on this board. I assume Dr. Clavel will come in at around or below that cost and also has a good success rate with patients from this board.
__________________
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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  #3  
Old 05-13-2015, 08:42 PM
Anne189 Anne189 is offline
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Join Date: May 2015
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Quote:
Originally Posted by Cynlite View Post
Anne, I'm sorry you are struggling. I'm still trying to figure out this puzzle too. I have found zero surgeons in my state also and I know how frustrating that is after trying so hard to find them. I too am a cervical patient but, most likely two levels since one of my levels autofused

I just finished reading all the cervical posts in the Post Surgical Forum. The only surgeon in PA that I found was Dr. Winer. The member's name is Marc in PA if you want to search for his story.

Do you have health insurance that will cover you out of state?

There are successful stories for 3 and 4 level cervical patients. I've read them so there is hope.

Is the German Doctor Bertagnoli?

Dr. Bierstedt in Germany charges $34.5 thousand euro for a three level.
Hi Cynlite,

Thank you for your quick response! Yes I have read successful 4 level ADR stories but also some horror stories. It all depends on your health & biology, your surgeons skills and your recovery care. Anyone of those things I think could bring a very drastically different outcome. It is so nerve wracking!!

Thank you for your advice about Marc in the Post Surgical Forum, I will look for it.

I currently have the only insurance in my state that would cover ADR, Aetna, but it is only good for Pennsylvania!

I feel like I've googled thousands of doctors and I have found some even on this forum that people have raved about and then when I google them I find terrible complaints about them! Everyone's experience is different and you don't know what all the variables are.

So sorry to hear that you are o this journey too. I'm grateful for your response. Many blessings to you!
__________________
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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  #4  
Old 05-13-2015, 08:47 PM
Anne189 Anne189 is offline
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Join Date: May 2015
Posts: 12
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Just noticed your last question Cynlite,
Yes the German doctor is Bertagnoli. I've not heard of Dr. Bierstedt. Does he have a great reputation and a lot of experience?
__________________
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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  #5  
Old 05-13-2015, 08:56 PM
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Cynlite Cynlite is offline
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I'd toss out Bertagnoli and replace him with Dr. Bierstedt. Dr. Bertagnoli has mixed reviews and some that concerned me. Plus, he charges more than anyone else. Dr. Bierstedt will evaluate your case for free and does have a good success rate. ONZ Spine Surgeon for Disk Replacement, German Spine Specialists – M6 ADR Artificial Disk Replacement - Stop spine pain now, Lumbar Cervical Spine Surgery

After months of frustration, I recently called my HMO (I'm on Medicare disability) and they said that I could ask my primary care to ask my insurance to make an exception and let me leave the network/state because I cannot find the specialist I need within network. I have Cigna. It's worth a shot! If you get that far, then I would recommend that you contact Dr. Blumenthal at the Texas Back Institute. However, keep in mind that in the U.S., they can only do two levels. I'm only suggesting this because of the financial constraints.
__________________
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 05-13-2015, 09:04 PM
Cynlite's Avatar
Cynlite Cynlite is offline
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Join Date: Mar 2015
Posts: 666
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Here are the patients that didn't do so well with Dr. Bertagnoli who had the complex surgeries like you. The first two are Cervical patients and the 2nd two are Lumbar.

SandraL
Junk Back
Jamie5136
Andy
__________________
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 05-14-2015, 09:22 AM
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jss jss is offline
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Posts: 1,411
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Anne,

Condolences on your physical issues, but welcome.

You will find that two level cervical success stories for ADR and/or fusion abound. While the great majority of three level are also successful, the success rates seem to drop as more levels are added. I have four cervical levels done; two fusions and two ADRs. I am doing very well and even completed an Ironman with all of that mess in there.

Given your financial picture, the recent experience of the poster on this board that goes by njgene is particularly relevant to you. Presumably because of financial competition, Texas Back Institute (a premier ADR provider in the US) will negotiate a lower price for surgery than we have to spend overseas. As your financiers are skeptical of a European ADR, perhaps they'd be more open to a domestic one.

Texas Back Institute (TBI) is in Plano, TX (suburban Dallas). Depending on the doctor you get, they'll probably prescribe some combination of ADR and fusion with either the ProDisc-C or Mobi-C. That facility is worth considering; especially in your circumstances.

@Cynlite ... I don't know of a two level limitation. I know of one poster on this site that had four lumbar levels done at TBI (in two or three different surgeries).

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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  #8  
Old 05-14-2015, 10:35 AM
NJ Gene NJ Gene is offline
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Join Date: Feb 2013
Posts: 376
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Anne,

I'm not promoting this surgeon in any way. However, he is located in Allentown, PA

Dr. Jeffrey McConnell, MD, Orthopedic Surgeon, Allentown, PA, 18104

I saw him for a consultation, but ultimately decided on Dr Blumenthal at the Texas Back Institute.

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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  #9  
Old 05-14-2015, 12:41 PM
Dema Dema is offline
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Join Date: Jul 2013
Posts: 169
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Hi Anne, sorry to hear about your pain in the neck! I too have multi-level cervical problems (3-levels) and still searching for the right surgeon. Fully agree with NJGene, that it has been hard to find a surgeon in this area promoting ADR! The 2 exceptions in NY/NJ area were Dr. Fabien Bitan & Dr. Jeff Goldstein, but I did not want to do ProDisc, so cancelled my surgery appointment with Dr. Bitan.
Like you, the surgeons' recommendations varied on number of levels to operate on, between 2 or 3, and currently waiting for more opinions from Europe to help me decide! I would like to do the levels that are causing me the pain, and leave the ones that are non-symptomatic, and hope will not have to do them later or by then more devices will be FDA approved & the surgeons here be more familiar with ADR.
Best of luck.
__________________
7/2007 Whiplash injury
11/2009 Cervical disc herniation C3-C6 (C5-C6 worse)
2010-2013 Conservative treatments (drugs, PT, epidurals, prolotherapy, acupuncture...etc)
, little effect on pain
Considering surgery (typical questions, which type & which surgeon!)
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  #10  
Old 05-15-2015, 02:27 AM
Anne189 Anne189 is offline
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Join Date: May 2015
Posts: 12
Smile

Thank you all for the posts jss, NJ Gene, and Dema!

I did contact the Texas Back Institute through their main email and they stated they can negotiate prices and do 4 level ADR if appropriate!!!! (Even though I have heard the FDA only approves of no more than 2 levels is the USA) Is this an experimental facility?

My first thoughts were, well if one office manager told me that surgery in the states for a 3 level fusion, would be about $235,000 billed to the insurance company, then how could they do better than Europe, charging about $50,000 for a 4 level ADR? Is it because they are building up their experience and credibility? What are they going to cut back on since you are a special finance case? Will you get the doctor you want or a new one building up his experience? Do they have the same success rates as the ones in Europe? Do they have access to the same means to do it as Europe? When you fly back to your hometown will your local doctors help you or know what to do with you?

Also, I don't think patient reviews online are always 100% credible, you don't know if the doctor is removing the negative ones or writing the positive ones, but when you look up some doctors like Dr. Scott L. Blumenthal you can find some people complaining about their ADR surgery with him and others raving about it. Someone from just 2013 stated they now live in pain forever from the ADR surgery he performed. Did the patient do something wrong? The doctor? Is there any doctor out there with a perfect track record, probably not.

I will follow up with them tomorrow though! Thank you for the encouragement!
__________________
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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