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  #1  
Old 07-05-2013, 08:48 PM
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Harrison Harrison is offline
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Default New Member Needs Advice (Reposted for Laura)

(reposted by Harrison from Laura)

I am new to your forum, and so grateful to have found all of you. I have put off a multilevel fusion for five years because it just never seemed right!!! I currently have a fusion at C5/6, but after a car accident and extensive protocol treatments - I've been left to believe that fusion was my last and only alternative until my internet research came across the M-6, Stenum, and Dr. Ritter-Lang.

After reading your forum, I have decided I need to go elsewhere. I've looked into Dr. Clavel, Dr. Bierstedt, and Dr. Bertagnoli. I've sent my evaluations and diagnostics to all, and am awaiting reply. Any suggestions, advice, ANYONE can give me, I would appreciate it. I am running out of time. I am a teacher and cannot afford to take time off during the school year (especially since I have to remortgage my home to do this) -This summer is my only option - or wait until next year (not sure if I can). Any assistance would be GREATLY APPRECIATED! I'm scared, unsure of myself, and not very trusting of the physicians I've seen to date.
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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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  #2  
Old 07-05-2013, 08:56 PM
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Harrison Harrison is offline
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Hi Laura, pls also inquire within the U.S., there are many clinics that do multi-level spine surgery.

Among Dr. Clavel's patients, many were raving about him for the last year. But I've noticed 5-6 patients in the last few months that have complications (see post-op forum) and other patients that have not posted since their complications. Given Dr. Clavel's statement that he has, according to one patient, 100% success, I find this very troubling. And because of his business relationship with the Stenum sales reps, disgusting.

There's no comparison between Dr. Bertagnoli's surgical expertise and artificial disc replacement knowledge with that of Dr. Clavel's. The doctors and medical professionals in the spinal world are surely laughing or rolling their eyes when they read this. It's not a reflection of our ignorance; in fact, it's sad that we patients don't have the same field intel that they do.

Try stateside first. Going overseas is exhausting and expensive. If that' the best solution for you, then do so after talking / messaging patients here. That's why I started this community in 2004!
__________________
"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 07-06-2013, 09:06 AM
mary2013 mary2013 is offline
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Laura,
To my knowledge, there are not options for multi-level lumbar ADR in the US. They are not approved by the FDA and that is why the sub-community of multi-level L's end up in Europe. For C's, there are multi-level US options - approved by the FDA. Personally, if I was a US candidate, I would find the best US doctor, try to switch my insurance to Aetna in advance and have a US surgery. I see a lot of references to the Plano, Texas clinic. Also, as a teacher you have probably paid in to short term disability. For me, my pride was in the way and I didn't take disability for a long time. I am now on it and the job is secondary. I will go back when I no longer am playing jenga with my back.

Harrison,
Please correct if I am wrong on the FDA piece.
__________________
Aug 2010 Disc Herniations at L4/L5 and L5/S1
Natural Recovery with PT, Chiro, Pilates, Inversion
Dec 2012 Head on Car Accident
Feb 2013 DDD at L4/L5 and L5/S1
June 2013 Stem Cells at Centeno in Colorado
July 2013 2 level ADR with Clavel
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  #4  
Old 07-06-2013, 10:09 AM
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LauraB LauraB is offline
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Due to the expense, I would prefer to have the surgery here, but from what I have read, very few doctors have the had the experience to do it. I have had a few willing to do it (and even reduced "their" cost to fit my out of pocket budget), but found the hospitals to be an enigma when it comes to their charges, and all of the other entities involved. I was under the impression that cervical ADR's for multi-level were NOT approved by the FDA, especially if they are adjacent to a fusion. Did something change that I wasn't aware of? Also, after researching some of the devices, I read about class action lawsuits for failure. My insurance is BCBS. Although I am a teacher - I have been substituting for the past six years - I don't have ANY benefits. I have been working on a full-time position, but want to be "fixed" first. Can you give me any contacts here in the US to redirect my inquiry?
__________________
2006 C 5/6 discectomy and fusion
2008 Automobile Accident
C3/4 leftward bulging of intervertebral disc mild narrowing of left lateral recess
C4/5 central and rightward bulging of disc and osteophyte causing mild right neural foramen stenosis narrowing and right lateral recess narrowing
C6/7 Central disc bulging and osteophyte and hypertrophy of ligamentum flavum canal stenosis and narrowing of bilateral neural foramina
Sept 9, 2013 Scheduled with Dr. Bierstedt C4/5 & C6/7 M6
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  #5  
Old 07-06-2013, 10:23 AM
mary2013 mary2013 is offline
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Sorry Laura . . . I missed the fusion piece. You are probably correct. In that case the multi-level lumbar for Clavel that I just paid was $43,000 USD (exchange rate may vary). This did not include the flights or hotel (I had them take out the hotel and booked it myself.) I debated extensively between Germany and Spain. I choose Spain because Dr. B would only recommend his discs (ProDisc) for my back even though I was interested in the M6. If you look at the number of total surgeries, Dr. B is approx 5000 and Dr. C is approx 2000. From my understanding, Dr. C only puts in M6 and Dr. B puts in multiple types.

I am sorry that disability is not available to you. Teachers are so undervalued in our world.
__________________
Aug 2010 Disc Herniations at L4/L5 and L5/S1
Natural Recovery with PT, Chiro, Pilates, Inversion
Dec 2012 Head on Car Accident
Feb 2013 DDD at L4/L5 and L5/S1
June 2013 Stem Cells at Centeno in Colorado
July 2013 2 level ADR with Clavel
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  #6  
Old 07-06-2013, 10:41 AM
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LauraB LauraB is offline
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Posts: 175
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Thank you for responding so quickly. My head is spinning. I figured (based upon the pre-surgery quote from Stenum) that it would be in the $40K range. I've already started selling off some of my assets - as I don't have that much sitting in my bank (have 3 kids). The M6 "seems" to be the way to go. I've seen a few class-action lawsuits come up on my PRO-Disc search involving hypermobility. I, like you, have definately put my health before my career. With a triple fusion - I stood little chance of having an active life and KNOW I would end up on the surgical table again. The ADR seems like a Godsend. I wish you the best with your lumbar surgery. I see that you chose Dr. Clavel. I'm interested in your findings as well. Medicaltourist (on Clavel's behalf) has been very energetic about gathering my information. I have also been very pleased with Dr. Bertagnoli's office for assisting and educating me through this process.
__________________
2006 C 5/6 discectomy and fusion
2008 Automobile Accident
C3/4 leftward bulging of intervertebral disc mild narrowing of left lateral recess
C4/5 central and rightward bulging of disc and osteophyte causing mild right neural foramen stenosis narrowing and right lateral recess narrowing
C6/7 Central disc bulging and osteophyte and hypertrophy of ligamentum flavum canal stenosis and narrowing of bilateral neural foramina
Sept 9, 2013 Scheduled with Dr. Bierstedt C4/5 & C6/7 M6
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  #7  
Old 07-06-2013, 11:06 AM
NJ Gene NJ Gene is offline
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Join Date: Feb 2013
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Laura,

If you're going to consider Dr. Clavel, I recommend going through his website and not medical tourism. His site is Dr. Pablo Clavel - Barcelona Spine Center - Medical Advantage Barcelona . You will get a response much quicker through him this way. I made the mistake of going through medical tourism and didn't get any info for a month!!

Another physician to consider is Dr. Bierstedt in Germany. He works primarily with the M6 disc. I also heard from others that the rehab he provides post-op is excellent. The facility is connected by a walkway to a Courtyard By Marriott Hotel. That's where you would stay for that week. I believe that the cost of the hotel and meals is covered in the package (for you and a family member). His site is German Spine Specialists – M6 ADR Artificial Disk Replacement - Stop spine pain now, Lumbar Cervical Spine Surgery If you go contact them, I suggest you stay away from the American team leader Kelli Meier. She is a former patient of Dr. Ritter-Lang and is a chiropractic student in Colorado. For that reason, she isn't available that often to answer questions. Furthermore, if you go through her she gets a commission. I would deal with Malte Peterson directly. He's in Germany and works directly with the surgeon. He might get a commission as well, but he deserves it more than Kelli.

Finally, one other physician to consider is Mr. Dare in Southampton, UK. Here is his website: Mr Christopher John Dare Orthopaedic surgery Consultant, Southampton, Hampshire, private hospital specialist. He works primarily with the M6 disc as well.

Last but not least, even though going overseas may be expensive, keep in mind that you can deduct all medical expenses and travel-related costs on Schedule A of your tax return to the extent they exceed 10% of your Adjusted Gross Income. Feel free to send me a PM regarding this if you need more information.

Good luck in this process!!

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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  #8  
Old 07-06-2013, 03:06 PM
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LauraB LauraB is offline
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Posts: 175
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Thank you all so much. I feel as though I had been spinning my wheels trying to sort out all of this information. I have gained a plethora of knowledge through access of this site.

Now, the question of payment....Is it customary that I need to wire money PRIO to surgery (granted I haven't even met the surgeon)? Is this a practice that is related to Stenum and it's affiliates? I do not plan on sending any money - I could understand if they charged a small (deposit) fee for reviewing the case, but "in full" makes me skeptical of their professionalism.

Thank you also for the recommendation. I have heard back that Dr. Bertagnoli has received my medical records and reviewing. I also heard from Dr. Bierstedt - but I will have to FED-EX everything to him - can't seem to read over the internet. I've seen a lot of great reports about Dr. Dare as well.
I know it sounds "cheap," but I do prefer a package price because walking into this endeavor financially blinded can leave me without a home to go back to.
__________________
2006 C 5/6 discectomy and fusion
2008 Automobile Accident
C3/4 leftward bulging of intervertebral disc mild narrowing of left lateral recess
C4/5 central and rightward bulging of disc and osteophyte causing mild right neural foramen stenosis narrowing and right lateral recess narrowing
C6/7 Central disc bulging and osteophyte and hypertrophy of ligamentum flavum canal stenosis and narrowing of bilateral neural foramina
Sept 9, 2013 Scheduled with Dr. Bierstedt C4/5 & C6/7 M6
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  #9  
Old 07-06-2013, 05:30 PM
NJ Gene NJ Gene is offline
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Join Date: Feb 2013
Posts: 376
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Laura, you spoke about Stenum a few times. I hope you aren't considering Dr. Ritter-Lang. If you read through these boards, there are a lot of negative things mentioned about him. There is even a thread with the title, "Nightmare in Stenum". I almost went to him, but thanks to these boards I didn't. He does 6 to 7 surgeries a day vs most other surgeons who do 2 to 3 at most. If you're paying 40k or more, you want somebody who will not rush through your procedure. As far as Dr. Bierstedt goes, you do not have to send your info by Fedex. Use Global Priority Mail, which runs about $20.00, and takes about 4 days. You could even do 1st class for about $5.00, which will take about 1 week. Just because their site says FedEx doesn't mean you need to send it that way. I wouldn't rule Dr. Bierstedt out just because he doesn't take the electronic MRI.
__________________
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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  #10  
Old 07-06-2013, 07:28 PM
mary2013 mary2013 is offline
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Join Date: May 2013
Posts: 21
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From a money perspective, they review your MRI's, X-rays for free and make a recommendation. Then it is up to you to schedule. Ten days prior to surgery for Dr. Clavel, you submit 65% payment; balance due in Spain. I just paid in full.
__________________
Aug 2010 Disc Herniations at L4/L5 and L5/S1
Natural Recovery with PT, Chiro, Pilates, Inversion
Dec 2012 Head on Car Accident
Feb 2013 DDD at L4/L5 and L5/S1
June 2013 Stem Cells at Centeno in Colorado
July 2013 2 level ADR with Clavel
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