Germany & Dr. Bierstedt for Cervical ADR?
 

I'm a 50 plus year old female and have been in pain for 9 years now. I have tried many ways to get my health and life back. My surgeries are all listed below. I lost a thriving career, all my sports and my social life. I'm sadly on disability now. All of this is the result of three car accidents when I was younger and time taking its toll. I used to be an avid water and snow skier too so, I'm sure a few well placed falls didn't help my situation either. I was very active and traveled a lot until my neck slowed me down. I spend most of my time at home now trying to manage pain. In the last three months I've been losing the ability to walk and stand again so, I have been SLOWLY moving my way through the U.S. medical system and finally have an appointment with a top surgeon at the Barrow Institute on 3/23/15. I already anticipate that my health insurance will turn me down and demand that I have fusion. I know I'll have a long appeals process in hopes of getting them to approve the ADR surgery. I expect to find out that I need 2 to 3 levels fixed because the surgeons wanted to fuse two levels back in 2007. If it's 3 levels, well, that isn't going to happen in the U.S.

I am really leaning towards the M6-C disc which is still in Trials here in the U.S. I tried to get in but, my prior surgeries disqualified me. So, after reviewing much information on this site (thank you everyone for your contributions!!!), I've been in contact with Dr. Bierstedt's office (Malte has been great so thanks for steering me his direction) and also Dr. Bertagnoli's office (both German surgeons.) I'm waiting to hear back from Dr. Bierstedt regarding my prognosis. I'm really leaning towards Dr. Bierstedt and have only had an initial contact with Dr. Bertagnoli's U.S. liaison. The other surgeon that caught my attention was Dr. Clavel but, it seemed like there were some questions about his practice. I can't remember exactly so, will need to go back and research him again. Anyway, if anyone has any information, suggestions or experience to contribute in helping me figure out this puzzle, I sure would appreciate it! I'm trying to make a decision asap before I do irreversible damage to my spinal cord. The changes in my symptoms the last three months have me pretty rattled. Thanks so much!

Hello and Welcome,

There are some questions you can find on the web about Dr. Bierstedt as well, but Dr. Clavel seems to have a very solid reputation. I personally found many more negative references about Dr. Bertagnoli. I have personally narrowed my selection to two: Dr. Bierstedt and Dr. Clavel. This is my 5c only.

If you need a 3rd option. Dr Zeegers (also in germany) is really good.

Dr. Willem Zeegers – Artificial Disc Replacement | World pioneer in treating back and neck pain

Cheers,

Karger

Thank you so much for your input!

Thanks for the link! I'll look into him.

Second Guessing my appointment at Barrow Institute
 

It was such a pain getting the darn appointment. It took several weeks for the surgeon to review my file and accept me as a patient. I picked the surgeon based on his great reviews locally and because he does ADR. Since then and lots of hours of research coming up the learning curve, I have learned that the Mobi-C is a better disc than the Pro-Disc and there is only one surgeon at Barrow listed on the Mobi-C site. It's not the one I have my appointment with on the 23rd! So, I think I should call on Monday and may have to start the process over again which is just going to delay me further. I also found out since I scheduled with the one surgeon that if I want to see another surgeon at the Barrow Institute, HE would have to refer me over so getting a 2nd opinion at Barrow is probably not going to work out and 1/2 the neurosurgeons in my network work for Barrow. Talk about having all my eggs in one basket. Hopefully, by some miracle, the surgeon I have the appointment with is familiar with and uses the Mobi-C! Hopefully, I can find that out Monday.

I wish my introductory post hadn't been moved from New Member to the International Assistance category because I'm looking at both options, the U.S. and internationally! Do I need to start a new post elsewhere or continue this thread? I'm not sure how things work around here.

Reading all the posts from people that have had unsuccessful ADR surgery also has me a bit rattled. I'm wondering if I'm expecting too much from neck surgery again. I had all but given up hope of ever having a normal life until I learned about ADR as an option. It just seems like having a fusion surgery would make things worse. It just feels wrong to me and barbaric. I know that the odds of getting back to my old life back 100% are unlikely but, is 80% being too optimistic? Frustrated tonight :( Is vocalizing my frustrations allowed here?

FYI Romakis
 

Not quite sure how to link people into threads yet. I just posted some information you might be interested in reading.

https://www.adrsupport.org/forums/f6...45/#post109613


Note to information in post above: I believe that surgery in the UK will be more expensive than Germany or Spain so, Dr. Dare will fall to the bottom of my list. He took over some of the patients for Dr. Nick Boeree who sadly passed in 2011 and was considered one of UK's finest.

Venting frustrations is allowed I hope :). May I ask which levels you have a problem with?

Multi Level Breakdown
 

Ya, last night wasn't good for me emotionally so, I just vented online. It doesn't happen too often. The steroid shots I got jabbed with the day before to release the muscle spasms covering my whole neck and back were getting to me. I'm all better now :wiggle: I think the spasms are releasing. I'll see if they rear their uglies when I start trying to get things done today.

To answer your question, I think the only place I don't have issues it C2-C3. I have narrowing at C3-C4 with a 2.4mm osteophyte; a broad based bulge at C4-C5; a 4.5mm osteophyte at C5-C6 and the coup de grace at C6-C7 is an auto fusion after two foraminotomy surgeries to fix that level. I haven't seen a surgeon lately but, I'm pretty sure multi-level something is in my future.

Fortunately, my Lumbar spine is normal for my age last I checked and my thoracic spine is not that bad although the surgeon poked around there thinking he could fix my leg problems. He didn't. :( I haven't had recent MRI's of either. The last were in 2007 and 2008 respectively.

My prospective surgeon list to date
 

Surgeon List:

1. Dr. Randall Porter at Barrow Institute; apt. 3/23/15 - US; or change this week to Dr. Francisco Ponce (Mobi-C Training) also at Barrow Institute in Phoenix
2. Arizona Brain & Spine (heard nothing back yet)
3. Dr. Bierstedt - Germany (ONZ Spine); full package delivered, waiting for response
4. Dr. Clavel (Barcelona Spain Institute)
5. Dr. Willem Zeegers - Germany
6. Dr. Chris Dare - UK (More expensive than Germany or Spain)

Cynlite,

Here are a few more U.S. doctors you might want to add to your list:

1. Dr Wohns in Seattle
2. Dr. Vikas Patel in Denver.
3. Dr. Blumenthal at TBI in Plano, TX.
4. Dr. Daniel Peterson at Austin Brain and Spine.

They all use the Mobi-C disc. I'm looking at some of the same people myself.

Best of luck to you!!

Gene

Thank you for your list of doctors!

Calls with the European doctors
 

NJ Gene, Romakis & AKactivemom, I just wanted to let you know that I spoke to Dr. Bierstedt today and feel very good about the prospects of going to Germany for surgery. I agreed with his diagnosis and am now waiting to see what the surgeon locally has to say in 10 days. He advises that I replace two cervical discs with the M6-C. My levels are C5-C6 and C3-C4. The M6-C is better technology for protecting the facet joints in the long run so, that's something to consider even though the FDA has approved the two level Mobi-C in our country. I also believe the 6 day hospital stay to make sure all went well with the surgery along with the additional 7 day PT program is pretty important to retraining the muscles to help avoid pain from the rest of the body adjusting to the implants. Having gone through two neck surgeries from hell and being on my own at home is not something I want to re-experience. He's done over 1000 of these implants so, I feel comfortable with his experience. I am still in the investigative process but, he's definitely of interest to me at this point.

I also spoke to Dr. Zeegers yesterday from the Netherlands. What a fascinating man! I am considering spending $900 U.S. to have him give me a consult on my condition since my situation is more complex. He led the forefront in ADR surgery and is a high analytic plus, very compassionate person. I believe he is both a neurologist and a neurosurgeon. I still have questions regarding where he does surgery and what his program would involve so, I have an email out to him with some more questions.
Experience ADR | Dr. Willem Zeegers – Artificial Disc Replacement

Anyway, just wanted to give you all an update.

Today sucked with a huge migraine so, I ended up sleeping part of it. I sure am hopeful that surgery will be the answer to this constant day to day struggle with pain. Hope everyone else had a much better day than me! Be well! :wiggle:

I have requested a second opinion from Dr. Zeegers in the Netherlands. His approach is so much more inclusive than any other doctor I have seen that I think it is worth paying for his consultation. (Correction, he is an Orthopedic Surgeon not a Neurosurgeon as I previously posted.) He has requested so much history that in going through everything, I have already discovered things on my reports that I missed and my U.S. doctors did not bring to my attention. Dr. Zeegers has brought up questions that no doctor has ever brought up. This is quite the experience! So far, I have heard that my spinal cord has not been damaged and for that I am very grateful. Perhaps there is a light at the end of this tunnel.

One more week until I finally have my appointment at the Barrow Institute. It will be interesting to see what the surgeon there has to say. I'm really glad that I reached out to the surgeons in Europe because they are so much easier to work with than the U.S. surgeons IMO. Everything is wait, wait, wait here and often no answers unless you get checked into a top notch hospital and have great insurance.

My symptoms continue to get worse so this can not happen fast enough. I spent the last two days in bed with a blinding migraine headache. Unfortunately, I think I'm at least 4 - 6 weeks out from having a surgery so I'll just have to deal with what happens and hope I don't get too much worse before I make a decision on who will operate on me. I sure know I can't wait a year for my insurance company and the appeal process. Perhaps they will have pity on me and approve the two level cervical disc replacement....not holding my breath.

Cynlite, is Europe still a possibility for you? You say you're at least 6 weeks away from surgery. I got my evaluation from Dr. Bierstedt about 5 days ago. He could accommodate me as early as March 24th. However, I was not impressed with his evaluation. While the M6 and Mobi-C are great devices, they are not for everyone. Ideally it's best to be examined in person. If you can't get examined in person, a detailed remote one like the one you had with Dr. Zeegers sounds the best.

Yes, Europe is still a strong possibility for me; however, I have an appt with a US surgeon on the 23rd and I want to see what he has to say.

I spoke to Dr. Bierstedt for about 45 minutes and felt confident in his diagnosis for my surgery. He didn't evaluate me over the phone however. I also spoke to Dr. Zeegers but, we are at the beginning still. I'm in the process of sending him my information which is quite lengthy. He asks a lot of questions and that does build confidence in him.

I'm taking this a day at a time still. I can't leave for another five weeks anyway because I'm waiting for my passport to be renewed. I just know that I am not going to wait for a lengthy fight with my insurance company. I'm in too much pain to wait.

I think the M6-C is one of the best implants on the market. Dr B said it protects the facet joints better. I like the fact that it has titanium end plates. I already have titanium screws in me so I don't have to worry about an issue with the metal.

A lot of great thoughts, here.

May I ask what about Dr. B's evaluation didn't impress you?

You can see his evaluation on Post 28 of my thread "Need some suggestions". I did see a U.S. surgeon in Allentown, PA recently who felt that neither the M6 nor Mobi-C would be good for me since I have 2 levels of fusion at C3/C5 and would need the proper device at C5/C6 to stop the domino effect. There's extra pressure at that level because of the adjacent fusion. It's important to know that I also had two minimally invasive procedures at level C6/C7 which I'm having problems with again.

With any artificial disc, there is a risk of autofusion. Bone ultimately grows over and around artificial disc making it worthless. This surgeon felt that ProDisc or Prestige would be best in my case to reduce liklihood of this. He and other (even ones who don't do ADR) surgeons felt a CT Scan was also necessary to get a better look at level C6/C7. Since I have hardware in my neck from the fusion, it can distort some of the MRI images at that level whereas a CT Scan would not.

Dr. Bierstedt felt that no CT Scan was necessary, that when they cut me open they would see what needs to be done at C6/C7 and decide then. They also recommended the M6, which is contrary to what my surgeon said here. I felt my surgeon had good reason not to recommend M6 nor Mobi-C. I get the impression that ONZ has the attitude "M6 fits all."

I don't want to knock Dr. Bierstedt nor the M6. Many patients (quite a few on this board) have done well with him. Note that what I'm about to say has anything to do with Dr. Bierstedt or his medical team, but about his U.S. liaisons. In my opinion they are clowns. Several of them are former patients/employees of Dr. Ritter-Lang, who has a very bad reputation on this forum. These people will not volunteer any of this info. Kelli was a former patient of Ritter-Lang who happened to be "lucky". Malte was a former employee or Ritter-Lang as well. I don't know if Ken was associated with him.

The final straw in his evaluation was saying that he gives me no assurance that 2 level ADR with M6 will help existing symptoms at that C6/C7 level. However he recommends I get this anyway to preserve motion and prevent further damage.

I hope I haven't bored you to death.

Gene

Hi NJ,

Yes I knew that Dr Bierstedt and Malte had connections with R-L. And that they had a fundamently disagreement with their practices. BTW Dr. Clavel also had connections with R-L.

I went with Dr. Biersted based upon a number of factors.

BTW ... If you can find a doctor that will guarantee success of your back surgery GO WITH IT!

They offer no guarantees.

http://www.germandiscreplacement.com/

Boris,

I know there are no guarantees. However, they are telling me flat out that they have doubts about surgery helping me with my current symptoms. Yet, they're suggesting surgery anyway to prevent my issues from getting worse.

Gene

not the impression I get
 

They also use the Mobi-C at ONZ, so not just the M6-C

A very interesting doctorate thesis is linked to this post at the bottom. It compares many of the discs available and discusses 6 degrees of range of motion while also needing limitations in movement to mimic what happens in the the body. The Mobi-C does not limit the movement while the M6-C does limit the movement. This concerns me as the FDA has only approved the Mobi-C for two levels in the U.S. I will speak to a surgeon about this Monday but, I suspect that any surgeon I speak to will never be able to give me a completely unbiased answer because he will be biased towards the devices he has implanted. It seems in general, the surgeon's goal is for a successful surgery more than eliminating pain in the patient. I can't blame them for this because that is what they are trained to do but, hopefully, I will find the right surgeon who can diagnose the source of the pain too!

I spoke to the surgeon's office that completed 6 minimally invasive surgeries on me between 2006 - 2010 yesterday. They still warned me against ADR and think I should come back to them to avoid a more invasive surgery. My response was well you had six chances and I'm still no better than I was before the surgeries. I've lost 9 years of my life to pain. At best, the surgeries only reduced my pain a little for a short period of time and then the cervical spine degenerated more and back came all the chronic issues plus more.

There is no guarantee that I will be in less pain after surgery. All I can do is look at the statistics and weigh the opinion of the surgeon. The first surgeon I saw back in 2006 recommended a two level fusion but, stated he did not think it would alleviate my symptoms. I very much appreciated his honesty. I did not get the fusion. Dr. Bierstedt did not give me a caveat in his quote and opinion re surgery regarding pain as NJ Gene had but, when I spoke to him on the phone about my leg pain and weakness, he could not say that his surgery would fix these problems. Again, I appreciated his honesty. I am very much aware that the pain in my lower body is an atypical symptom so, it may or may not be related to my cervical spine. Nevertheless, I do believe that my cervical spine needs surgery. I intend to explore all options with several surgeons before I decide what to do so, I hopefully do not repeat my experience of having a surgery that does not improve my condition. It's hard to not rush into surgery when living in constant pain, with hope that the chronic pain will be alleviated but, I'm not going to give into the pain and make that mistake. I remind myself everyday that my mind and will power are stronger than my body and the pain I'm experiencing.

http://people.bath.ac.uk/en1tph/thesis.pdf

Cynlite, I couldn't agree with you more on the issue of pain. While I know there is no such thing as a guarantee, I would like to think that if I'm going under the knife, there is a reasonable chance that I will get some degree of relief. I also respect Dr. Bierstedt for his honesty on his disclaimer that ADR might not help my symptoms. I don't necessarily agree with his assessment that I should get ADR anyway (M6 at 2 levels) to prevent further degeneration.

It might be of interest to note that Dr. Bertagnoli gave me a recommendation that I only need just one level, C5/C6, done. It wasn't quite clear what device he would use, but he also made mention of removing the hardware in my neck from my previous fusion. To me that sounds reasonable, because the titanium plate really doesn't do anything once the fusion has taken place. It's just a foreign body that is generally left inside most people, because it doesn't make sense to do surgery solely for the purpose of removing it.

NJ Gene, here are my notes from talking to his US representative:

"Prof. Dr. Bertagnoli has replaced M6's (poorly placed and sized, not failed devices) with Prodisc C Novas. Dr. Rudolf Bertagnoli, the co-inventor of the Prodisc artificial disc; at his private clinic in Straubing, Germany (outside of Munich)"

I didn't move forward getting a consult from him because I favor the M6-C right now for reasons already stated. Since Dr. Bertagnoli is a co-inventor of Pro-Disc, I'll bet that is what he uses on the Lumbar too.

what about heterotopic ossification?
 

First off your US surgeon can't get access to the M6-C and did they not tell you that Pro-Disc has higher rates of HO and Mobi-C has had it too...At least Bierstedt can use an M6 or the Mobi. Once he's in there he has options. It doesn't sound like you US doc does....Just food for thought.

Cheryl, I have not been able to find any data on the M6-C re HO. Have you found any? I posted the HO rates in an earlier post for the other discs. Yesterday, I was reading a report about how the studies for HO may not be large enough for the data to have a great deal of meaning. I'll see if I can find it.

I see a surgeon on Monday and will talk to him about the Mobi-C data. Such a puzzle.

see some links below
 

http://orthopedicstemcellinstitute.c...tion_Techy.pdf

http://www.medscape.com/viewarticle/742005_5

https://www.isass.org/pdf/sas11/2-We...ication/57.pdf

many others show up on serach engines and Harrison has a thread on it too.

U.S. Docs have quite a few options. They just don't have the ability to use the M6 yet. Btw, just because I've ruled out Bierstedt doesn't mean I've ruled out of other surgeons in Europe. I was impressed with Dr. Bertagnoli, who told me I only needed one level of ADR when other surgeons (both in the U.S. and Europe) suggested that I need two. I have no expectation of insurance covering this. If it does, it will be a pleasant surprise.

Cynlite, this looks like a brochure for the M6 with some HO info!

Thank you Cheryl! The first link is helpful.

Thanks Dema! I found this today also which may be of help to people. It is from 2012 and discusses the Pros and Cons of Cervical Disc Anthroplasty.

Cervical disc arthroplasty: Pros and cons Moatz B, Tortolani P J - Surg Neurol Int

Hi NJ,

It's good that you are narrowing your doctor choices, it is part of the process.
Best wishes.

There has been quite a lengthy and productive conversation going on here, and I thought I may just chime in for a moment.

The most important factor in making your decision is not only the research you have conducted, but the "gut" feeling you have when you feel you have made the right decision. All of the surgeons you have inquired about are highly qualified and experienced in multi-level ADR surgical placements, unlike the US. Like you, I needed to have intervention on several levels and fusion was my only option. I have a relative that opted for this situation and is facing paralysis unfortunately - only due to continued degenerative disease forced upon the adjacent levels. In some cases, it really is the only option, but why stop there if there are possibilities of repair and regaining mobility.

My experience: I had contacted Dr. Bertagnoli due to my initial research and his extensive and lengthy expertise in ADR placement. I didn't know at the time that he had a business relationship with ProDisc; making it a conflict to use M6 (ProDisc has several patent lawsuits against M6; mostly as a deterent for FDA approval - these lawsuits have been determined unfounded and dismissed). In my opinion, the M6 was the only device I would have considered.

Post Surgery: I have 3 levels replaced from C4-C7. Other than my scar, no one can tell that I have "metal" parts. I don't feel any different; other than normal now. I have resumed all my loved sports once again; even did a cartwheel when my students all passed their math test - I am in my 50's.
In regard to insurance coverage, Dr. Bierstedt had supplied me with detailed information regarding his exam, determination of intervention, and prognosis. I submitted everything through my insurance and within 4/5 months, I was reimbursed - COMPLETELY. The travel expenses were a medical deduction on my tax return. It can be done!

My advice is to make sure you choose a surgeon who is free to make the best possible choice for YOU. You should consider someone who has the ability to use the best device that will give you the best surgical outcome, and not confined by political/financial regulations (not necessarily healthful).
An M6 can be replaced if a failure was to occur. This is not the case with the ProDisc. Fusion is the only option after that.

Please...no offense to anyone who has had success with other options. I only have the M6 and I feel it was a Godsend that I had discovered it; along with this support group. I am a success story and grateful everyday to have my life back. I can't help but share my compelling urge to praise not only the device, but Dr. Bierstedt, as well for giving me back my life.

Laura, thank you for chiming in and sharing your experience! I so appreciate a well thought out post from someone who has also had to make this decision and done the research. Also, I just want to say how sorry I am for your relative and his/her fusion failure. I've been avoiding the fusion surgery for many years and am so hopeful that I am a success story with ADR. Sadly, I read or hear about so many fusion failures all the time. I wonder how many are truly successful? My gut has always told me that fusion was not the way to go for me.

I'm amazed that you got your insurance to pay for your surgery! If you don't mind sharing, which insurance company did this for you? I believe you stated that your insurance would only cover fusion in the U.S. Is that correct?

I think that surgery in Europe may end up winning this battle in my head mostly because of the surgeons' experience there and secondly because of the technology available there. (I'm meeting with a top notch neurosurgeon on Monday in the U.S. so, I'll see how I feel after that experience. I'm not highly optimistic based on my past experience but, I'll see.) I'm wondering, did you pay for business class air fare to avoid the discomfort of flying? My flight would be around 16 hours to Germany and that just sounds like misery to me. I've already flown many four hour domestic flights after surgery and that was not very comfortable. People kept bumping into me and that was pretty unnerving since I was so protective of my body at the time. It's so hard to get comfortable in an airline seat. The difference is that in my case it was several days after surgery whereas with Dr. Bierstedt, it would be two weeks later. Deciding to go to Europe is a huge financial cost but, really how do you put a price on being out of pain and the chance of living life again?

Initially, I thought the M6-C was the best cervical device out there. Now, I'm trying to sort out if the Mobi-C is equally as good. The M6-C is self restraining and therefore protects the facet joints better over time. The Mobi-C may have a lower HO rate. (Perhaps I'm just reaching because of insurance reasons.) That is the question I'm trying to get sorted out in my mind. There is a slim chance I can get my insurance to cover the Mobi-C here in the U.S. so, if it is as good or better in my body, there is that to consider. Lastly, the Mobi-C does not have a keel whereas the M6-C does have a keel. If a revision surgery is necessary, it is easier if the disc does not have a keel.

Fortunately, I am getting an opinion for Dr. Zeegers who uses both devices. In the end, I think I'll have to heavily lean on the surgeon's advice because getting a good fit is very important. I believe Dr. Bierstedt uses the M6-C more often than not and it is what he has recommended for me. I'm curious to find out what the other two surgeons recommend.

Thanks again for your thoughts!


Note re abstracts on HO. The authors discuss "Grade" and they discuss "Level." I cannot figure out what the differences are between these categories so, the numbers are not an apples to apples comparison. It is also unclear if using an NSAID after the surgery will help to stop the HO process.

Data "Dema" shared from Kinetics re HO at 24 months...see his prior post dated 3/20/2015:

Beaurain,
J. et al
Intermediate clinical and radiological results of
cervical TDR (Mobi-C) with up to 2 years follow-up.
Eur Spine J, 5/12/09
85 24 mo. 3.9% 7.9%
Quan, G. et
al
Eight-Year Clinical & Radiological Follow-up of the
Bryan Cervical Disc Arthroplasty. Spine, Vol. 36 No.
8, 2011
27 96 mo. 11% 22%
Combined M6-C Pilot & Registry: Germany, USA & Mexico
(Independent qualitative analysis by Medical Metrics, Houston, TX, USA)
122 24 mo. 14.6% 4.1%

Information from the Abstract that Cheryl posted confuses the understanding of HO rates even further:
http://orthopedicstemcellinstitute.c...tion_Techy.pdf

Results: Class I data from older FDA IDE studies indicates the incidence of grade- 3 and 4 HO:

1. in ProDisc-C to be 7% at 24 month and Level 4 only 8% at 48-month follow-up, 4% of any HO in Kineflex-C at 24 months.

2. The Bryan trial did not report on HO. PCM had 4.4% incidence of grade-3 or 4 HO at 24 month followup.

3. Prestige had zero anterior HO at 2 and 5 year follow-up.. Newer class I studies show a much higher rate of HO after CADR.

4. The Secure-C had 19.2% of grade 3 and 4 HO at 24 months.

5. The Mobi-C trial showed a 15.9% incidence of level 3 and 4 HO at 24 months.

6. A review of all available class II data (also newer studies) indicates ProDisc-C with 63% of either grade 3 or 4 HO at 4 years.

7. Mobi-C disc at two year FU: grade 3 – 3%, 4 – 6%;

8. M6 at two-year follow-up an HO incidence of 48%;

9. Bryan disc at one-year follow-up 17.8% of patients had some type of HO and 6.7 had grade-3 or 4.

10. One class III paper reported a comparison of three CADR with an HO incidence of Bryan disc 21%, Mobi-C 52.5% and ProDisc-C 71.4%

Laura, thanks for your insightful post, and noticed that you had 3 ADR's C4/C7, so did you replace the fusion at C5-C6 with an ADR?

Cynlite & Laura, given the similar cervical areas to me, please advise if you had/have pain in the back of the trapezius/shoulder (area where you shrug the shoulder)! My MRI shows 3 disc problems (C3-C6) with 2 levels (C4-C6) being a little worse than C3-C4. Some of the specialist are recommending 2 levels ADR, while some recommend 3 levels, and of course some say that surgery will not help me! So wanted to know which level is most likely causing the pain in that area, to help determine if I should do all 3 levels or just 2 levels!

Thanks & wish Cynlite will be providing good success posts like Laura soon.
Dema & Raouf

Dear Dema, oh how I wish I had answers for you. I think in the end, you have to go with that voice in your head that tells you what is right for you and go with the surgeon you trust. After that you have to just put your care in their hands and pray for the best.

There is the mechanical aspect to surgery and the creative aspect. I want a surgeon that can handle the unexpected and creatively solve the problems he encounters. When surgeons look at our images I have been told they are getting about 50 percent of the picture. I think that explains why we get different answers from them. I have tried hard to figure out what is causing my issues by how I responded to my prior treatments. I too am making an educated guess but, it's still a guess. I'm at a point where not having surgery is not an option so, I will move forward to a logical solution for me. With each additional level I think we add more risk and from my experience more pain in the recovery. I'd speak to all the surgeons and get their input on what would happen if you went with just two and ask them all about going with three levels. Record your conversations with them so you can listen to their answers. I think that will help you to figure out your puzzle.

Thanks Cynlite for the quick response, and pray that we all will be guided to the right course of treatment, and get significant pain relief and gain our lives back.
Best of luck,
Dema

Insurance: I have BlueCrossBlueShield through a Union. Initially I was told that this was not a covered surgical intervention and was denied twice. I submitted all of my medical information, bills, wired funds, and statements from the US doctors regarding my condition as well as Dr. Bierstedt. I submitted all of the information and made several phone calls to inquire if they needed more information - I literally became a nuisance. From a business standpoint, this surgery was well below the cost of ANY US surgical procedure and I made sure they understood it.

As far as my surgical procedure. I have an ADR at C4/5 and C6/7. I still have my fusion at C5/6 - which is no longer an issue. The two ADR's "sandwiching" it act like guardians. The dengeration is stopped both above and below. It was a remote thought that the plate and screws could have been removed during the surgery - just to eliminate the metal parts, but due to scar tissue growth, Dr. Bierstedt felt that it would have caused additional healing time and not necessary. He wasn't impressed with the placement of the plate - it was crooked, but wasn't going to cause any harm.
I am a perfect example of why you need to look beyond fusions. In my experience, my fusion at the time, stopped the initial pain and paralysis of my left arm. I didn't know any better, but was warned by others that I may be back in the same situation within a year or two - barely made it that long. Because of the restriction of movement at the fused level, the energy is diffused to the levels above and below. When I had my car accident, it was inevitable that those levels received a much higher level of force. Since the ADR can retain mobility, this is no longer an issue.
Prior to my surgery, my pain was inconsistent in its location and intensity. There were times I had stabbing, shocking pain in my shoulder blades or the back of my neck. I would lose feeling in my arms and fingers; sometimes down into my left leg. The headaches were the most grueling and eventually my undoing. The migraines became more intense and frequent; usually lasting 3/4 days with 1 to 2 day reprieve before it would restart. I was fearful that I couldn't last much longer.
I still have reminiscent pain once in awhile; probably sympathy pain (hah), but never at the level it was, and probably due to common muscle aches from movement I was unaccustomed to.
I hope both of you do have the success that I had - for me I still don't know if I'm completely pain free - I don't know what that is like since I do have a connective tissue disorder, but I am more active than I ever have been and enjoying life!
Lastly, Dr. Bierstedt wasn't sure if he could place an M6 at the C6/7 level due to the severe compression. He choices (prior to me going under) was to "pry" open the areas enought to fit the M6, replace the M6 with a MobiC due to the size configuration, or fuse - it nothing would fit. Even though there is a keel with the M6, it is not intrusive enough to replace, if necessary. Again, bone issues are part of that configuration regardless of the situation.

Good Health to you, Laura

In How Doctors Think, the author discusses this. For some conditions, radiologists looking at an MRI or X-Ray would later change their impression (if they re-examined the image) up to 8% of the time. A different radiologist might disagree up to 15% of the time. These phenomena are referred to as intra-observer and inter-observer variability. This is why a second opinion is so important, and multiple second opinions should always be sought, if time and resources permit.

Ironically, the author (a doctor himself), explains his biggest medical regret as a fusion he had done on his lower back. The book was written in 2007 - it would be interesting to know his opinions on ADR. I imagine he might be an advocate.

The bottom line: You can never guarantee a diagnosis or recommendation, you can just maximize the odds. As a patient, you ideally want 3-5 experts in agreement about your general treatment plan (though they may disagree on smaller issues).

DrewDotNet, thank you for your very insightful post! It really emphasizes how important it is to suck it up, deal with the pain and not go with the first surgeon that wants to do surgery on you. Easier said than done I certainly know. People have this blind faith in doctors that is often to their detriment. I just try not to be one of them! I think it's easy to fall into the trap. What has me concerned lately is the build up of scar tissue that does not show up on MRI's or X-Rays. I've had four minimally invasive surgeries on my neck already. I'm not sure if there is a scan out there that can help the surgeon to anticipate what he'll run into once he opens me up.

Laura, I so appreciate your posts! Reading your list of symptoms revealed so many similarities to my own experience. I still have not found a surgeon that will agree that my leg problems are related to my cervical spine. Also, I laughed when you said you became a nuisance to the insurance company. I KNOW HOW TO DO THAT! I also may hire an attorney if I'm not feeling up to the task. I'll cross that bridge when I get there. Your last comments about Dr. Bierstedt were interesting. I'm so glad he got the M6-C into your C6-7 level. Wow, that must have been unsettling going into the surgery and not knowing the expected outcome. I'm so glad that most of your pain issues have been resolved! It gives me hope.

Today is a big day for me. I finally have my appointment with the surgeon at the Barrow Institute in Phoenix. Hopefully, I'll report back with a positive experience!

the exchange rate
 

yeah the exchange rate is not good USD to British Pound at the moment. The Euro is way better. It was 1.34 to 1.00 Euro last May and now it's 1.09.