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Old 03-02-2015, 02:50 AM
AKactivemom AKactivemom is offline
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Posts: 11
Question Considering 2 level ADR in Europe

Hi, I'm a 37 year old active mother, wife, and occupational therapist. My husband is a physical therapist. We have been researching relentlessly (mainly me and passing on info. to my husband) since my spine surgery (2 level ADR at L3/L4, L4/L5 or hybrid (ADR and fusion) was cancelled on Jan. 15, 2015 when the very final nurse caught that I had a possible nickel allergy (b/c I break out to cheap jewelry and rivets on waist of jeans) to the fact that the ProDisc might have nickel in it (0.03% as an alloy). I was NOT screened for metal allergies at the surgeon's office.

I had formal metal implant patch allergy testing 2 weeks ago and I have confirmed allergies to: Nickel (2+), Pallidium Chloride, Tungsten, & Silvre Nitrate (1+). The ProDisc is automatically out and so is the MobyDisc (all fda approved in the US lumbar ADR's have nickel is my understanding). The only lumbar ADR I have found compatible with my allergies is the M6 made by spinal kinetics which is not fda approved yet in the U.S. & there are not any clinical trials that will be started in the next three years (straight from a rep. at Spinal Kinetics two days ago) in the U.S. for the Lumbar spine. Dr. Bierstedt at the ONZ spine surgical group in Germany has reviewed my case & says I'm an excellent candidate for the 2 level ADR procedure. Dr. Bertagnoli primarily uses the Prodisc as far as I know so I have ruled him out.

Some people may have found this blog early on in their journey but I'm much farther along in this journey and ready to make a decision and been doing extensive research, pouring over approx. 40 research studies (PubMed, etc.). I've been trying conservative treatments for the past 3 years with minimal success and ever since May, 2014 (perhaps an annular tear? while working at my parents farm laboring to scrape the old buildings to prepare to paint them) I have chronic pain with bending, prolonged standing, sitting, and walking and my quality of life has been greatly affected and I have to take daily ibuprofen, e.s. tylenol, tramodyl, & muscle relaxers to manage the pain every day. In the US, the spine surgeon wants to do a 2 level spine fusion since I am not a candidate for the ADR b/c of my nickel allergy.

I am waiting on a 2nd spine surgeon's opinion on March 20th (in my home state, Alaska) and then I'll also be uploading my files and contacting Dr. Clavelle for a 2nd opinion in Europe. If you are wondering about the shape of my facet joints, there is not osteoarthritis noted on the MRI's or CT scans and I'm not a candidate for facet steroid injections b/c there is no noted problems there, they are said to be in good shape and Dr. Bierstedt says my lumbar lordosis curve is intact as well, although the MRI report says it is slightly straightened.

Any feedback/advice for me? Thanks so much, this is an amazing online community to be a part of. I have watched the ADR video.

My pain is considered to be discogenic and mechanical/axial and I have minimal (if any) nerve impingement.

Also, I have heard a couple people say on the discussion boards that 2 level ADR's are not paid for by insurance companies in the U.S. I just wanted to mention that I read that 2 level ADR's were approved starting in the fall of 2013/early 2014 and I was approved in January, 2015 for a 2 level ADR (prodisc) at L3-L5. The first request was denied but it was approved when my Spine surgeon's office requested a "peer review by a Dr. and consulted directly with a Dr." and then it was approved-my surgeon was pretty much shocked it was approved for two levels. WE have ModaHealth insurance & live in Alaska. Having said that, he told me not to count on a 2 level ADR b/c there was a good chance he might decide to do a fusion at L4/L5 depending on how my anatomy was and how much height I had in that disc space (I think he said).

Anyhow, I would like to upload a pix. of my MRI so everyone can see it but I can't figure out how to do that, can someone help me with that?
__________________
Manageable back-pain for 10 yrs. with flare-ups.
Chronic Pain since May, 2014.
MRI, X-ray, CT scan: May, 2014
Discography-Sept. 2014
L3/L4: Moderate-Severe DDD, annular tear, 3 leaks, reactive endplate changes, osteophytes, mod.height loss, no disc signal.
L4/L5: Mod.DDD, large annular tear, no disc signal. Posterior leak into spinal canal.
Metal Allergies: Nickel plus 3 others
Cancelled 2 level ADR or hybrid surgery -1/15/15
37 year old active mom
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  #2  
Old 03-02-2015, 03:33 AM
AKactivemom AKactivemom is offline
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Join Date: Feb 2015
Posts: 11
Default one more question to add to my LONG post!

I know this is a long post but with as busy as I am with my family, work, etc., I barely have time for this so here goes another question...
Re: Dr. Clavel at the Barcelona Spain Institute. I've heard excellent things about this Dr. as well and I plan to get a 2nd opinion from him (European 2nd opinion). My Liason, Ken Hiebert, to the ONZ spinesolutions group of Dr. Bierstedt said that Dr. Clavel is or was associated with Dr. Ritter-lang and then broke out on his own or branched out on his own (not sure exactly what he said here) BUT then I talked with another 2 level ADR cervical pt. and he said that Dr. Clavel used to be with the ONZ group until 2009 until he split out on his own. Can someone enlighten me as to how and whom Dr. Clavel is affiliated with or was? I know Sternum hospital and Dr. Ritter-lang have quite a bit of negative publicity and I'm trying to figure our who is who. Thank you.
__________________
Manageable back-pain for 10 yrs. with flare-ups.
Chronic Pain since May, 2014.
MRI, X-ray, CT scan: May, 2014
Discography-Sept. 2014
L3/L4: Moderate-Severe DDD, annular tear, 3 leaks, reactive endplate changes, osteophytes, mod.height loss, no disc signal.
L4/L5: Mod.DDD, large annular tear, no disc signal. Posterior leak into spinal canal.
Metal Allergies: Nickel plus 3 others
Cancelled 2 level ADR or hybrid surgery -1/15/15
37 year old active mom
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  #3  
Old 03-02-2015, 07:51 AM
NJ Gene NJ Gene is offline
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Join Date: Feb 2013
Posts: 376
Default

Ken, from ONZ, works for Dr. Bierstedt. Many of Dr. Bierstedt's team members are former employees/patients of Dr. Ritter-Lang. They are correct, at least from what I've heard, that Dr. Ritter-Lang and Stenum are not good. However, they will say anything to prevent you from going to a surgeon outside of ONZ. Let's face it, they are sales people too.

Dr. Clavel is only associated with Dr. Bierstedt for marketing purposes. If you tried to get an appointment with Dr. Clavel through Dr. Ritter-Lang's website, they would push you to go with Dr. Ritter-Lang. Dr. Clavel has his own site. Here is a link to it: Barcelona Spine Center

Btw, I believe the physicians at ONZ are very good. However, IMO, it is very shady of Ken and the team leaders to say that Dr. Clavel is associated with Dr. Ritter-Lang, when he has nothing to do with him except for appearing on his website. These people (i.e. Ken, Malte, Kelli) on the ONZ team are more closely related to Ritter-Lang and Stenum than Dr. Clavel ever was or will be.

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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  #4  
Old 03-02-2015, 03:06 PM
Boxer78 Boxer78 is offline
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Posts: 393
Default Adr

i was told by a patient that he had a 4 level done by ritter Lang in Spain with the assistance of clavel . I see nothing wrong w these guys sharing techniques etc I also understand clavel studied at Hopkins with neurosurgeon dr Lee Dellon.
__________________
L5 S 1 herniation burning feet groin pain. Undisgnosed for months finally getting answers.
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  #5  
Old 03-02-2015, 08:02 PM
Jerry5 Jerry5 is offline
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Join Date: May 2013
Posts: 363
Default Recommend, not berate.

Hello, First, sorry to see you here, but now that you are, hope you can find some answers.

The FDA in the USA is in the hands of a few big corporate types, much like the Internet will be if the 'Net Neutrality' goes through.

That said, I could recommend, Ilherhaus and Bierstedt, but I could not NOT recommend Ritter Lang, I did talk to his Rep here in the USA, and had a favorable talk with him.

If I had one piece of advice, get a good MRI, and have at least TWO evaluations from a Doctor in Europe, and another, maybe two more in the USA.

If the L45 is bad, better take a look at the L51.

All the Best,
__________________
Jerry, Somewhere Ohio

L2-3 herniation, two days before Thanksgiving, 2012, Discectomy/Laminectomy, 3/13 Numbness in the right leg, lateral femoral, gone, July 10, 2014 L45 M6 ADR, July 15 PLIF L5-S1, Not able to access L51 Anterior.
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  #6  
Old 03-08-2015, 04:52 AM
AKactivemom AKactivemom is offline
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Join Date: Feb 2015
Posts: 11
Red face Thanks for your comments

I appreciate your comments. My L5/S1 has a good disc signal and looks good on the MRI which is why they didn't test it on the provocative discography (I think).The surgeon thinks my L3/L4 is in such bad shape from an old trauma 15 to 20 yrs. ago that then began to accelerate the DDD at a more rapid rate & then the L4/5 probably took up the slack right under it but I might also have a genetic disposition as well, hard to know.
Anyways, thanks for all your feedback. Take care and I'll keep everyone posted as to how my 2nd spine surgeon opinion (in the US) goes in the next two weeks and I'll also be trying to connect online with Dr. Clavel from Spain in the meantime.
Thanks!
__________________
Manageable back-pain for 10 yrs. with flare-ups.
Chronic Pain since May, 2014.
MRI, X-ray, CT scan: May, 2014
Discography-Sept. 2014
L3/L4: Moderate-Severe DDD, annular tear, 3 leaks, reactive endplate changes, osteophytes, mod.height loss, no disc signal.
L4/L5: Mod.DDD, large annular tear, no disc signal. Posterior leak into spinal canal.
Metal Allergies: Nickel plus 3 others
Cancelled 2 level ADR or hybrid surgery -1/15/15
37 year old active mom
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  #7  
Old 03-08-2015, 04:53 AM
AKactivemom AKactivemom is offline
Junior Member
 
Join Date: Feb 2015
Posts: 11
Default

I completely agree. Makes sense to me.
__________________
Manageable back-pain for 10 yrs. with flare-ups.
Chronic Pain since May, 2014.
MRI, X-ray, CT scan: May, 2014
Discography-Sept. 2014
L3/L4: Moderate-Severe DDD, annular tear, 3 leaks, reactive endplate changes, osteophytes, mod.height loss, no disc signal.
L4/L5: Mod.DDD, large annular tear, no disc signal. Posterior leak into spinal canal.
Metal Allergies: Nickel plus 3 others
Cancelled 2 level ADR or hybrid surgery -1/15/15
37 year old active mom
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  #8  
Old 03-08-2015, 04:57 AM
AKactivemom AKactivemom is offline
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Join Date: Feb 2015
Posts: 11
Default

When I asked Ken (liason from ONZ group) directly via email, he ended up telling me that Dr. Clavel was never affiliated with the ONZ grop and that he wasn't sure if Dr. Clavel was affiliated with Dr Ritter-lang but he had "heard" he might be...Oh well, I got an excellent feeling from Dr. Bierstedt on the phone so I don't think I'll hold it against Ken if he wants me to stick with his group I guess.
Politics, politics, wherever you go, even across the ocean.
__________________
Manageable back-pain for 10 yrs. with flare-ups.
Chronic Pain since May, 2014.
MRI, X-ray, CT scan: May, 2014
Discography-Sept. 2014
L3/L4: Moderate-Severe DDD, annular tear, 3 leaks, reactive endplate changes, osteophytes, mod.height loss, no disc signal.
L4/L5: Mod.DDD, large annular tear, no disc signal. Posterior leak into spinal canal.
Metal Allergies: Nickel plus 3 others
Cancelled 2 level ADR or hybrid surgery -1/15/15
37 year old active mom
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  #9  
Old 03-08-2015, 01:37 PM
Cynlite's Avatar
Cynlite Cynlite is offline
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Join Date: Mar 2015
Posts: 666
Default Following the same path

I'm so sorry you had to cancel your ADR in the states! I can imagine how frustrating that must have been

Since we are following the same path (I think I'm just a little behind you,) I thought I would introduce myself. I'm a 50 plus year old looking at Europe for cervical ADR (probably two levels) because I don't think I can wait through a lengthy appeal process with the insurance company. Also, Europe is so far ahead of the U.S., I feel like if I'm going to have surgery again, I want to make sure I give myself the best shot at a recovery. I haven't ruled out the U.S. yet but, am not confident the surgeons will tell me what I want to hear. I am adamantly against fusion.

In an email last week, Malte said that Dr. Bierstedt stopped using the ProDisc "some 8 years ago." I just got my package to them on Friday and am waiting for a consult with the surgeon still.

The other surgeons I have on my list to contact now are Dr. Clavel (Spain), Dr. Dare (UK) and Dr. Zeegers (Germany). I contacted Dr. Bertagnoli's U.S. liaison but, have ruled them out since he is using a Prodisc-C Novas. I didn't feel like they would be a good fit for me. I'm not sure if I have metal allergies so, will have to get that checked. Sorry you had to be the one to bring that to my attention...but, THANK YOU! I'm extremely sensitive to medications, anesthesia and adhesives so, it's definitely worth checking out!

One of my questions for the surgeons is re data on the HO rate for the M6-C as I have not found any. Perhaps it's too new? Here is some information I have in my notes:
Heterotopic Ossification:
http://dev-journals.lww.com/spinejou...otopic.11.aspx
Results. Each prosthesis group included patients as follows: Bryan disc, 81 patients; Mobi-C, 61 patients; and ProDisc-C, 28 patients. Overall HO rate was 40.6% (69 of 170 patients). Each HO occurrence rate by prosthesis was as follows:
Bryan disc group, 21.0%;
Mobi-C group, 52.5%;
ProDisc-C group, 71.4%.
The surgeons are using wax or something like that now to help mitigate the problem.

Romakis seems to also be at about the same place we are in this process. I'm following your posts and hoping you both find your solutions soon!
__________________
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

Last edited by Cynlite; 03-09-2015 at 02:05 AM.
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  #10  
Old 03-09-2015, 03:43 AM
AKactivemom AKactivemom is offline
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Posts: 11
Cool Heterotopic Ossification in Cervical ADR surgeries

Wow! I just read that abstract from the journal "Spine" you gave the link to and that is fascinating...I am not very familiar with the cervical ADR research as I've focused primarily on the lumbar spine. Have you read much on the HO in the lumbar spine? I would agree about Dr. Bertagnoli, b/c he fathered the prodisc, I understand he primarily puts that in patients and so I have ruled him out as well b/c of my metal allergies. I would highly recommend!! getting a patch allergy test to test for allergies if you a highly sensitive person (if it was me and I had to do this all over again, I would do it no matter what, it only was about $300 out of pocket with my 20% co-pay to find out what I can and can't tolerate in my body). My surgery was probably going to cost about $150k US (with insurance paying most of it) so somehow $300 doesn't seem like much compared to that...not to mention the prodisc can be VERY difficult I've read to remove from the spine or Dr. Bierstedt said even NOT possible b/c of it wide keel, etc. which doesn't bode well if you are allergic to something in it and its been anchored in your spine....Let me know how your consult goes with the ONZ surgeons if you will. I also need to make contact with Dr. Clavel but haven't heard back via email yet, I guess I need to call. I heard from another forum post that Dr. Zeegers is on the edge of retirement but I have no idea, maybe he works part-time now, I've heard he's also very good. I can tell you that I have emailed with 2 patients that have had the cervical spine ADR and also been able to talk with one lady that is 43 and also lives in Alaska (and had nickel allergies) who went to Germany for a 2 level ADR (cervical) with the ONZ group and all 3 of them have given me excellent reports on the ONZ group. One thing you may want to ask when you call these places is if they have a rehabilitation/massage/etc component following your surgery/hospital stay. One of the primary reasons that the lady I talked with in Alaska chose Dr. B___ over Dr. Clavel in Spain was b/c of Medicos, the rehab facility that is all paid for (one week) with your two week package and includes PT, OT, a Rehabilitation Doctor, wound care/check-ups, oh and massage therapy too. Keep me posted and yes it does seem Romakis is about at the same decision making process we are..nice to know there are others out there. This is hard time for me and I CAN'T WAIT to make a decision on WHEN I'm going. My 2nd opinion in the US March 20th and I hope to decide that following weekend where I'm headed. Also, did you know that Spinal Kinetics has a clinical trial right now on the M6 for the cervical spine but I'm not sure if its only single level.
__________________
Manageable back-pain for 10 yrs. with flare-ups.
Chronic Pain since May, 2014.
MRI, X-ray, CT scan: May, 2014
Discography-Sept. 2014
L3/L4: Moderate-Severe DDD, annular tear, 3 leaks, reactive endplate changes, osteophytes, mod.height loss, no disc signal.
L4/L5: Mod.DDD, large annular tear, no disc signal. Posterior leak into spinal canal.
Metal Allergies: Nickel plus 3 others
Cancelled 2 level ADR or hybrid surgery -1/15/15
37 year old active mom
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